Mothers' experiences with feeding children with a gastrostomy tube: recontextualizing mothers' daily occupations

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MOTHERS‘ EXPERIENCES WITH FEEDING CHILDREN WITH A
GASTROSTOMY TUBE: RECONTEXTUALIZING MOTHERS‘ DAILY
OCCUPATIONS

by

Karla K. Ausderau

A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(OCCUPATIONAL SCIENCE)

December 2009

Copyright 2009 Karla K. Ausderau

ii

Acknowledgements

I owe my deepest gratitude to a number of individuals for their support in
completion of my dissertation. First I would like to express my sincere appreciation to
Dr. Mary Lawlor, my committee chair. Her guidance and support was invaluable. Dr.
Lawlor provided mentorship that will continue to influence my scholarly work for years
to come. I am deeply honored to have had to the opportunity to conduct my dissertation
under her guidance. I would also like to thank the other members of my committee, Dr.
Jack Turman, Dr. Gelya Frank, and Dr. Ann Neville-Jan. They were all generous with
their time and support through the research and writing process.
My experiences as a University of Southern California, Leadership Education in
Neurodevelopmental Disabilities (LEND) Fellowship occupational therapist trainee at
Children‘s Hospital Los Angeles Center for Excellence in Developmental Disabilities
Education, Research, and Service (UCEDD) funded by Maternal and Child Health
Bureau (MCHB) began to shape my interests and academic pursuits when initially
entering the doctoral program. The mentorship by Dr. Diane Parham, Dr. Alice Kibele,
and Chana Hiranaka encouraged work and research with an interdisciplinary focus with
families with children with special needs.
I owe a special debt of thanks to the mothers and families who participated in the
research study for their openness and generosity with their time. I feel privileged to have
heard their stories. I can only hope to adequately represent their meaningful narratives in
a scholarly manner.

iii

I am especially thankful to Kim Wilkinson, a friend and colleague, with whom I
have intimately shared the dissertation process. Her words of encouragement and support
have made every step of this academic journey possible. In addition, I have greatly
appreciated our joint interest in research and work with children with disabilities and
their families.
Finally, I am most thankful to my family. My parents have continued to provide
me with encouragement and care over the years. Their unwavering confidence in my
abilities has been overwhelming. My sincere appreciation extends to my husband, Todd,
and my son, Jackson. We have lived the dissertation journey together. They have
provided unconditional support and patience throughout the process for which I am
forever indebted.

iv

Table of Contents
Acknowledgements ii
Table of Contents iv
Abstract vii
Chapter 1: Statement of the Problem 1
Researcher Perspective 1
Relevance to Occupational Science 6
Relevance to Occupational Therapy 8
Research Questions and Methods 9
Limitations of the Study 10
Chapter 2: Review of the Literature 12
Gastrostomy Tubes 12
The decision making process 13
Feeding becomes a technological process 14
Feeding as a daily activity 16
Mother-child interactions 20
Foreign Caretakers 22
Summary 23
Mothering and Mothering Occupations 24
Occupational Science and Mothering 28
Mothering a Child with Special Needs 30
Cultural Influences on Mothering 33
Mother-Child Interactions 35
Attachment 36
Co-occupations 37
The Social Nature of Feeding 40
Chapter 3: Methodology 42
Assumptions 42
Selection of Methods 44
Participants in the Study 45
Human Rights and Informed Consent 53
Phases and Procedures for Methods 53
Data management 58
Reflexivity 59
Analyzing the data 59

v

Chapter 4: Collection of Individual Family Stories 62
The Family Story for Sophia and Erek: We Proved Them Wrong 62
I have support, but I am responsible for his care 62
Hyperbaric oxygen therapy 64
Do I need a diagnosis for my son? 66
Erek will die 68
Hope emerges 69
Erek will get better 70
The ventilator is taken away 73
The Family Story for Pam and Isaiah: We Work Hard at Normal 77
My relationship with god 78
John 3:16 79
Pam gets ill and Isaiah gets a g-tube 81
I didn‘t hire you to be me just to help me 82
My mother won‘t see Isaiah 84
Christian homeopaths 85
Where is my ice cream cone? 86
The Family Story for Nellie and Mark: A Cultural Negotiation 89
My cultural knowledge 90
I will not take care of this baby 92
Cultural implications of daily life 93
Nursing and medical manager 98
Feeding Mark 100
My son is still fighting; I have to fight with him 102
The Family Story for Heather and Anna: My Private and Public Worlds 104
My private and public worlds 105
The doppler 110
My baby is hideous 111
Heather‘s illness story 114
Friends and family 116
The Family Story for Jane and Braden: We Want Him to Be Healthy, You
Know Happy, and Do the Best We Can 120
The trade 121
It was like when you need a haircut 122
You can‘t have him, not yet 123
Braden‘s medical team 125
My mother-in-law moved in: We had no choice 128
Equipment as a barrier for social engagement 130
A bottle of champagne 132
The Family Story for Akemi and Micah: I Will Do It Right Next Time 134
Learning to be a mother 137
March 20th, the day our life in the hospital began 139
Micah transitions to the g-tube 144
I bought ten purses that day 145

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The Family Story for Frana and Heath: The Balancing Act 148
I knew something was wrong 149
Balancing Heath‘s g-tube feedings, oral feedings, and his comfort 152
Another aspiration 155
I put my own food in his g-tube 156
The emergency plan 157
Chapter 5: The G-Tube: A Mother‘s Blessing and Curse 162
The G-tube Goes in at Birth 162
The Blessings of a G-Tube 167
Mixed Blessings 170
Unrealized Promises 173
Chapter 6: Mothering Work: Creating Opportunities for Occupation and
Agency through the Technicalities and Care of a Child with a G-tube 178
Medicalized Mothering 178
Equipment and Supplies 185
I need a working pump 186
I can‘t change her button; I don‘t have an extra one 190
Equipment modifications; Simple but significant 192
G-Tube Feedings 196
G-tube feedings within everyday occupations 196
G-tube feedings as an opportunity for engagement 197
Burdens and Benefits of Caregiving 201
Chapter 7: The Dimensions of Mothering 210
The Primal Instinct to Feed My Child 211
My Life Revolves Around Feeding 220
Pumping as Mothering Occupation 224
Providing Nourishment through the G-tube 227
Chapter 8: Conclusion 231
Personal Reflections 231
Implications 234
Complications of the g-tube 234
Fragmentation of care 235
Co-occupations 238
Feeding therapy was good, I am just not sure if it helped 238
Limitations 241
The G-Tube as Situated within a Context of Chronic Illness and Medical
Fragility 242
References 245

vii

Abstract
Background: One of the most intimate aspects of mothering is feeding a child. A change
occurs in mothering occupations when a gastrostomy tube is placed in a child and the
methods of feeding are altered. Frequently mothers feel as if they have failed when their
children receive a gastrostomy tube. The majority of literature regarding children with g-
tubes comes from a bio-medical perspective, focusing on the medical and technology
aspects of a g-tube. Limited information can be found in the literature regarding the
socio-cultural dimensions, mothering, and mother-child interactional aspects of parenting
a child with a g-tube. This research proposes to fill a gap in the current literature
surrounding mothering, feeding, and gastrostomies.
Purpose: To explore mothers‘ experiences of feeding and caring for children with a
gastrostomy tube.
Methods: The study involved narrative and thematic analysis of interview data collected
during in-depth narrative interviewing of seven mothers of children who were primarily
fed through gastrostomy tubes.
Results: Mothers revealed the complexities inherent in caring for a child with a
gastrostomy tube. Through their stories, mothers expressed the gains and unanticipated
challenges after the placement of a gastrostomy tube and new ways of thinking about
mothering in the context of chronic illness. Unique dimensions of mothering as related to
caring for a child with a g-tube were discovered.
Conclusions: For all of the children and families, the g-tube was situated within a
context of illness and fragility. The experiences with feeding the children by their g-
tubes impacted the mothers‘ daily occupations and relationships with their children. The

viii

g-tube and associated occupations were what mothers and children were dealing with on
an everyday basis. However, the illness story behind the g-tube was what had shaped its
daily meaning. The g-tube was required for these children to receive calories and was a
central part of their daily lives, but the families‘ stories also reflected that they were in a
broader community of chronic illness and other health care needs. The mothers and
children in my study were not able to firmly be situated in any one discourse, but instead
crossed into areas of feeding, chronic illness, technology dependency, and mothering.
The g-tube was very much its own entity that was easy to see, identify and had its own
set of associated technical procedures. However, in the actually lives of the mothers and
children the g-tube was a complicated embedded phenomenon that could be perceived to
possibly have more to do with mothering than about feeding.

1

Chapter 1: Statement of the Problem
Researcher Perspective
I am an occupational therapist who has focused her career on working with
children with special needs, specifically children with feeding challenges. I work in a
practice that uses an interdisciplinary approach to address feeding challenges in children
by contextualizing services within a family unit. The children‘s feeding challenges stem
from a wide range of diagnoses such as autism, gastrointestinal reflux, mitochondrial
disorder, complications of prematurity, neurological disorders, and a range of genetic
syndromes.
Many children in our clinic receive their nutrition through a gastrostomy tube. I
have been struck by the phenomonal investment of parents, particularly mothers, in
having their children eat by mouth before or after a gastrostomy tube (g-tube) was
recommended or placed. We work with families, but the majority of the time, mothers
are the primary caregivers when concerned with a child‘s nutritional intake whether it be
orallly or non-orally. It became clear to me early on in my practice that being able to
feed your child by mouth was much more than simply a way to receive caloric
nourishment.
A child‘s feeding abilities not only validated a mother‘s idea of being a good
mother, but also the child‘s successful participation as part of the ―family‖. For the
mothers, feeding represents both reward and defeat. It frequently involves the stress of
counting minuscule calories, monitoring for aspiration, extended mealtimes, and
implementing implicit strategies to allow their child to have a succesful meal as
determined by the number of calories consumed and safety maintained during the eating

2

experience. As interventionists, we spend significant amounts of time reinforcing with
mothers that it is not their fault that their child is not able to eat by mouth. For the
children, eating has frequently been associated with great effort, pain, discomfort, and
struggle. However, it usually is also a time that they often have the undivided attention
of their mothers. Feeding remains an activity surrounded by conflicting emotions that a
mother and her child share on a daily basis. The insertion of the g-tube often replaces the
rewards and struggles of oral feeding causing a shift in the basic ways that mothers
interact, view their responsibilities toward, and schedule their time around their child. As
I watched this process unfold for a number of families, I became especially interested in
what happens around the feeding experience between the mother and her child after a g-
tube has been placed.
On a more personal level, I recently became the mother of a child who was born
prematurely with a low birth weight. One of his primary challenges during his stay in the
neonatal intensive care unit was feeding. I was now participating in the experience of
having a child who was not able to eat by mouth. It was very challenging for me to
decipher how I was going to aquire my new role as a mother when I was not able to meet
my own son‘s basic needs. I was not able to take him home with me when I left the
hospital, I was not able to hold him when he was distressed, and I was not able to feed
him when he was hungry. I had always envisioned that I would be able to breast feed my
child in a manner that would not only provide him nourishment, but comfort. I now
watched my child be fed intraveneously and eventually through a naso-gastric tube on a
very rigid schedule. I was not able to hold him as he was fed because he would become
too stressed, having difficulty maintaining his oxygen saturation. I struggled with how to

3

connect with my son and negotiated how I would insert myself as his mother within the
neonatal intensive care unit. The day did come when I was allowed to feed him for the
first time. I was very anxious, even if in many ways this is what I did for a living.
However, it was different because it was my son. I was not allowed to hold him, but put
my arm through port holes in the isolet to position his very small body. I remember
navigating through the port holes to craddle his small head in my left hand while trying to
position the tiny bottle with my right hand without trying to disrupt any of the monitoring
wires, his IV, or naso-gastric tube. It was a challenging experience for both of us. He did
not drink any of his bottle and it surely was not what I had imagined feeding my son
would be like for the first time.
Mothers, including myself, have preconceived beliefs about what it means to be a
mother. They consciously and even subconsciously have ideas of how they will interact
with their infant or young child before they are born. A mother and young child develop
dialogues around early interactions. Commonly discussed is the rhythmicity involved in
social dialogues from very early on in life that requires some level of adaptation from
both the mother and child (Bowlby, 1988). Around the same time mother-child dialogues
can also be observed through feeding. A mother reacts in rhythm with her infant,
instinctively knowing when to engage and when to be quiet in order to support the infant
in a successful eating experience (Kaye, 1977). A mother‘s response is elicited by a
child‘s behavior which is incredibly complex and intricate, but when observed, seemingly
simple. This dance can also be seen in what is described as attachment behaviors that
become increasingly complex as children mature (Bowlby, 1988). When an emotion
such as fear, anxiety, or discomfort is triggered in a child, the child seeks out an adult,

4

typically their mother, to assist in resolving the triggered emotion. If the dyad is able to
successfully connect around the emotional experience, a sense of security is enjoyed by
both. However, if a disconnect is experienced, further emotional distress and insecurity
can persist.
Parents desire for their children to grow up to be healthy, happy, and self-reliant.
When this does not occur, they often can feel as if they have failed in their job of
parenthood (Bowlby, 1988). One of the most intimate aspects of mothering that
frequently contributes to how successful a mother deems herself to be is feeding.
Feeding is one of the first activities a mother attempts with her infant after they are born.
When mothers are allowed to do as they wish after delivery, the mother is typically
observed to bring the infant to the breast in an attempt to feed and comfort within five to
six minutes after delivery (Klaus, Trause, & Kennell, 1975).
Feeding can become one of the primary criteria for which she is judged not only
by herself, but also by her family, friends, and even by society if she is a ―good mother‖.
The concept of being a ―good mother‖ is important to consider as it shapes how a woman
reflects on her own ability to mother. Women become preoccupied with how their
actions impact their children‘s overall well being. When a mother is presented with an
unfamiliar challenge such as caring for a child with a gastrostomy, these changes bring
the ideals by which she judges herself to the forefront. Society expects mothers to be
responsible for feeding their children. It is not hard to conceive how a mother may blame
herself when she is not able to successfully feed her child by mouth.
Providing nutrition to your child may be complicated if your child has feeding
challenges. Feeding your child may become an unfamiliar experience and involve

5

foreign equipment such as total parenteral nutrition (TPN), a naso-gastric tube (NG-tube)
and/or a gastrostomy. TPN is a method of administering all of the nutritional
requirements, most frequently, through a central venous catheter. It allows a method for
receiving all needed nutrients while completely bypassing the gastrointestinal tract. TPN
can be indicated when the gastrointestinal tract is not working. A NG-tube is a flexible
tube that is inserted through the nose, down into the esophagus, and passes down into the
stomach. It provides a path for liquid nutrition to enter the stomach via the nose while
bypassing the mouth. It is less permanent as it does not require a surgical procedure and
does not actually physically change the body. A NG-tube is typically considered a short
term method of receiving nutrition until the problem resolves or until a gastrostomy can
be placed. A gastrostomy is a surgically created external stoma in the stomach wall
through which a catheter device is implanted so that nourishment can be infused directly
into the stomach, bypassing the mouth and esophagus (Thorne, Radford, & McCormick,
1997). A fundoplication is another surgical intervention often associated with children
with g-tubes and is relevant for the children in my study. A fundoplication is when the
upper portion of the stomach, called the fundus, is wrapped around the lower part of the
esophagus. The procedure is typically done to prevent gastro-esophageal reflux. The
placement of an alternative feeding method dramatically changes the relationship around
feeding for the mother and her child. It also changes the occupations that a mother and
her child are able to share. Not only does the placement of an alternative feeding method
impact joint occupations, it directly changes the responsibilities of a mother. A mother
must now learn how to navigate a new world surrounding the gastrostomy. She must
learn how to provide direct care involving the gastrostomy such as use and cleaning.

6

There are also many peripheral activities such as equipment management, ordering
equipment, and management of support systems such as respite, nursing, and nannies.
For many, the process of feeding has become medicalized and detached, making it
difficult for mothers to continue to provide the nurturance that frequently accompanies
feeding, particularly in young children (Campbell, 1988; Sleigh, 2005). The
medicalization of feeding forces mothers to learn new ways of feeding their child, a new
language around feeding, new types of ―food‖ that they should provide, and different
ways of comforting and connecting with their child.
Frequently mothers feel as if they have failed by consenting to a gastrostomy for
their child (Campbell, 1988; Guerriere, McKeever, Llewellyn-Thomas, & Berall, 2003).
It is further complicated by the fact that social groups also frequently blame the mother
for not being able to feed her child, at times asserting if they (mothers) would just ―work
harder‖ the child would eat (Guerriere, et al., 2003, p. 474). A gastrostomy has symbolic
meaning for mothers that goes beyond providing nourishment for their child. It replaces
the fundamental activity of feeding. The loss of the occupation of feeding has a range of
psychosocial effects for a child and family (Craig, 2003). Depending on the reason for
the gastrostomy placement, a mother may still attempt to feed her child by mouth on a
daily basis. However, it takes on a new meaning as it is now supplemental or optional
versus a necessary part of her daily activities.
Relevance to Occupational Science
This research proposes to fill a gap in the current occupational science literature.
Occupational scientists have been studying mothering, but in many ways we have just
begun to scratch the surface. The occupations of mothers have been examined in varying

7

aspects. As related to this research, the occupations of mothers with children with
disabilities have been explored with different emphasis (Donovan, VanLeit, Crowe, &
Keefe, 2005; Kellegrew, 2000; Larson, 2000a, 2000b; Lawlor, 2004; Olson & Esdaile,
2000). However, there is limited research that has been produced from an occupational
perspective on the occupations of mothers around feeding their children with special
needs and how having a child that you as a parent are no longer able to feed, impacts
your individual identity as a mother. There is especially a dearth of literature
surrounding mothering a child with a gastrostomy tube. My research contributes to the
body of knowledge in occupational science by adding to the literature of how mothering
occupations are conceived and created around feeding your child with special needs,
specifically with children with gastrostomies. It incorporates how mothering occupations
are developed in response to their child‘s behaviors and needs around receiving adequate
nutrition.
Co-occupations is a construct from the occupational science literature that I
thought might be useful for my research. However, it appears to be too finite to describe
the complicated and dynamic interactions that occur between a child and a mother. There
is limited information in the occupational science literature clearly defining co-
occupations or how they are created, shared, and negotiated, specifically through a
mother and her child. Co-occupations, without necessarily being labeled as such, are
discussed while describing occupations or as an emergent finding in a few studies (Fraita-
Hunt & Zemke, 1996; Olson & Esdaile, 2000; Zemke & Clark, 1996b). However, how
the authors are defining co-occupations to then be applied to their work is often unclear.
Olson (2004) directly takes on the task of furthering the understanding of co-occupations

8

between a mother and her child. She examines co-occupations such as feeding, sleeping,
and comforting, individually from the mother‘s perspective and the infant‘s perspective,
but does not discuss the single co-occupation, such as feeding, as a joint interaction
between the mother and the child. In Dunlea‘s work (1996) with mother-infant dyads
with infants who are blind, she describes co-occupations as ―basic interactive routines‖
between parents and infants (p. 228).
I had anticipated that as a part of my research I would begin to rethink about the
definitions and explanations of co-occupations presented in the occupational science
literature. My initial thoughts were the ideas around co-occupations were too limiting,
not adequately describing what occurs between a mother and a child during intimate
activities such as feeding. As I began to analyze my data, I realized that even my own
thinking had been too constricted and the process of describing the interactions between a
mother and a child and the ever-changing consequences of that interaction will require
increased reflection.
The experience of mothers with children with gastrostomy tubes has most
significantly been addressed in the nursing literature which will be reviewed in later
chapters. However, by shifting the research lens to an occupational perspective, new
meaning, discussions, and findings were discovered.
Relevance to Occupational Therapy
Coming from the background of a currently practicing occupational therapist, it is
essential for me in my work as an occupational scientist that I contribute to the profession
of occupational therapy. As stated by Clark, et al. (1998) occupational science is linked
through its focus on occupation ―to nurture the profession of occupational therapy‖ (p.

9

16). When working with families with children with special needs, it is crucial to be able
to unite with the primary caregiver, typically the mother, to be able to collaborate to
provide the best possible services to their child. When addressing feeding, an intimate
occupation between a mother and her child, the relationship becomes even more
imperative. By further understanding the multiple meanings mothers assign to feeding
their child and how that is impacted when a gastrostomy is placed, occupational
therapists gain increased knowledge on how to further support the relationship between a
mother and her child around oral and non-oral feeding experiences. Further learning
about the occupation of mothering will impact how occupational therapists perceive and
approach their goals with the child (Zemke & Clark, 1996b). By supporting the
relationship between the mother and the child, the occupational therapist can move
toward the family feeding goals in a more timely and respectful manner. Exploration of a
mother‘s stories around their experience of mothering a child with a gastrostomy tube
will provide occupational therapists with further insight to support families throughout
the process and further normalize feeding for families that have a child with a
gastrostomy.
Research Questions and Methods
The following four questions guided this qualitative research study.
1. What is a mother‘s experience of feeding a child with a g-tube?
2. How can the occupations and co-occupations of feeding and mothering be further
understood through the study of the particular circumstance of feeding a child with a
g-tube?

10

3. How does feeding a child with a g-tube become situated within everyday family
life?
4. How do mothers perceive that feeding a child with a g-tube impacts or impacted
their relationship with their child?
The purpose of this study was to explore how women negotiate their experience
of mothering when challenged by having a child who requires a gastrostomy and provide
a richer understanding of mothering occupations that emerge out of having a child who is
no longer able to receive the majority of their nourishment by mouth. I tried to further
understand the experience of mothering of children who have had a gastrostomy in terms
of (a) the multiple meanings that are assigned to feeding a child beyond attaining
adequate nutrition; (b) the loss of mothering occupations when a gastrostomy is
recommended and placed in a child; (c) how the placement of a gastrostomy begins to
shape the relationship around feeding and non-feeding experiences; (d) the reciprocal
engagement that occurs around the oral and non-oral feeding experiences; (e) the new
occupations that may emerge out of a child receiving a gastrostomy; and (f) how these
―new occupations‖ now blend or interfere with other daily occupations.
A qualitative approach was used to conduct the study, collecting data through
open ended and narrative interviewing techniques.
Limitations of the Study
As with all research, certain limitations of the proposal have been identified.
Some of the limitations are as follows:
1. The children in the study did not all have their gastrostomies for the same period
of time. Research participants were recalling experiential information from

11

different lengths of time since the gastrostomy was inserted, the time passed since
insertion may impact where the mothers are in their process of adaptation to their
child having a gastrostomy.
2. Due to the small number of participants, the findings of the proposal can not
necessarily be generalized to the general population of mothers with children with
a gastrostomy. However, the ―thickness" of the data should enable applicability
of the findings.
3. Ethnic diversity and socio-economic status was considered. However, it was not
taken into account when recruiting participants for the study. Across the seven
mothers that did participate in the research, there was ethnic diversity and varying
socio-economic status. I do acknowledge how mothering and feeding are solidly
situated in an individual family‘s personal and larger cultural context and
considered it with participants in the research study.
4. Families with children with gastrostomies with varying birth order were included
in the study. I did not sample around birth order. I believe the birth order does
impact a mother‘s knowledge and style of interacting with her child with special
needs. If her child with special needs is her second born, she will already have
established a practice of mothering that may be challenged or that second child is
easily incorporated into. However, if the child with special needs is born first,
this child will be establishing her practice of mothering. It is anticipated the
difference in birth order does impact a mother‘s repertoire of mothering
occupations and therefore her reactions to having an atypical mothering
experience with a child with a gastrostomy.

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Chapter 2: Review of the Literature
The majority of literature regarding children with g-tubes comes from a bio-
medical perspective primarily focusing on the medical and technology aspects of a g-
tube. A small portion of the literature highlights the decision making process of g-tube
placement for parents and professionals. Overall, the literature is particularly
disappointing as related to the multiple dimensions that having a child with a g-tube will
have on a mother‘s life. Limited information can be found regarding the socio-cultural
dimensions, mothering, and mother-child interactional aspects of parenting a child with a
g-tube. I will review the literature that contributes to the knowledge of feeding a child
with a g-tube as having socio-cultural dimensions and as being more of a fundamental
mother child interactional experience. However, providing a comprehensive review of
subjects such as mothering, parenting children with special needs, culture, and feeding
are beyond the scope of this project. Specific aspects of these topics are highlighted as
relevant to support my research questions.
Gastrostomy Tubes
Feeding a child by a g-tube clearly has many implications for a mother and her
child beyond the confines of their relationship. The literature is particularly sparse as
related to the considerations of the socio-cultural context in which g-tube feeding occurs
in daily life and its impact on a mother-child relationship. Feeding a child by a g-tube
can alter the feeding experience from an interactive meal to be viewed and acted upon
like a medical treatment or procedure (Brotherson, Oakland, Secrist-Mertz, Litchfield, &
Larson, 1995; Craig, 2003; Enrione, Thomlison, & Rubin, 2005). One mother even
described the actual process of feeding her child by a g-tube as the feeding ―lacked

13

emotional content…it‘s dead‖ (Sleigh, 2005, p. 379). The literature recognizes that
mothering a child with a g-tube impacts the mother-child relationship and feeding
experiences. However, while researchers acknowledge the impact, they do not
adequately explore or discuss the complexities around having a child with a g-tube and its
impact on the mother-child relationship.
The decision making process. The decision making process to insert a g-tube
into your child is an area that has been addressed in the literature (Brotherson, et al.,
1995; Guerriere, et al., 2003; Spalding & McKeever, 1998; Thorne, Radford, &
McCormick, 1997). A commonality among the studies is how caregivers, primarily
mothers, discuss the difficulties in deciding to put a g-tube in their child. They
particularly focus on the complexities around the decision making process because often
families describe both gains and losses for a child and family when the child receives a g-
tube. Families expressed that whether the decision to insert a g-tube was made or not, the
decision had undesirable outcomes in some ways (Guerriere, et al., 2003). Children who
are considered candidates for g-tube placements must have severe feeding and/or
nutrition problems, so continuing to negotiate those challenges may lead to stress and
fatigue for family members and most importantly stress, fatigue, and compromised health
for their children. However, the placement of a g-tube does not come without
complications. It has social and cultural implications for the family along with social,
physical, and health implications for the child. Although the decision making process is a
challenging one, parents often experience great relief once the g-tube is placed even
though there may be certain undesirable outcomes associated with its placement
(Spalding & McKeever, 1998; Thorne, Radford, & McCormick, 1997).

14

When a professional recommends a g-tube, it reflects their beliefs about a child‘s
ability to be able to sustain themselves by oral methods. Common reactions from a
family are that of giving up hope, dreams, relinquishing normality, finality of maternal
failure, relief, and the end of a struggle or battle (Judson, 2004; Sleigh, 2005; Sullivan, et
al., 2004; Thorne, Radford, & McCormick, 1997; Townsley & Robinson, 2000). These
reactions, including feelings of loss and relief, set the stage for life after g-tubes for
children and mothers. Parents are determined to continue to feed their child by mouth
and many with the hope that the g-tube may eventually be removed (Sleigh, 2005;
Spalding & McKeever, 1998; Thorne, Radford, & McCormick, 1997). Nelson (2002)
concluded when doing a metasynthesis of qualitative studies of children with special
needs that the most important piece of information to be taken from her work was ―the
significance of maintaining hope in fueling maternal caregiving‖ (p. 529). In summary,
the literature describes families experiencing complex and variable emotions when their
child receives a g-tube. These feelings and reactions are likely to further impact the
mother‘s future interactions around feeding their child.
Feeding becomes a technological process. G-tube placement signifies the
permanence of the need for non-oral feeding support for a child. By consenting to a g-
tube the family is physically identifying their child‘s inability to eat. The g-tube disrupts
body integrity and is considered by many an abnormal way to feed your child (Spalding
& McKeever, 1998). The g-tube is a permanent alteration in the child‘s body to provide
an alternative method to oral feeding. Parents may describe the g-tube as disfiguring and
socially unacceptable (Enrione, et al., 2005; Guerriere, et al., 2003; Sleigh, 2005). One
mother described the g-tube as ―protruding from his (her son‘s) abdomen like an extra

15

limb‖ (Campbell, 1988, p. 40). Once the child receives a g-tube, it also adds or changes
the child‘s label within the medical community as the child is now often referred to as a
technology dependent child (Judson, 2004; Miles & D'Auria, 1994; Ratliffe, Harrigan,
Haley, Tse, & Olson, 2002; Sleigh, 2005; Thorne, Radford, & McCormick, 1997; Wang
& Barnard, 2004). By using the label or terminology ―technology dependent‖ when
referring to a child who has a g-tube, the label begins to shape how easily focus may be
centered on feeding as a medical procedure versus a feeding experience. The insertion of
a g-tube creates a physical permanence of a child‘s feeding challenges along with
changing their status with health professionals in the community to a child who is now
technology dependent. The ―decision to technologize the feeding process may be
intensely loaded with symbolism and emotional pain‖ (Thorne, Radford, & McCormick,
1997, p. 92). The research supports that having a g-tube begins to shift the feeding
experience to a more technological procedure.
The shift to medicalizing the feeding process is further supported by the wealth of
research regarding the medical implications of having a g-tube (Fox, Scott, Malas,
Duggan, & Leichtner, 1997; Kutiyanawala, Hussain, Johnstone, Everson, & Nour, 1998;
McGrath, Splaingard, Alba, Kaufman, & Glicklick, 1992; Smith, Camfield, & Camfield,
1999). Medical complications such as stoma infections, tube dislodgement, skin break
down, and gastroesophageal reflux have been identified, occurring in a large population
of children with a g-tube. Feeding becomes more strongly correlated with the medical
model once the g-tube is placed. The information gained by this association is valuable
in the technical care of the g-tube and associated complications. However, the strong

16

medical emphasis once again supports what a dearth of research there is with regards to
the social-emotional aspects that are associated with the insertion of a g-tube as well.
Feeding as a daily activity. Families who have children with disabilities often
highly value normal daily activities (Thorne, Radford, & McCormick, 1997). Parents
tend to emphasize these daily living skills that are open to public examination such as
eating or feeding (Kellegrew, 2000). Eating is often one of the basic abilities a child
continues to possess even if they have a disability. Eating by mouth may even be one of
their highest developmental skills. It represents one of the last normal parenting role
mothers have been able to maintain with their child (Guerriere, et al., 2003; Thorne,
Radford, & McCormick, 1997; Townsley & Robinson, 2000). Campbell (1988)
described how consenting to a g-tube for her son was relinquishing one of the last aspects
of normal parenting she had.
Judson (2004) is one of the few researchers that has focused on the mothering role
of women with children who are fed by non-oral means, total parental nutrition (TPN) in
her study. She interviewed 19 mothers to determine the practice and interpretation of
their mothering role. Judson found that normalizing feeding and eating behaviors was of
the utmost importance in mothers attaining their role identity. The mothers in her study
found ways to promote normal family eating routines by including children in meals for a
specific part of the meal such as the prayer, allowing them to play with a special toy at
meals, and making modifications to the meal to allow them to participate by eating a
―different‖ food or simply exploring the food through licking or tasting.
Townsley and Robinson (2000) did a study in England where they interviewed 39
families with children with g-tubes around the topics of support systems. When

17

interviewed, families mentioned how it was important to allow the child to participate in
family meals as much as possible. ―We sit and eat together. It is a social occasion. For
him not to be there would exclude him from the family. He notices if he has an empty
plate so we take turns to be the one with the empty plate, even if he doesn‘t eat what‘s on
it!‖ (Townsley & Robinson, 2000, p. 39).
The previous studies describe a mother‘s desire to have her child participate in
what I would describe as daily occupations around food and mealtime. Although their
children may not be able to eat the familiar family food, they were able to describe other
ways their child would participate in the meals and mealtime routines that were still
meaningful.
Time use and the generalized lack of time with respect to mothering a child with
special needs has frequently been discussed in the literature. Mothers with children with
special needs often express the desire for more time, adding a child with feeding
difficulties significantly increases the already limited time available (Donovan, et al.,
2005). Johnson and Deitz (1985) report that mothers of children without disabilities
spend approximately .8 hours per day feeding their children while mothers of children
with special needs spend 3.5 hours per day feeding their children with some mothers
reporting up to 7.5 hours per day. Parents with children with g-tubes report spending
extended time on feeding occupations before and after the g-tube placement (Craig, 2003;
Spalding & McKeever, 1998). Providing care for a child with a g-tube, innately involves
a number of technical and procedural tasks in addition to more familiar mothering
occupations. This type of care that mothers often provide to their children with g-tubes
has been documented to require more than twice as much time as the care necessary for

18

other children with chronic illness (Heyman, et al., 2004). Heyman et al. (2004) did a
study that specifically looked at the amount of time required to provide care for children
with chronic illness that do or don‘t have a g-tube. The mothers of the children with g-
tubes on average spent 8 hours a day on various caregiving tasks that included a variety
of technical care surrounding the g-tube along with feeding activities. However, there are
also reports that feeding time and associated care was actually reduced after the g-tube
placement due to less of a struggle at meal times (Sullivan, et al., 2004; Townsley &
Robinson, 2000). In general, the literature has supported overall that mothers with
children with special needs report having limited time available due to the mothering
demands they experience and when adding a child with feeding challenges those
demands are elevated. However, the literature is lacking and at times conflicting in how
having a child with a g-tube may impact those every day time demands and in turn their
mothering occupations and routines. While time use is not a primary focus of this
research project, it is important to consider as it shapes how a g-tube feeding becomes
situated in everyday life.
The literature is particularly sparse with respect to the consideration of the
sociocultural context in which g-tube feeding occurs in daily life. This is surprising
because the implications of a g-tube clearly extend beyond the confines of a child and
mother. The sociocultural context influences how and when a child is fed, what and
when foods are introduced, who feeds the child, where the child is fed, and what types of
equipment are acceptable (Olson, 2004). The sociocultural context also influences how
feeding a child by a g-tube is viewed within social groups. A mother and child have to
endure the scrutiny of public opinion of feeding their child with a g-tube. Mothers can

19

feel judged by their families and larger social groups because a g-tube and the processes
surrounding it are unknown and unfamiliar (Craig & Scambler, 2005; Townsley &
Robinson, 2000). The majority of people do not know what a g-tube is, how to use it,
and when it may be necessary for a child. Although Garro (2000) does not specifically
talk about g-tubes, much of her work identifies the ways that illnesses in life are managed
and understood by what she describes as cultural knowledge. She discusses cultural
knowledge as being a resource to creating narratives that reconstruct the past while
giving meaning to the present. Families with children with g-tubes have a shared cultural
knowledge that assists in creating their narrative accounts by reconstructing past
experiences with their child‘s current illness. However, the majority of people are not a
part of this shared cultural knowledge. The actual process and presence of a g-tube is
foreign and unnatural due to the lack of knowledge. Initially a g-tube placement may be
considered as ―unnatural, medical, a mutilation that was likely to inflict pain‖ (Sleigh,
2005, p. 379). Family, friends, and acquaintances are often judgmental, blaming mothers
for not trying hard enough to feed their child based on their lack of knowledge. Ruddick
(1989) discusses how successful mothering is often measured by societal standards with
mothers often being socially rewarded for successful mothering work. Using a g-tube for
feeding is a foreign and unfamiliar process that many people don‘t understand. Mothers
must quickly move beyond that lack of understand to incorporate it into their daily
activities. However, other members of the mother‘s social group may still be
uncomfortable with the presence of a child‘s g-tube.
Mothers can be unwilling and unable to feed their children in public as part of the
social experience of having a child with a g-tube (Spalding & McKeever, 1998;

20

Townsley & Robinson, 2000). The g-tube feeding publicly identifies the differences in
the child‘s ability to eat (Townsley & Robinson, 2000). According to Olson, feeding
your child is one of the most ―visible occupations signifying a mother‘s public role‖
(2004, p. 34). Parents may isolate their child for g-tube feedings as to avoid public
scrutiny by feeding the child at home before they go, after they come home, or in private
places in public such as in the car or dressing room (Sleigh, 2005; Townsley &
Robinson, 2000). One of the mothers in Townsley & Robinson‘s (2000) study expressed
their discomfort with public g-tube feedings through the following quote. ―We hate
being in public places where people stare at us. We tend to find larger spaces where you
can do your own thing‖ (p. 41).
Mother-child interactions. Mothers value being able to feed their children by
mouth and the mother child interactions that occur around the feeding experience.
However, feeding experiences between a mother and child can be complicated by a
child‘s oral feeding challenges making feeding your child a less than positive
interactional experience (Campbell, 1988; Endriga, Speltz, Maris, & Jones, 1998;
Spalding & McKeever, 1998). The type of mother-child interactions that are occurring
around oral feeding experiences before the child receives a g-tube should be considered
within the context of this study. The context of the pre-g-tube feeding experiences in part
shape these feeding experiences after the g-tube is placed. Considering the challenges or
rewards that may have been associated with oral feeding experiences before the g-tube
will situate oral and non-oral feeding experiences after the g-tube.
A select number of studies within the literature related to mothering children
being fed by non-oral methods have touched on the topic of mother-child interactions.

21

Judson (2004) directly addresses concerns surrounding a mother‘s ability to attach to her
infant if she is not able to participate in typical oral feeding experiences. She concludes
that mothers in her study were still able to accomplish secure attachment with their
children. The mothers in the study hypothesized it was due to the ―intense care that was
provided to the child that provided the closeness needed for attachment to occur‖ (p.
114). However, feeding continued to be a challenging social-emotional experience for
these mothers. Although Judson (2004) determined that mothers in her study had
established adequate attachment with their children, the mothers continued to express
sadness and loss with regards to not being able to feed their children.
Townsley and Robinson (2000) did touch upon the topics of parent-child
relationship and attachment through their parent questionnaire. Some parents responded
that it had made them feel differently toward their child and how they interacted with
them. One parent described, ―The community nurse advised me to increase my physical
contact with him to try to compensate for not feeding him myself. Now he is probably
more cuddly than his brother. But I felt it took longer to get to know him. And it‘s taken
my partner a very long time to get used to him‖ (Townsley & Robinson, 2000, p. 56).
The authors also further elaborated on the physical contact as mentioned in this quote.
Due to the nature of g-tube feedings, less physical contact was required between the
parent and child, which was in turn responsible for overall ―less interaction between the
parent and child‖ (p. 57).
The literature has just begun to touch upon how the lack of being able to feed
your child may then alter a mother‘s self-perception or identity. Judson (2004) argues
that gratification of the mothering role may be dependent on having your child eat by

22

mouth. According to the g-tube literature, mothers report that not being able to orally
feed your child is associated with feelings of loss of being able to nurture and
appropriately care for your child (Brotherson, et al., 1995; Enrione, et al., 2005; Thorne,
Radford, & McCormick, 1997; Townsley & Robinson, 2000). The g-tube placement for
a child carries individual meaning to each mother and then impacts the manner in which
she mothers her child, particularly related to feeding (Craig, 2003). The g-tube feedings
themselves involve ―deep and complex emotions of mothering and nurturing‖ (Sleigh,
2005, p. 379). A prominent theme in the literature with regards to mothering a child with
a g-tube is a mother‘s perception of self-disappointment and failure when she is not able
to successfully feed her child (Campbell, 1988; Craig, 2003; Donovan, et al., 2005;
Holditch-Davis, Shandor Miles, & Belyea, 2000; Humphry, 1991; Judson, 2004;
Pridham, Schroeder, & Brown, 1999; Sleigh, 2005; Spalding & McKeever, 1998;
Thorne, Radford, & Armstrong, 1997; Thorne, Radford, & McCormick, 1997). It is
reported that mothers feel as if they have failed at being a good mother and feeding their
child. These feelings of failure are often exemplified by the extraordinary efforts that
mothers will expend in an attempt to orally feed their child before consenting to a g-tube.
Foreign Caretakers. One aspect that frequently accompanies a g-tube insertion
is the addition of new individuals involved in the daily care of the child. However, there
is extremely limited research on the impact of these additional caretakers on the daily
family life and a mother‘s occupations. Other people, frequently nurses or individuals
with some level of medical training, are now a ―stranger in the home‖ (Ratliffe, et al.,
2002, p. 181) that is paid to assist with care of the child, frequently including feeding.
The mother may no longer necessarily be considered the expert in feeding her own child

23

or even be responsible for the majority of the child‘s meals or feedings (Ratliffe, et al.,
2002; Thorne, Radford, & McCormick, 1997). This introduction of additional caretakers
also impacts the family dynamics and interactions around food, mealtime, and eating.
The addition of unfamiliar caretakers may be considered an intrusion on privacy and
invasion of home and family life (Petr, Murdock, & Chapin, 1995; Ratliffe, et al., 2002).
Requiring help from others may contribute to feelings of inadequacy, including an
inability to provide the necessary physical and emotional care for their child
(Traustadonttir, 1991).
Mothers may now be responsible for training and vigilantly monitoring these
foreign caretakers, which can be overwhelming physically and emotionally (Sleigh,
2005). Mothers may take on new occupations of management of nurses and purchasing
supplies versus more common mothering occupations such as feeding, comforting,
bathing, and playing with their child, which could provide mixed feelings and role
conflicts (Ratliffe, et al., 2002). The introduction and potential shift of occupations that
the literature suggests are considered in this study. The literature available does not
necessarily help us further understand what other occupations mothers may take on
related to feeding due to the introduction of foreign caretakers or the full impact these
caretakers have on the mother-child relationship.
Summary. Overall, there is limited literature available when considering
mothering and children with g-tubes. What is available, more directly addresses the
decision making process that occurs before the g-tube placement and the bio-medical
aspects occurring during and after g-tube placement. While these topics are not the focus
of my research, they do create the foundation on which future g-tube experiences are

24

built. A number of studies briefly touch on isolated topics related to mothering a child
with a g-tube. However, the literature is clearly inadequate as related to how having a
child with a g-tube may impact mothering occupations, the relationship between a mother
and child around feeding and how feeding a child with a g-tube is integrated into the
daily life of families.
Mothering and Mothering Occupations
Mothering and mothering work are topics that have been defined and addressed
extensively in the literature across multiple disciplines for decades. Select pieces of the
mothering literature, specifically from occupational science, sociology, and feminism,
will be reviewed as relevant to grounding my research questions.
Glenn defines mothering as a ―historically and culturally variable relationship in
which one individual nurtures and cares for another‖ (Glenn, 1994, p. 3). Current
literature describes mothering as being socially constructed work that women do in caring
for and nurturing children (Arendell, 2000; Glenn, 1994; Ruddick, 1989). Arendell
(2000) did a comprehensive review of recent academic work related to motherhood. She
suggests that while the amount of research surrounding mothering is vast, there continues
to be major gaps. She separates the research to this date into four domains: ―identities
and meanings of mothering, relationships with both children and others, experiences and
activities of mothering, and the social locations and structural contexts from within
women mother‖ (p. 1201). Arendell proceeds to question each of the four overlapping
domains to further provoke continued research specifically related in part to individual
mothering experiences and perspectives. However, her final conclusion was that future
research should continue to focus on the individual perspectives of mothers who are

25

situated each within their own socio-cultural context to provide greater insight into their
lives. Arendell‘s review of recent mothering literature would support that a shift has
been made over the years toward examining the experiences of mothers and their
individual perspectives, which is particularly of interest for my proposed research.
Roberts and Dunbar (2006) recently explored mothers‘ perceptions of the
experience of mothering. They found four major themes, socio-cultural impact, activities
and occupations of mothering, range of feelings, and role management. Their categories
bare some resemblance to the categories that Arednell (2000) described when doing her
review of the mothering literature as described above. Even thought the two studies
come from different disciplines and varying methodologies, they both are advocating the
importance of studying individual mothering experiences to further understanding the
daily activities of mothers and their families.
A prominent theme in a variety of the general mothering literature is the concept
of a ―good mother‖. I find the concept of being a ―good mother‖ particularly interesting
as the phrase was also frequently noted in the general mothering literature, but also
mothering children with special needs or other health impairments and in the g-tube
literature. When referencing the terminology of being a ―good mother‖ each individual
researcher provides either their own definition or assumes the definition is tacitly
understood by the reader. From an occupational science perspective, a good mother has
been defined as being able to create successful child-centered occupations to participate
in with their children (Larson, 2000b). Ruddick (1989) said good mothers may be
thought of as having ―perfect children, perfectly cared for‖ (p. 31). As one mother
described, a good mother is a ―god‖ (Francis-Connolly, 2004, p. 168). The concept of

26

being a ―good mother‖ is often used in reference to understanding why mothers do what
they do when mothering (Larson, 2000a; Ruddick, 1989). Ruddick (1989) explores the
concept of being a ―good mother‖ and the challenges within any child rearing
circumstance to achieve that standard, particularly when mothering an ill child. She
highlights the particular difficulties of negotiating being a ―good mother‖ through
children‘s and mothers‘ times of distress and indecision.
A good mother is in many ways a standard that is unachievable by the majority of
women. However, when realistically defined as having successful parenting experiences
(Olson, 2004), a good mother is a standard mothers may strive to attain on a daily basis.
When considered in those terms, one can understand how maternal competence and
confidence may be undermined by the inability of a mother to be able to successfully
parent her child, specifically related to feeding. Her status may be questioned both
internally and externally when she is not able to successfully perform a basic mothering
occupation, feeding. As Olson stated, ―successful feeding experiences support the
mother‘s developing image of herself as a good mother‖ (2004, p. 34). Mothers may
struggle with the expectations associated with being a good mother, negotiating what that
may mean when the mother is not able to care for or feed her own child. When moving
beyond the meaning of being a mother and into the characteristics of mothering work,
Ruddick‘s (1989) writings are particularly useful when establishing a framework for what
mothering work involves. She contends that maternal work is composed of three
demands, ―preservation, growth, and social acceptance,‖ imposed on a mother by her
social group (Ruddick, 1989, p. 17). Preservation, being of the utmost importance,
involves the protective care that all children require to ensure survival which involves

27

recognizing a child‘s vulnerability and responding with the appropriate care. Appropriate
care includes, but is not limited to acts such as feeding. Growth or nurturance refers to a
mother‘s need to nurture a child‘s emotional and intellectual growth. The third and final
demand of Ruddick‘s description of mothering work is social acceptance. Mothering
skills are held to a standard established by their social groups. The mother‘s social group
demands that mothers ―train‖ their children be meet acceptable societal guidelines (p.
21). These individual demands are further defined in detail by the mother‘s socio-
cultural group that she identifies with and embodies. While the individual demands are
presented separately, they are intertwined, at times supporting each other and at other
times conflicting, further complicating the everyday work and negotiation of mothers. A
mother must provide her child with protective care in order to ensure their survival. For
example, a child will not live without sufficient nutrition. However, a child may simply
survive, without receiving the nurturing and social training that also encompasses
mother‘s daily work. A mother that is only concerned with preservation may not be
meeting the standards of being a ―good mother‖ and be considered a failure at
motherhood.
When situating feeding within mother‘s work as defined by Ruddick (1989),
feeding may be viewed through the lens of all three demands. Children‘s survival
depends on the maternal occupation of feeding. Children must receive adequate
nourishment from a caregiver as they are not capable of self sufficiency. Providing your
child nourishment is a primal need for mothers that enables the child‘s survival. Children
are vulnerable and depending on the circumstances, children with special needs may be
perceived with increased vulnerability. This vulnerability leads to the requirement that

28

someone, typically mothers, must provide their nourishment up to a certain age and for a
population of children with special needs, indefinitely. When this occupation is
complicated by a child‘s inability to consume nutrition in a typical manner, a mother
must adapt an important aspect of her daily routine to meet the nutrient needs of her
child. Appropriate nourishment is a building block for physical, emotional, and
intellectual growth. Mothers understand that their child‘s health and development
depends on adequate caloric intake, so they try as hard as they can to provide their child
appropriate nutrition (Thorne, Radford, & McCormick, 1997).
Occupational Science and Mothering
Occupations are defined within occupational science as ―chunks of culturally and
personally meaningful activity in which humans engage that can be named in the lexicon
of our culture‖ (Clark, et al., 1991). Olson and Esdaile describe mothering as an
occupation that ―requires a minimum of two persons engaged in joint activities or tasks-
the mothering person and the one being mothered‖ (2000, p. 308). The distinction of
mothering as an occupation or mothering being comprised of many occupations has not
been taken up in the occupational science literature. However, I would like to propose
for the purpose of my research that mothering may be thought of as being comprised of a
number of different occupations with feeding being one.
Occupational scientists have taken up the complexities of studying mothering and
mothering occupations. Mothering occupations have been studied with regards to
mothering typical children (Burke, Clark, Hamilton-Dodd, & Kawamoto, 1987; Dyck,
1992; Francis-Connolly, 2000; Hermann, 1990; Pierce, 2000). Occupational scientists
have also branched out to study occupations of specific types of mothers including those

29

who are mothering children with disabilities and special health care needs (Crowe, 1993;
Crowe, VanLeit, Berghmans, & Mann, 1997; Esdaile, 1994; Larson, 1996, 2000b;
Lawlor, 2004; Olson & Esdaile, 2000; Pierce & Frank, 1992). Pierce and Frank (1992)
described the mothering occupations of a woman with an infant with multiple disabilities
from the infant‘s time in the neonatal intensive care unit through the transition to
establishing care at home. The researchers found a woman‘s own understanding of her
occupations directly shaped her involvement with her child. Olson & Esdaile (2000),
examined two mothers with young children with special needs using a phenomenological
approach. The prominent theme they discovered was mothers‘ description of doing
―what I got to do‖ (p. 309). The mothers discussed each in their own way the direct
occupations of mothering such as diapering, feeding, and bathing giving meaning,
structure, and normalcy to their lives. Kellegrew (2000) examined how mothers
construct daily routines for their children with disabilities using ecocultural theory to
assist with analyzing the data. One unique finding to her qualitative study was how on a
daily basis mothers make adjustments in the home to further facilitate their child with a
disability‘s skill development based on the need to accommodate to everyday events.
Larson (1996) analyzed the dimensions of adaptation through a mother-child life history.
As related to the life story of this specific mother with a son with disabilities, adaptation
was a dynamic process that was aimed at meeting her life goals that prioritized her son‘s
well being. Larson (2000b), in a larger qualitative study, described the eight processes of
orchestration of daily occupations mothers of children with special needs used in their
daily lives. This process of orchestration allowed for these mothers to make sense of
their past, organize their present, and plan for their future. The occupational goals of

30

mothers of children with disabilities have been described through a qualitative analysis of
answers on the Canadian Occupational Performance Measure (Donovan, et al., 2005).
The authors found the occupational performance of mothers to be ―constrained by time,
overlaid with difficult emotions, and involving a desire for increased social contact‖ (p.
249).
The research provided within occupational science begins to offer insight into the
lives of women mothering and mothering children with special needs. Occupational
scientists have also contributed to current trends of studying individual mother
perspectives. However, the research has neglected examining one of mothers‘ primary
occupations, feeding their children. Looking at mothers who have children with feeding
challenges, specifically g-tubes, provides a window to not only further understand
mothering occupations, but more specifically a mothering occupation that is primary to
their identity as a mother. It also provides an opportunity to examine how mothering
occupations may shift to accommodate the changing needs of her child.
Mothering a Child with Special Needs
Mothering a child with special needs has been researched from a number of
perspectives in a variety of disciplines. For the focus of this project, select studies from
mothering children with disabilities were reviewed to begin to create a foundation for my
research questions. Of particular interest is the literature focusing on individual
mothering perspectives addressing mothering young children with special needs.
Children with g-tubes bridge across both discourses of children with disabilities and
children with medical needs. The association of the two discourses is influenced by the
child‘s underlying diagnosis, but also how quickly the child and mother moved away

31

from the medical experiences into potentially the world of children with special needs.
Mothering a child with a g-tube within a medical or development disabilities framework
influences mothering experiences and occupations.
Nelson (2002) did a metasynthesis of recent qualitative studies related to the
mothering of children that she called ―other-than-normal‖ children (p. 515). Although it
was not clearly defined, I would suggest that the terminology other-than-normal was
meant to encompass the wide range of children in her analysis of studies including
diagnosis ranging from children with attention deficit disorder, schizophrenia, asthma,
traumatic brain injury, and children being described as ―technology dependent‖ to just
name a few. Nelson concluded from her analysis of the qualitative studies that the
process of mothering other-than-normal children occurred in four steps: becoming the
mother of a disabled child, negotiating a new kind of mothering, dealing with life-it will
never be the same, and the process of acceptance and denial.
I am particularly interested in the category of ―negotiating a new kind of
mothering‖ (Nelson, 2002, p. 522). Research has documented in the face of parenting a
child with a disability, practices and daily activities will shift (Bluebond-Langer, 1996;
Guerriere & McKeever, 1997; Nelson, 2002). The shift in practices is typically attributed
to the child inquiring the initial disability, illness and change in health or developmental
status. Mothering needs to be an adaptive process as partially dictated by your child‘s
needs. Having a child with feeding challenges presents an opportunity to explore how
mothering occupations may shift when having to feed a child with a g-tube or possibly
even creating new feeding related occupations for a mother.

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Historically, research has focused on the ―burden‖ of mothering a child with
special needs and the emotional and physical drain on the caregiver. It has been well
documented how mother‘s lives are significantly altered as they are primarily responsible
for the care of their children and received limited support (Nelson, 2002). Mothers are
often described as experiencing physical and social isolation, being forced to change their
employment status, and being burdened with the physical and emotional demands of
caring for a child with special needs (Bluebond-Langer, 1996; Bower & Hayes, 1998;
Donovan, et al., 2005; Petr, et al., 1995; Townsley & Robinson, 2000).
Green (2007) explored the social experiences of mothering children with
disabilities. She summarized that while the majority of research on parenting children
with special needs has focused on the emotional distress and burden while ignoring the
socio-structural constraints. In her study, Green concludes that most mothers are more
significantly impacted by the socio-structural constraints versus the emotional distress.
In spite of those constraints, mothers were still able to identify positive aspects of
parenting a child with a disability. A small portion of the literature has begun to
acknowledge a more holistic experience of mothering children with special needs,
including the perceived burden and rewards. However, it has only scratched the surface.
Normalcy is a prevalent topic in literature related to mothering a child with
special needs. A mother‘s desire for her child to achieve a level of normalcy is well
documented (Bluebond-Langer, 1996; Judson, 2004; Larson, 1998; Nelson, 2002; Olson
& Esdaile, 2000; Thorne, Radford, & McCormick, 1997). Eating or feeding your child is
one of the ways parents are able to achieve normalcy (Kellegrew, 2000). As quoted from
McKeever‘s study (as cited in Nelson, 2002, p. 527) with mothers with children with g-

33

tubes, one parent reported, ―Although she didn‘t eat well, it was the only normal thing
she did. I would rather sit for three hours feeding her with a demitasse spoon than hook
her up to the pump‖. While the importance of normalcy is frequently addressed, how
mothers may attempt to achieve it through feeding has not been explored whether it be
through oral or g-tube feedings.
Cultural Influences on Mothering
The cultural context must be considered when discussing mothering practices.
Current literature discusses mothering as being culturally driven, defined by the cultural
context and time (Francis-Connolly, 2004; Glenn, 1994; Llewellyn & McConnell, 2004).
Cultural differences in mothering practices have been well documented in a number of
different disciplines. Glenn (1994) has done an extensive historical review that has
documented how influential the larger socio-culture context has been on day to day
mothering practices. She asserts that mothering is determined by the historical, social,
and cultural context within women mother and the agency they assert within these larger
forces. Glenn‘s review highlights studies that have examined mothering practices within
alternative constructions of motherhood often emphasizing the variation versus the
universals. Glenn‘s work is particularly helpful in situating mothering within their
particular social and cultural context. The mothers in my study are mothering in unique
situations. It has been suggested that families are more influenced by their culture
backgrounds than the differences created by having a child with special needs
(Gallimore, Weisner, Kaufman, & Bernheimer, 1989). A family‘s parenting practices
tend to be more similar to other families with similar cultural influences versus other
families in similar parenting experiences.

34

Over the years Harkness and Super (1996, 2000) have done a number of cross-
cultural studies that have well documented the cultural differences in mothering. They
have proposed a theoretical framework, developmental niche, for understanding the
interface between children and culture. The framework consists of three subsystems: 1)
the physical and social setting of the child, 2) culturally regulated customs of child care,
and 3) the psychology of the caretakers. From this third component comes the principle
of parental ethnotheories. According to Harkness and Super, parental ethnotheories in its
simplest explanation would be ―parents‘ cultural belief systems,‖ through which
―elements of the larger culture are filtered‖ (Harkness & Super, 2000, p. 63). Harkness
and Super have collaborated on years of cross-cultural research to support their
developmental framework. They have used daily parenting practices across a variety of
western societies as observed, described, and reported to further understand the implicit
cultural practices of parents as related to child rearing. Mothers with children with g-
tubes are impacted not only by the greater sociocultural context in which they live, but
also by their own implicit parenting practices. The concept of parental ethnotheories can
be used to further understand the considerable impact that culture has on the parenting
practices of mothers of children with g-tubes.
Occupational scientists also frequently highlight the cultural influences on the
mothering occupations of the individuals in their studies. A mother‘s cultural
background will impact her mothering occupations, including, but not limited to feeding.
Mothers‘ feeding practices and how feeding a child with a g-tube becomes embedded in
daily practice is also influenced by her cultural background. Olson (2004) suggests when
a mother is not able to follow through with these practices as supported by her cultural

35

influences, it create stress and maternal conflict. Mothers own cultural experiences
overtly influence the way they mother their own children (Dunbar & Roberts, 2006) and
the day to day occupational choices they make (Pierce, 2000). After her work with
mothers, Griffin concluded that each mother will have her own ―culture of mothering,‖
which needs to be taken into consideration (2004, p. 70). Considering each individual
mother‘s ―culture of mothering‖ within her family, allows me to reflect upon the greater
cultural influence in combination with the mother‘s individual agency within that culture
and how they interact to create mothering practices.
Mother-Child Interactions
Feeding one‘s child is a primary mothering occupation. It is an interactive
process embedded in a mother-child relationship. Feeding your child can often become
intertwined with nurturance and love that a mother provides. A mother begins to develop
an internal competency of being able to care for and feed her child, possibly even before
the child is born (Ruddick, 1989). Feeding has great symbolic significance and has
multiple meanings for mothers beyond obtaining adequate nutrition (Olson, 2004; Satter,
2000; Townsley & Robinson, 2000). A child‘s nutritional status and physical well-being
are often even considered to be reflections of a mother‘s ability to care for her child
(Apple, 1981; DeVault, 1991; Pridham, et al., 1999).
Feeding may constitute the majority of a mothers interactions with her child,
particularly in infancy. It provides an opportunity for the reciprocal engagement needed
for mothers to connect with their infants. Due to the proximity and nature of the feeding
experience, mothers spend more time holding, touching, having body contact, and
looking at their infants, demonstrating increased interactive behaviors than during non-

36

feeding experiences (Holditch-Davis, et al., 2000). Embedded in the feeding experience
is the opportunity for the mother to respond to the child‘s cues by providing nourishment
in an emotionally and physically supportive manner. The child also begins to learn they
are being heard and understood by their caregiver. Satter (2000) goes as far to say that
―feeding provides such a concrete laboratory for the parent-child relationship overall‖ (p.
9). She concludes that in order to do a ―good job with feeding-and with parenting-you
need to understand feeding dynamics, nutrition, child development, and positive family
interaction‖ (p. 10).
Attachment
While attachment is not the primary focus of my study, the role attachment plays
in the mother-child experiences around non-oral feeding must be considered. Attachment
is based on relationship security between a mother and her child (Bowlby, 1988). Mary
Ainsworth (1969), a pioneer in attachment research, used feeding scenarios to capture
mother-child interactions that might reflect that secure relationship. She observed
mothers feeding their children to identify parent and child sensitivity and responsiveness.
An instrumental part of a relationship between a mother and her young child is feeding.
Feeding provides essential nutrition, but also provides a means for development of the
mother-child relationship (Humphry, 1991; Satter, 1990). From the very beginning,
feeding serves as a process to begin attachment. At birth, the infant is placed on the
mother‘s chest and the infant will frequently locate the mother‘s breast and initiate the
first feeding (Kennell & McGrath, 2005; Satter, 2000). This interaction sets off a
number of physiological processes that impact both the mother and child in a positive

37

manner, beginning the process of attachment for many dyads (Kennell & McGrath,
2005).
Literature supports and describes how feeding plays a role in establishing a
secure attachment between a mother and her child while impacting their overall
relationship. However, there is sparse information published to discuss how lack of oral
feeding impacts a mother-child relationship.
Co-occupations
I have purposely chosen to place the discussion of the current literature as related
to co-occupations within the larger context of mother-child interactions versus
occupational science. Co-occupation is a phrase that has been coined and primarily
discussed within occupational science literature, which will be reviewed. However, as
the concept becomes expanded to better represent the dynamic interactions that occur
between a mother and a child, it may more appropriately be situated within the broader
context of mother-child interactions. Within the occupational science literature, co-
occupations has primarily been addressed within the context of mother-child interactions
(Dunlea, 1996; Esdaile, 2004; Olson, 2004; Pierce, 2000; Pierce & Marshall, 2004;
Primeau, 1998; Segal, 1996; Spitzer, 2001, 2003; Zemke & Clark, 1996b). Co-
occupations have been described and defined in varying manners depending on the
context. Zemke and Clark (1996a) described co-occupations as being the ―most deeply
social occupations‖ and ―by their very nature require more than one person‘s
involvement‖ (p. 213). They go further to say that both individuals must be defined as
active participants for the activity to meet the criterion for co-occupations. Spitzer (2003)
built on the concept on Zemke and Clark‘s description of co-occupations. She uses the

38

terminology ―joint occupational framing‖ to describe a concept similar to co-occupation
when referring to her research with young children with autism with limited verbal
communication. She defines joint occupational framing as an ―intersubjective process in
which the occupation is defined by two people,‖ ―in which one person can come to
understand another‘s occupation‖ (p. 67). Dunlea (1996) in her research with mothers
with infants who are blind, discusses how the daily interactive routines in mother and
infants‘ lives are important co-occupations on which infants began to experience the
world. Esdaile (2004) asserts that play between a mother and child can be a co-
occupation. The play must be a ―reciprocal, synchronized interaction between mother
and child that is, at best, child directed‖ (p. 99). Pierce and Marshall (2004) take a
different approach by defining co-occupations with an emphasis on the spatial and
temporal intersection of occupational patterns versus emphasizing their social
components. They define co-occupations as ―the way in which two individuals‘
occupational patterns can require and be shaped by each other‖ (p. 75).
Mothering occupations have been described in themselves as being co-
occupations (Olson & Esdaile, 2000). Olson (2004) uses the concept of co-occupations
to frame her discussion of mothering occupations with young children, specifically
feeding, sleeping, and comforting. However, when discussing each individual
occupation, she separates the mother-child dyad, which may in essence go against the
general definition of co-occupation. However, in doing so, she clearly identifies the
characteristics that both the mother and infant bring to the varying occupations and how
these differences shape the progression and eventually success. The complexity of
feeding is showcased as to how small differences within the environment, mother, and

39

child may interfere with the child‘s ability to self-regulate and a mother‘s ability to be
available for sustained participation in a co-occupation. The sustainability of a mother-
child co-occupation with reciprocal engagement may be challenged when the child‘s cues
are difficult to interpret or the adult is unable to provide adequate interpretation (Esdaile,
2004; Olson, 2004). In Dunlea‘s (1996) work, mother/infant dyads demonstrated co-
adaptation skills to enable them to participate in what may be described as co-
occupations involving reciprocal engagement. Infants turned toward their mother‘s face
not by a visual cue, but by auditory and tactile cues. Mothers were able to adapt their
behavior by responding with increase tactile responses versus visual engagement than do
mothers with children without visual impairments.
Similarities and differences may be seen in all of these attempts to define and
clarify the concept of co-occupations while clearly reflecting the focus of the researcher.
Many of the researchers emphasizing the necessary social component as laid out early on
by Zemke and Clark (1996a). I argue that while these researchers‘ work may describe an
activity that two people may be engaged in, specifically a mother and child, it does not
adequately capture the richness that one may experience when participating in or
observing a mother and child in reciprocal engagement through an activity.
Feeding co-occupations will require reciprocal engagement to occur between the
feeding dyad. The process of creating feeding co-occupations involves the feeder and
child to co-construct the feeding experience. The feeder and the child‘s actions are
dependent on each other. Drawing up the work of Daniel Stern (1994), Lawlor (2003)
utilizes the terminology of ―being with‖ (p. 430) when describing the interconnectedness
of a therapist and child during a therapy session. Their ―being with‖ each other allows

40

for a co-construction of a therapy session with an element of closeness and
interconnectedness that is almost difficult to describe. I argue that a mother and child
would need to have a similar interconnectedness in order to build a feeding exchange that
would have the important quality of reciprocal engagement.
The Social Nature of Feeding
Food and family meals have historically held great significance. Quality time for
families as described by Gillis (1996) often included food. Family time was created
around Sunday dinners and special events such as birthdays and holidays that involve
food and family eating. The act of eating together provides an opportunity on which
many other meaningful activities may be layered. It serves as a method to maintain
family culture and convey cultural relevant information (DeVault, 1991). While doing
research with families with children with special needs, Segal (1999) found family
occupations, often dinner, as being instrumental to convey social-cultural and family
values. Family occupations occurring when the ―whole family is engaged in an
occupation together‖ (Segal, 1999, p. 1). Mealtime provides an opportunity for families
to connect and communicate about daily experiences along with sharing and teaching
each other valuable information. It serves as a vehicle for creating and building a family
unit (DeVault, 1991). Family mealtime may be thought of not only as nourishing and
promoting physical development, but also intellectual, emotional, and cultural
development.
In today‘s society with complicated familial schedules, it continues to be a
priority for mothers to have their family eat meals together (DeVault, 1991). However,
family meals and how they actually occur may take on a variable meaning depending on

41

the culture of each individual family. A family meal may vary from all members of the
family sitting down together sharing the same food to just the children eating different
foods in front of the TV that the mother picked up from a fast food restaurant. It is
important to consider the meaning that all the differing styles of family meals may have
within their individual family culture as feeding and mealtime is shaped by families‘
individual and larger cultural backgrounds (Olson, 2004).
There is very limited information available in the literature reflecting how having
a child with special needs, specifically a g-tube, impacts family meals and a mother‘s
occupation surrounding meal times or even more specifically how children with g-tubes
may or may not be typically included in family meals.
Family mealtime experiences and routines surrounding meals are significantly
impacted by having a child with a g-tube (Sullivan, et al., 2004). The dynamics of a
family meal are going to change as not all family members are going to be able to
participate in the same manner. While documented in the literature that it continues to be
a priority for families to share a family meal, it is important to see how having a child
with a g-tube impacts that desire and in turn how mothers may negotiate to construct an
atypical, typical family meal time experience.

42

Chapter 3: Methodology
Assumptions
In this chapter, I provide a description of the research study and the qualitative
research methodology that was used. The study is grounded in literature related to
occupation, mothering, studies related to gastrostomies, qualitative methods, and
narrative analysis. It is grounded in the following assumptions based on the literature
review:
1. Mothering work is typically done by the women in the home; therefore the mothers
in the family will primarily serve as the key informants for the study (Bowlby,
1988; Crowe, et al., 1997; Dyck, 1992; Judson, 2004; Olson, 2004; Ruddick, 1989;
Sullivan, et al., 2004; Sullivan, Juszczak, Lamber, Rose, & Ford-Adams, 2002;
Sullivan, et al., 2000).
2. Mothers have preconceived ideas of what is like to be a ―good mother‖ (Ruddick,
1989). These ideas shape how they will participate in co-occupations including, but
not limited to feeding.
3. Mothers frequently have a sense of failure and inadequacy when they are not able to
effectively feed their own child (Campbell, 1988; Craig, 2003; Donovan, et al.,
2005; Holditch-Davis, et al., 2000; Humphry, 1991; Judson, 2004; Pridham, et al.,
1999; Sleigh, 2005; Spalding & McKeever, 1998; Thorne, Radford, & Armstrong,
1997; Thorne, Radford, & McCormick, 1997).
4. Feeding is an important aspect of a mother-child relationship (Humphry, 1991;
Judson, 2004; Satter, 2000).

43

5. Oral and gastrostomy feedings have multiple meanings for mothers and signify
much more than simply obtaining adequate nutrition (Craig, 2003; DeVault, 1991;
Guerriere, et al., 2003; Judson, 2004; Spalding & McKeever, 1998; Thorne,
Radford, & McCormick, 1997).
6. The placement of a gastrostomy in a child carries individual meaning to each
mother and impacts how she participates in parenting occupations (Craig, 2003).
7. The placement of a gastrostomy can be considered an invasion of the physical body
(Campbell, 1988; Guerriere, et al., 2003).
8. Immediately following a gastrostomy placement there is a period of instability,
which involves resolving post-operative complications and allowing families to
become physically accustomed to the new method of feeding, which is
approximately six months (Sleigh, 2005; Sullivan, et al., 2004).
9. Extensive amounts of time are spent on feeding occupations before and after a
gastrostomy is placed with children with feeding challenges (Craig, 2003; Donovan,
et al., 2005; Enrione, et al., 2005; Spalding & McKeever, 1998).
10. Once a child receives a gastrostomy, the mother must learn new occupations for
caring for her child with regards to direct care taking along with more peripheral
caretaking such as ordering equipment and management of support systems such as
nursing. The mother‘s time spent in different levels of caretaking may shift (Craig,
2003; Enrione, et al., 2005; Petr, et al., 1995; Ratliffe, et al., 2002; Sleigh, 2005).
11. Feeding a child by a gastrostomy medicalizes the feeding process (Brotherson, et
al., 1995; Craig, 2003; Thorne, Radford, & McCormick, 1997).

44

12. A child‘s medical and health conditions along with their cognitive functioning may
shape how gastrostomy feedings are performed.
13. A gastrostomy can be stigmatizing to families and their children (Campbell, 1988;
Craig & Scambler, 2005; Enrione, et al., 2005).
14. Even when a child is consuming the majority of their calories by a gastrostomy,
mothers continue to want to include them in the social experience of eating and
participate in typically eating behaviors (Guerriere, et al., 2003; Sullivan, et al.,
2004; Thorne, Radford, & McCormick, 1997; Townsley & Robinson, 2000).
15. Feeding a child by a gastrostomy may remove the child from the natural social
experiences surrounding feeding and family meal times (DeVault, 1991).
16. Mothers need to work to find ways to have their children participate in family and
social meal experiences when they are fed by a gastrostomy (Thorne, Radford, &
McCormick, 1997; Townsley & Robinson, 2000).
17. Frequently when a child receives a gastrostomy there is an introduction of other
caregivers into the child‘s life around the process of oral and non-oral feeding
experiences. These individuals, such as nurses, nannies, and extended family,
impact the mother/child relationship along with the mother‘s daily occupations
(Petr, et al., 1995; Ratliffe, et al., 2002; Sleigh, 2005; Traustadonttir, 1991).
18. Mothers and their young children share occupations, specifically around activities
of daily living (Dunlea, 1996; Esdaile, 2004; Olson, 2004).
Selection of Methods
Qualitative research methods are the most appropriate to address my research
questions as they are best structured to study the complexities of mothering children with

45

gastrostomies. Open ended and narrative interviewing allowed the researcher to become
familiar with the family culture of mothers and children with gastrostomies. Narrative
and thematic analysis were primarily used to analyze the data.
Story telling is a natural way for humans to convey information to each other
(Riessman, 1993). When studying human experience, it makes sense to utilize
individual‘s firsthand account of that experience as data. Narrative allows for individuals
to embody an experience and convey it to others emphasizing the meaningful portions of
that story. Frequently, when telling a narrative, the narrator will choose specific portions
of the story, particularly when there has been a breach between the expected and the
actual occurrences (Mattingly & Lawlor, 2000; Riessman, 1993).
My research questions were structured to study meaningful experiences of
mothering, strategies associated with feeding children with gastrostomies and how it not
only impacted the mother-child relationship, but also her identity as a mother. Narrative
interviewing allowed the mothers to describe the interactions that occurred around
feeding for their child. They also were able to discuss how their experience of feeding
their child then impacted their mothering. This type of interviewing also allowed
mothers to situate the children‘s g-tube and feeding within the greater context of their
lives. The informants were provided an opportunity to share their narratives and a way to
make sense of their experience through the story (Mattingly & Garro, 2000).
Participants in the Study
I had seven mothers as key informants. The number of families was determined
by the richness in data obtained with regards to my research questions. Selection
criterion as related to the mothers, my key informants, was as follows:

46

(1) must have a child who has had a g-tube for at least six months and
received at least 51% of their nutrients by the g-tube,
(2) must be the biological mother of the child with a g-tube,
(3) must be able to understand and speak English fluently,
(4) must be in reasonable geographic location for data collection,
(5) must be able to commit to the time requirements laid out in the study‘s
proposal.
Most often in research and literature reviews, the mother is the primary caregiver
that is responsible for the occupations that I considered in this study (Bowlby, 1988;
Crowe, et al., 1997; Dyck, 1992; Sullivan, et al., 2004; Sullivan, et al., 2002; Sullivan, et
al., 2000). The mother is responsible for ensuring their children‘s physical,
psychological, and social needs are met. However, there is a body of literature that is
evolving regarding other primary caregivers such as fathers and nurses, specifically
related to feeding the child with special needs (Coffman, 1997; Fagerskiold, Timpka, &
Ek, 2003; Thorne, Radford, & McCormick, 1997). However, for the purpose of this
study, the primary informants were all mothers.
Each family in the study had at least one child who received the majority of their
nutrition by a gastrostomy. For this study, the majority of nutrition by a gastrostomy was
defined as receiving at least 51% of their calories by a gastrostomy. Families who had
children who were currently receiving their calories by a naso-gastric tube (NG tube)
were not considered for the study. Frequently children who have NG tubes are thought
be in transition between oral feeding and a gastrostomy tube. Due to the varying
circumstances that may warrant an NG tube in a child, these families were not considered

47

for the study. The child must have had their gastrostomy for at least six months. The
research study focused on every day experiences between a mother and child around
feeding, including oral and non-oral feeding experiences. It was anticipated that families
with children that have had a gastrostomy for less than six months may still be resolving
post-operative challenges (Sleigh, 2005). The families would still be learning how to use
and care for the gastrostomy. They may also still be acutely involved in organizing
supportive care such as nursing for their child and acquiring the on-going needed supplies
required for gastrostomy use.
Participants were selected to achieve maximum variation. The strategy allowed
for a heterogeneous sample of participants (Morse, 1998). It created an opportunity for
observing and discovering commonalities across a diverse group of participants‘
experiences. I also used a sample of convenience. Within that sample, I attempted to
have a degree of variation along certain parameters that will be discussed. However, it is
understood that the variation will not necessarily be representative of the larger group of
participants that I selected from (Stake, 1998).
I recruited mothers from therapy clinics and interventionists within 1-2 hours of
Los Angeles. I posted flyers at local clinics and sent flyers to private practitioners in the
community. I also personally contacted practitioners at the local therapy clinics. As an
occupational therapist working in this geographic area for a number of years, I was able
to obtain sufficient referrals of families that were willing to participate in my research.
The participants in my study had widely varying attributes that were obvious upon
recruitment and emerged throughout the study. There were specific attributes of interest
of the children and families that were particularly relevant to the study. I attempted to

48

choose families that represented a variety of these characteristics. The composition of the
family and their specific attributes did impact the responsibilities of the mother, which
will be discussed.
The number of children the mother had along with the support system that she had
in the household, such as a husband, live-in partner, extended family member at least
partially dictated the type and amount of responsibility that she must undertake with
regards to her mothering work. All of the mothers were married with their husband being
the father of all of their children and reportedly involved at varying levels with the care of
the children. The birth order was thought to be particularly relevant. If a mother has
already had the experience of feeding a child with typical feeding behaviors, her previous
experiences shape her expectations and knowledge of feeding with her child with the
gastrostomy. If the child with a gastrostomy is the first born, the mother may have
brought fewer preconceived ideas about how to feed her child and have less experience
with mothering in general. Three of the mothers only had the one child. Three of the
mothers had two children and one mother had four children. The child with the
gastrostomy tube was the youngest child for all of the women who had more than one
child, which could have been a coincidence, but was particularly interesting. Two of the
mothers that only had the one child brought up the possibility of having more children,
but only when they were able to see how their only child was going to do with regards to
their identified needs.
The child‘s cognitive ability was also considered. One aspect of the study was the
mother‘s strategies to construct meaning and routines around oral and non-oral feeding
experiences. A child‘s cognitive ability impacts the ways they elicit their mother‘s

49

attention and in turn the sophistication of their response to their mother‘s overtures. I had
children with varying cognitive abilities in the study and considered that attribute when
examining the data. I was able to meet and spend at least a small amount of time within
the context of the interview with all the children. I am only able to comment on the
children‘s cognitive levels from what I observed during my interactions and the mother‘s
report. I would assess the children had a highly variable level of developmental and
cognitive abilities. At least one of the older children was in a typical preschool setting
and at least one other child was quite involved both physically and cognitively. The other
five children were scattered in between the two extremes.
The meaning of a g-tube to a family often depends on the context in which it was
introduced to a family (Spalding & McKeever, 1998; Thorne, Radford, & McCormick,
1997). If the g-tube was introduced to a child and family in early infancy or after a
traumatic accident, it often may be portrayed as a life saving device that not only gives a
child life, but allows parents to assume other parenting responsibilities in a more timely
fashion. However, if the g-tube is introduced to a child and family later in life for
example due to a developmental disability, the g-tube may be viewed as a sign of
regression and giving up hope on a child‘s oral eating skills. The circumstances under
which the g-tube was placed was considered and sampled with some variation. Two of
the children in the study received their g-tubes soon after birth before they left the NICU.
Three of the children received their g-tubes from months to years after they left the
NICU, but the rationale for the g-tube placement continued to be related to the primary
diagnosis or difficulties experienced since birth. Two of the children received their g-
tubes as related to a complication emergent after birth.

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A select group of children with gastrostomies receive feeding therapy intervention
to directly address their challenges associated with oral feeding. Feeding therapy impacts
how oral feeding occurs for that particular child. Feeding therapy will influence a
mother‘s goals and perceptions around oral and non-oral experiences. It may arguably
even shape how gastrostomy feedings take place. For example, one mother talked about
how she specifically did her child‘s feedings in the highchair in the kitchen while her
other children were eating along with providing the child preferred foods. This mother
reported that her feeding therapist had recommended that the oral and g-tube feedings
occur in this manner to associate positive experiences of eating with getting full from the
g-tube feeding. Clearly, being involved in feeding therapy may influence the mother-
child relationship and possibly direct mothering occupations that occur related to feeding.
All of the children were currently involved in feeding therapy or had been involved in the
recent past. Four families were currently participating in direct feeding therapy
intervention. The feeding intervention all had been provided by different therapy
organizations, so none of the children were or had received therapy from the same agency
or individual.
There were many other descriptors of the participants of the study that
undoubtedly impacted the results of the study. However, these factors are not the main
focus. They were considered when reviewing the data and results, but were not
controlled for when recruiting participants. Since my sampling strategy was one of
maximum variation, the variance of these factors may have contributed to the richness of
my findings. Some of the these characteristics that were noted in the results, but not
controlled for are the gender and age of the child, age of the mother, ethnicity, and socio-

51

economic status of the family. The attributes that may appear to have more significantly
impacted the mother and her stories are then highlighted in the individual stories of each
mother and child.
Culture undoubtedly had a significant impact on the families and therefore the
results of this study. I fully acknowledge the overwhelming influence of culture at many
different levels on feeding and related occupations. The cultural influences were
considered while collecting and analyzing data and discussed as revealed through the
family stories and throughout analysis. The cultural background of the families was not a
part of the criteria considered when recruiting families. Instead, culture was viewed
through the lens of each individual family in the study. A summary of inclusion criteria,
exclusion criteria, and characteristics for consideration are summarized in Table 1.

52

Table 1. Participant Criteria Summary
Inclusion Criteria Characteristics for
Consideration of
Evaluation for Variation
Exclusion Criteria
Must be the biological
mother of a child with a g-
tube
Live-in support
system for mother
Child uses NG-Tube
Child receives at least
51% of calories by g-tube
Number of
children in the family
Child is or has been
a client at Pasadena Child
Development Associates
Child has had their g-
tube for at least six months
Birth order of
children
Child that I have
provided services to in the
past
Must be in reasonable
geographic location for data
collection
Must be in reasonable
geographic location for data
collection
Circumstances
surrounding g-tube
insertion
Circumstances
surrounding g-tube
insertion

Must be able to
commit to the time
requirements laid out in the
study‘s proposal
Child‘s
participation in therapy
Must be able to
provide informed consent
Diagnosis, gender,
and age of child
Mother‘s age
Culture
Ethnicity
Socio-economic
status

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The mothers who agreed to participate in the study were very generous with their
time, although their schedules were at times challenging. The primary difficulty with
establishing interview times was children being ill. A number of interviews needed to be
rescheduled or postponed due to child illness. Families that I had personally worked with
or previously have received any type of intervention at Pasadena Child Development
Associates were not candidates for the study.
Human Rights and Informed Consent
I received approval from the Institutional Review Board (IRB) at the University
of Southern California for the research project. After the mother was referred to me as
possibly being interested in being a participant in the study, I contacted her or she directly
contacted me by email or phone, depending on her personal preference. I explained why
their specific family was recruited and that the participation was voluntary. I also
explained the time involved for the individual interviews. My role in the research was
discussed. If they agreed to participate in the research, we set up the first interview.
Before the first interview began, I went over the informed consent with the mother. Once
we finished going over the consent, I asked the mother to sign it. I described how the
information they shared would be kept confidential. I also explained how the written
records would be kept and used in a manner to maintain their confidentiality.
Phases and Procedures for Methods
Qualitative interviews were done to collect data. Although, observations were not
directly scheduled, there was a level of observation that occurred around the interviews
that was documented in my field notes. The interviews were done in a manner to allow
flexibility for the participants and adequate time to cover topics. When each interview

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was scheduled, a mutually agreed upon length of time was established, typically one to
two hours. The data was gathered through field notes, audiotaping of interviews with
mothers, and other relevant data that mothers shared with me. The focus of my research
was how a mother constructs feeding experiences with her child who has a g-tube. I was
interested in the activities that emerged out of initially unfamiliar and unanticipated
feeding experiences around gastrostomy feeding. The explicit manners in which mothers
described how they feed their child while maintaining engagement were explored. In
addition, how the mothers continued to involve the child in the family‘s culture of
mealtime and eating was explored.
An interview guide was used during the study. Narrative interviewing techniques
were used to establish the interview guide. The questions were structured to be open
ended to facilitate an opportunity for personal story telling. They were aimed at eliciting
specific types of stories around relevant topics while still providing the flexibility
required to encourage informants to get started and then focus on stories that are
significant to their own experiences (Riessman, 1993). The topics evolved around the
experiences of mothering children with g-tubes. The questions elicited information
regarding daily activities of mothering, emphasizing the activities associated with oral
and non-oral feedings of her child. Within the mother‘s narrative, information was also
gathered with respect to her relationship with her child, how her child‘s feeding
challenges have impacted her mothering occupations, the social and cultural influences
on her mothering occupations related to feeding, and her expectations and challenges
associated with mothering a child with a g-tube.

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The questions used in the interview guide are listed below.
1. Tell me the story about (child‘s name).
2. What would you like me to know about (child‘s name).
3. Tell me how you came to understand that your child had a feeding problem.
4. I would like to understand what life was like before your child had a g-tube.
5. Tell me about when (child‘s name) got their g-tube and the time after.
6. I would like to know more about how (child‘s name) is involved in mealtimes.
Tell me about (insert last meal before interview). Describe their participation.
7. Describe the most recent time you fed (child‘s name) by g-tube.
8. Does your child eat by mouth? Tell me about (the child‘s last oral meal).
9. How has it been for you to mother (child‘s name)?
10. What ways, if any, has your mothering been affected by your child having a
feeding tube?
11. Describe (child‘s name) participation in the last family gathering or your
family going out to dinner.
12. What have you learned from (child‘s name)?
13. Have you found that you get a lot of advice or support from family members?
14. Are there things that you would want to share with other mothers? What
would you share with others regarding (child‘s name)?
15. When you look ahead what kinds of things are you thinking about in
relationship to feeding and the g-tube for (child‘s name)?
The interview guide serves as an example of the kinds of questions that were used
in the interviews. The interview guide was brought to each initial interview and then

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used again in follow up interviews with each mother as needed. The interview guides
were incredibly useful. The questions allowed me a consistent way to begin to elicit
mother‘s stories, but then also served as a broad guide to further shape questions for
individual mothers as the interviews progressed and eventually new questions naturally
emerged. I also used probes and follow up questions, such as ―tell me more about that,‖
―please give me an example,‖ ―is there anything else?‖, to gain as much information as
possible on a particular story.
Throughout the interviews, basic information regarding the mother, child, and
family was obtained, but rarely if ever directly asked. I attempted to gather the following
information within the narrative interviews with follow up questions and clarification for
specifics. The following is a list of some of the information that was obtained: mother‘s
age, education level, occupation, and marital status, the child‘s age, diagnosis, medical
history, date of g-tube insertion, approximate percentage of calories received by g-tube,
therapies received, other individuals that reside in the home, and age, sex, and diagnosis
of siblings, if applicable.
The process of gathering data progressed through two phases to ensure that I
obtained a wealth of accurate data from the participants. While I describe the research as
occurring in phases, the process did take place in a fluid manner guided by my data
collection. The first phase of data collection begun with obtaining informed consent from
the participants and explaining the purpose of the research study. Once consent was
obtained, the initial phase included the initial two interviews with the mother that
typically lasted approximately one to two hours each to gather initial data and get to
know the families. A few of the families wanted to show me other documents or artifacts

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in their home throughout the course of the interviews. This type of information was not
essential, but was included as additional data if the family provided it to the researcher.
The first phase of the research provided me the opportunity to begin to gather information
regarding the mothers‘ activities surrounding her child with a g-tube and related
experiences. An effort was made to minimize inconveniences and disruptions to the
family practices while scheduling and doing the interviews. Although, observations were
not a primary focus of the proposed research, it was unavoidable that a level of
observations occurred by the researcher around scheduled interviews, which was
documented as a part of my field notes.
Time was taken to analyze and begin coding the data to decide if enough
information had been gathered with the participants to begin to identify reappearing
themes (Krefting, 1991). I continually went back and forth between data and analysis
throughout the data collection period with assistance from my advisor to guide
appropriate follow up questions and determine how many interviews were needed for
each mother. The analysis was reviewed with my committee advisor and other doctoral
students in a study group using qualitative methods before the final decision was made
that enough data had been collected to adequately the answer initial and emergent
questions (Fetterman, 1998). During this phase of data collection, specific interviews
took place in an attempt to answer questions that emerged while reviewing data and
increased the depth of information around topics that appeared to be lacking substance. It
was difficult to predict the exact number of interviews needed with key informants to
acquire the data needed to provide the ―thick description‖ that was desired (Geertz,
1973). All key informants were interviewed a minimum of two times with each

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interview lasting about two hours with one to two additional interviews with specific
informants when necessary. A total of eighteen interviews were completed.
During the research study, all conversations were audio taped and then transcribed
verbatim in a timely manner. Field notes were also taken after each interview. Once
contact with mothers was established, I had difficulty at times, getting the tape recorder
turned on before they began talking. Mothers often attempted to tell me just one or two
more stories as I tried to leave the house or as they walked me to my car. A handful of
times, I actually turned the recorder back on in attempt to capture relevant information on
tape. Two times, mothers actually requested that I turn the recorder back on before they
told the story as they thought it was important.
At the conclusion of data collection from each family, a formal exit from the field
was planned. Each family was informed by the researcher that data collection had been
completed. Families would be contacted if the researcher has further questions that arose
during data analysis. Each family was thanked and given a compensatory gift.
Data management. The primary data to be analyzed in this study was field
notes, transcribed interviews and reflections. Data transcriptions were done by me and
also a professional transcription company. All interviews with the mothers were audio
taped. The audio taped interviews were transcribed verbatim. Following all interviews,
detailed field notes were written. Field notes included observations, descriptions of
experiences, and reflections on those experiences. The field notes assisted in recollection
of details from the interviews and observations and provided additional data that was not
recorded by the tape recorder. The field notes also provided a place for thoughts and
impressions that emerged throughout the data collection. Pseudonyms were used when

59

doing all verbatim transcriptions of interviews. Field notes and all other written
transcripts used pseudonyms. A coding sheet with the participant‘s name was stored in a
different location than the audiotapes, transcriptions, and field notes. To maintain
confidentiality, all identifying information was concealed.
Reflexivity. As discussed in the first chapter, I as a researcher brought my own
perceptions to the research process through my personal and professional experiences. It
was essential for me to be aware of how these experiences were impacting varying
aspects of my research. According to Guba and Lincoln (2000), adequate reflexivity
relies on critical subjectivity and self-awareness. In an attempt to achieve this level of
reflexivity, I kept a journal related to my experiences to further become aware of my
biases and assumptions (Krefting, 1991). Reflexive journals are ―introspective journals
that display the investigator‘s mind processes, philosophical position, and the bases of
decisions about the inquiry‖ (Lincoln & Guba, 1985, p. 109). The journal assisted in the
self-reflection of my personal perspective throughout the research process. I also
continued to meet with my advisor, and doctoral study group to further this process. In
the conclusion, I further discuss my reflexive process throughout the research project.
Analyzing the data. By the nature of qualitative research, what is important in
the research study will unfold as analysis occurs, along with modification of the initial
research questions. Categories and themes for interpretation were not established prior to
the data collection, but rather emerged from the various forms of data collection
(Janesick, 1998). The analysis of the data began as the research was collected and
continued as the research process continued in a fluid, back and forth manner. Once I
began interviewing mothers of children with gastrostomy tubes, the information gained

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further guided my questions, aspects of my methodology, and eventually analysis of my
data.
Narrative and thematic analysis were the primary modes used to analyze the data.
Through multiple interviews, a cohesive narrative was formed that provided ―thick
description‖ of the desired events to allow for interpretation using narrative analysis
(Geertz, 1973). The data in the form of each family‘s story was interpreted individually
to uncover the meaning while in search of emerging themes across the different family‘s
data.
When sorting through the data, it was important to identify when particularly
relevant narratives had taken place to be designated for further analysis. Often a
narrative segment was bounded by specific words as it began and ended, (e.g., prefaced
by a date) which was useful in identifying when an important narrative segment may be
beginning (Riessman, 1993). However, at other times, clear boundaries were not
necessarily visible. As Mattingly and Lawlor (2000) discuss when describing narratives,
the story teller must locate the narrative in time and place around a particular event,
which also assists in distinguishing them. Once a particular story has been identified, it
was important to look at the structure of it. As Riessman (1993) recommends, ―to begin
to analyze the story without simply reading it literally for context or using it to answer
predetermined questions, the structure will be examined by looking at the organization,
thinking about why the informant constructed her story in this particular manner and
context for this listener‖ (p. 61). She recommends starting from the inside and moving
out, prioritizing the story teller‘s voice when analyzing stories,

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Triangulation was used for this research study as has been mentioned throughout
Chapter 3. For triangulation from different perspectives, my doctoral study group
assisted by providing feedback with regards to transcribed interviews. My advisor also
continued to review relevant aspects of the data collected and provide feedback.

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Chapter 4: Collection of Individual Family Stories
I chose to write an individual story for all the participants in my research study.
The stories are meant to provide contextual information for the families along with data
analysis within each mother‘s story. While there are themes across the stories that will be
explored in later chapters, each mother‘s narrative is unique and conveys the journey that
she has been on with her child and family. Specific themes within each mother‘s story
are emphasized through analysis supported by their own words.
The Family Story for Sophia and Erek: We Proved Them Wrong
Sophia is the mother of Erek. Erek is the first child for Sophia and her husband.
He is two years old and has a primary diagnosis of hypotonia. Erek has a tracheostomy, a
g-tube, severe scoliosis, and significant motor delays. Sophia was referred to me by the
director of a therapy clinic. I found it easy to connect with her by phone to set up the
interviews. During the interviews, Sophia appeared a little uncomfortable being audio
taped. The interviews took place in Sophia‘s mother‘s home. Sophia has a Polish accent,
but spoke fluent English. However, I did often have to clarify with Sophia to ensure that
I understood her English. Both Sophia and her husband are from Poland with Sophia
having been in the United States for many years. She has a number of family members
living in the United States. All of her husband‘s family continues to reside in Poland.
I have support, but I am responsible for his care. Sophia, Erek, and her
husband have been living with her mother for a few months and will continue to do so for
at least another few months. Her husband, a contractor, is attempting to renovate their
home on the weekends and evenings. The current living situation provides Sophia with
extra support as she is living with her mother whom Erek adores. Her mother is able to

63

provide Sophia with emotional support along with providing basic care for Erek.
Sophia‘s mother was observed to suction Erek and is reportedly able to feed him orally
and by the g-tube. However, her mother does not feel competent caring for Erek in
Sophia‘s absence, so Sophia may not leave him alone with her as Sophia tells below.
Sophia: Uh, well, my mom is here, my dad is also here, and you know, I have a
lot of cousins here and friends. Everybody understand and everybody can take
care of him, but, um, I don‘t know – I – my mom would take care of him if I
needed, but I don‘t – she‘s more scared that something happens she would not
know…

Karla: What to do?

Sophia: Yeah, what to do. But they‘re really supportive of when he was born,
they were, you know, coming to hospital, giving me support and Erek support,
and everybody. And you know, they‘re really helpful, you know. I can – I can
count on them.

While Sophia indicates that she has extended family support in the United States,
she does not feel comfortable nor do her friends or family feel comfortable caring for
Erek without her being present. I would suggest that, although Erek is a very sociable
and engaging child, his care is very complicated often making her and others
uncomfortable leaving him in other people‘s care. Sophia‘s statement that ―everybody
can take of him‖ makes me question exactly what she means as her stories reflect
emotional support and social gatherings, but very limited physical care for Erek. By
Sophia‘s descriptions, I interpret that emotional and verbal support is incredibly
important for Sophia, possibly even her basic definition of support. She draws upon this
social and emotional support from family and friends to be able to continue to provide the
care necessary for Erek.

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Sophia is self reliant with all of Erek‘s care. Through Sophia‘s stories, it is clear
she believes it is her responsibility to be the primary one to take care of Erek. There is
only one nurse from one of Erek‘s extended hospitalizations that is able to occasionally
provide care for Erek without Sophia being present. There were many stories that
described her enjoyment in caring for Erek and wanting the care to be her responsibility.
Sophia also described how she has learned from Erek in the process of caring him.
Pulling these pieces together makes it more understandable why Sophia takes
full responsibility for Erek‘s care and is not burdened, at least right now, by doing it
herself. I was struck by the fact that Sophia‘s interviews didn‘t include more requests for
support and time even if she views it as her responsibility as his care is quite labor
intensive.
Hyperbaric oxygen therapy. Erek‘s weak muscles and hypotonia led Sophia to
hyperbaric oxygen therapy. Sophia casually mentioned it to me during one of the
interviews. After multiple probes, it became clear the full implications of having Erek
participate in hyperbaric oxygen therapy (the medical use of oxygen at a level higher than
atmospheric pressure). Erek‘s pulmonologist gave his approval to try it, but apparently
did not recommend it as being effective for Erek. Erek was still on the ventilator at this
time, complicating his participation in the hyperbaric therapy as no metal, including
medical equipment or monitoring devices could be allowed in the chamber where Erek
and Sophia had to lie down together for the treatment. Sophia describes their
participation in the therapy.

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Karla: The part that is -- I'm really thinking about is you having to bag him for 45
minutes.

Sophia: And you know, he's so small -- thank god he was small then.
(gasp/laugh) You know, but you have to lay-- he was laying on the side and I was,
you know -- it probably was good for me. (laughing) I don't know if it was good
for him, you know. You know, the bagging was just -- I'm like, are you breathing?
And I was -- and he was falling asleep all the -- in there, so I was like, because I
didn't know if he was sleeping or if he was, like, passing out or anything. I was
like, are you awake? Are you awake? (demonstrating with her hands what she was
doing/checking him and throughout the majority of the interview, she didn‘t use
her hands in gesturing)

Karla: Could you have him hooked up to any medical equipment?

Sophia; No.

Karla: Nothing.

Sophia: No. You cannot take ventilators in there. You cannot take anything
medical in there. You have to be like all naked. He has only the diaper.

Erek - Mamma. (he is indicating that he wants to get naked when he hears us
talking about it.)

Sophia - Naked. We are not going to get naked. Yeah. He wants to be naked
(both laughing)…Yeah, I have to be naked, he has to be naked, like, we just have
a guard around us and could have no metal, no makeup, nothing. Just completely,
like, no creams, no nothing, so.

Karla - Well, I don't know a lot about it, but I know some, and that's what I
thinking, like, oh my goodness.

Sophia: I have to bag him.

Karla: Was that anxiety producing for you?

Sophia: Yeah, because I wasn't know if it was, you know -- he was sleeping there
a lot. Maybe the oxygen was just getting him, like, drowsy or something, but he
was sleeping most of the time, and I was like, (big gasp) are you breathing?
Because I wasn't sure. But he was -- he was fine. They said he's supposed to have
more energy and I was supposed to have more energy; I didn't see that. I didn‘t
have more energy. I was the same.

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Sophia took Erek to hyperbaric oxygen therapy four times per week for two
months paying $100.00 per session in which time she didn‘t see any progress as she
describes below.
Sophia: Any difference, you know. It's a lot of money I could save for something
different for him, but I want to try it to see. You know, maybe -- maybe it will
help him, maybe, you know, maybe, you know, the guy who was in there was
like, oh, I think he's moving his hand better. I'm like, I don't know, I mean, you
know -- they told me to write like, um, like on a piece of paper, like one page, like
if you see any difference. I'm like, I don't see anything. I don't know if -- I mean,
I, I was seeing difference, but I didn't know if that was because of him, because of
the therapy, or if that was because of the -- of that. I don't know. But like the
doctors say, I saw most of the kids -- because most of the kids were going there,
they were like brain damage.

Through her stories, it is clear Sophia is very committed to trying to improve
Erek‘s abilities and is willing to try a form of alternative treatment for his diagnosis in
hopes of seeing improvement. After two months of bringing Erek to a therapy that
requires her to hand bag him for 45 minutes four times per week, Sophia acknowledges
that she did not see any improvement. However, it seems she continues to question if the
hyperbaric oxygen therapy was making a difference, emphasizing that she did see
progress, but was not sure the cause of his general progress in other areas. Sophia tried to
maintain the possibility that the hyperbaric oxygen therapy was making a difference in
other developmental areas. However, when rationalizing ending the therapy, she refers
back to when the pulmonologist discouraged her from having Erek participate. Although
Sophia envisions a range of future possibilities for Erek, she continues to look towards
his medical team for validating and shaping those possibilities.
Do I need a diagnosis for my son? Sophia struggles with where to put her faith
in the medical community. She has had to juggle the information the medical community

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has given her over the two and a half short years of Erek‘s life. At times, the information
has been beneficial and hopeful, but many other times the information has seemed
negative and devastating, especially in the beginning. Erek was the product of an
uncomplicated full term pregnancy. He was born with extremely low muscle tone, being
give a diagnosis of hypotonia. Erek‘s diagnosis has never been further clarified even
with multiple and repeated testing, which has been an important part of their journey.
However, as time has gone by, it has become less central, but still present. Throughout
the interviews, Sophia often brings up that Erek‘s only diagnosis is hypotonia, which she
clarifies is not really a diagnosis. Sophia has just finished discussing that Erek‘s medical
team continues to search for a diagnosis, but it was unclear if Sophia was also on a
similar quest. Within the next story, I wanted to clarify with Sophia what finding a
diagnosis for Erek meant to her.
Karla: So, do you still feel like you are on a quest for a diagnosis, or not?

Sophia: You know what, it'd be good to know for the -- maybe for the next kid
that I would like to have, if there is that percentage or how many percentage that
it's going to be, you know, like they have something. I don't know what kind of
sickness they'd have, but there is some that you have, you know, the next kid can
have 50 percent, 25 percent they're going to have the same. But I think that -- I
don't think there's any more tests that they can run. I don‘t know. They did a lot of
tests, you know, and hypotonia was the only thing that came out.

Karla: Well, it has to feel good that even though they haven't come up with
another diagnosis, he continues to make progress.

Sophia: Correct. Correct. So, there is, you know, I'll take hypotonia, you know.
(laughing)

Karla: Did you say, I‘ll take hypotonia, you know. (both laughing)

Sophia: If that's, that‘s what it is. Because I know kids with hypotonia, they --
usually they're pretty good. He has probably extreme hypotonia, because most of
the kids they don't have trach or G-tube, they just -- they have problem with

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swallowing and-and-and eating, but the trachs are really seldom with the
hypotonia. They don't have, ‗No, Erek‘ (Erek is going after the cat) -- But, um,
there's some kids that I researched that with the physical therapy -- like I said,
they're not going to be probably athletes or anything, but they all function fine.
So, I'll take that. Better than any other that they say, you know, he's going to die
in a couple years, or it's going to be worse. So, we take hypotonia for now and see
if maybe they will find something and they will name after him. (both laughing)

Karla: They will find something and name after him.

Sophia: Or you know, I don't know. And it's like a catch 21. It's like you want to
know, but you don't want to -- you know, I want to know maybe there is
something that we can do for him, like a medication and he would get better or
there is something. But then I'm like, he's making so much progress, so why even
bother with more tests and, you know, more pain and more stuff.

It becomes clear that Sophia has mixed feelings about further pursuit of a
diagnosis for Erek. I would suggest that a diagnosis has the potential to take away her
hope for his continued progress and as she says even his life. In the absence of a
diagnosis, Sophia can remain hopeful. Sophia‘s story also further clarifies the impact
that Erek and his diagnosis have on her own future making of having more children.
Erek will die. At birth, Erek was not able to physically move his body or even
cry due to his extremely weak muscles. It was recommended that Sophia leave him at the
hospital and that he would die within one year. From the moment he was born until he
left his initial hospitalization, Erek‘s doctors provided Sophia with little possibility of
mothering him and if so, for a very limited amount of time due his predicted shortened
life span. Sophia was not able to envision another future for Erek until she was able to
bring him home. Sophia‘s story of needing to bring Erek home is below.
Sophia: Yes, after they run all the tests, and they were saying that his brain is not
growing, he‘ll have a brain of a two week old for rest of his life, and um, they
were just really…. negative, you know, about him that he would not understand
anything, you know, and he will never speak, never eat, never breathe on his own.
Well, then we proved them wrong. (laughing)

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Karla: Yeah.

Sophia: We proved them wrong, we proved them wrong…. Yeah, they wanted me
to let him just stay in the hospital. They didn‘t want me to take him home.

Karla: They didn‘t want you to take him home.

Sophia: No, no. I say, you know, I‘m just going to take him home. Whatever
happens it happens, but he will be home. So, I took him home and he‘s been fine.

Karla: Now, was that decision a hard decision to come to for you?‖

Sophia – To take him home?

Karla: Mm-hmm.

Sophia: Oh, no. (with emphasis)

Karla: No.

Sophia: I, I was going to take him home any way.

Karla: Any way.

Sophia: Yes, if there – if there was, a, you know, take him home and even if he
would die the very next day, I was going to take him home.

Karla: Yeah.

Sophia: I was not going to leave my baby in the hospital.

Through her stories, Sophia describes her initial drive to take Erek home from the
hospital. It was essential that Sophia be able to assume the role of mother in whatever
manner was possible. Initially when being provided the information that Erek would die,
Sophia appeared to accept it, but still wanted to bring him home.
Hope emerges. The facility where Erek was initially discharged to from the
hospital taught Sophia how to do the daily care required of a child who required a trach,
ventilator, g-tube and still didn‘t move his body. They gave her the skills to take care of

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a medically fragile child allowing her to move into the role of motherhood along with
beginning her journey as a medical expert for Erek. The staff at the facility gave her
permission to envision a future for her son and that she would be able to take him home
one day. In the following story, Sophia tells of how when bringing Erek home from the
long term care facility, she promised that she would wean him off his ventilator one day.
Sophia: Oh, yes, of course, of course. And you know, and I said when they, they
um, they let me take him home. And I was saying, you know what…and I make
promise to him and say ‗I will take you off the ventilator, no whether – when or
how, but I will – I will take you out. (slaps her hands together in emphasis)

Karla: You told Erek that?

Sophia: Yes, yes, I did. I said even if you twenty years old you‘ll be off the, you
know – I don‘t know when he would get off the ventilator, you know.

Karla: You want to get him off.

Sophia: And I actually did by myself but I was trying to get him off, like one
minute, two minutes, you know. You know. Every day one more minute, one
more minute. And, and then he got off. So that was really, really, really good.

After bringing Erek home, Sophia seemed to revel in being able to care for her
son in her own home. The institutionalized care Erek was receiving had prevented
Sophia from participating in daily occupations that supported her being a mother. Once
Erek was home, she began to participate in the daily tasks of caring for a young child,
including the familiar and unfamiliar aspects of mothering Erek. Sophia needed to bring
Erek home to support him in the only ways she knew how for him to make progress.
Sophia needed to be able to bring Erek home to be able to mother him.
Erek will get better. Sophia began her journey of proving Erek‘s first medical
team wrong as soon as she was given the hope that it was possible. Her discourse only
includes stories with positive outcomes or twists. An experience that may appear to be

71

neutral or even negative is laced with optimism or given an alternative ending. Erek‘s
early stories are told in an abbreviated manner or as a bridge to demonstrate the progress
he has made. ―We proved them wrong,‖ a statement that Sophia proudly uses throughout
her stories. As Sophia continues to prove the medical community wrong, she talks very
casually of significant medical events in Erek‘s life. Sophia downplays the challenges
that she and Erek experience and its impact on their daily life and his potential progress.
As told in the next brief story, Sophia goes as far to even question whether it may be
more challenging or simply the same to have ―healthy kid‖ versus a ―sick‖ kid.
Sophia: Having him sick, oh yeah. Oh yeah, it changed. It changed. You know, I
never -- I never know how to have a healthy kid, so I don't know how it would be
having a healthy kid. It would be even maybe more challenging, you know? You
know, I don't know. I don't know how to wake up every, you know, two hours --
actually do, even not breastfeeding, but, you know, but even changing the
position. So, it's almost the same, you know.

Sophia quickly notes but does not dwell on significant upcoming medical
interventions for Erek. For example, Sophia casually told me Erek was getting his trach
out in April. However, later Sophia explained that Erek was scheduled for a sleep study
to begin the process of potentially getting his trach out versus the trach actually coming
out in April. She described the process of getting Erek‘s trach out by saying, ―it‘s really
easy‖. Although, Sophia downplays the process of Erek‘s trach coming out, I would
suggest it would be another important dream realized for Sophia in Erek‘s journey to
recovery. Sophia may not even be able to consider the possibility of it not happening at
this point. I did further probe her stories about the trach coming out. At which point, she
does discuss the irony of the simplicity of the procedure as she has been waiting for this
since the trach was inserted. Sophia also ends the story emphasizing that she will be able

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to immediately take Erek home from the hospital, which I would suggest is very
significant. The hospital and procedures have kept Erek away from Sophia and her
mothering occupations. The importance of having Erek home and receiving her care is
essential.
Sophia: You know what, it's -- it-it is huge, because I've been waiting for this for-
for such a long time, but this is going to be so quick, you know? Because they be
like take it out and he's going with me. You go home‖.

Sophia appears to almost accidentally reveal that Erek may require metal rods in
the future to treat his severe scoliosis, which would be an intensive medical process for
both she and Erek.
Sophia, ―The rods, yeah, yeah, yeah. Because he has a really bad one (scoliosis).
And he just – when was probably four or five months when they noticed that he
has a really bad scoliosis and just progress so bad that they have to get the brace,
and – and we see when they going to get operation. It‘s still – it stays the same,
doesn‘t go worse, but you know, it doesn‘t get better either, so the doctors just
want to see how long they can keep him on the same – same – um, um, uh,
percentage of the scoliosis and if it goes worse really bad they will have to give
operation then. So there‘s another one waiting for us (lightly).

Later Sophia goes on to further elaborate on the surgery and reasoning for
proceeding with it. She does not deny that it is necessary, but reminds me that she thinks
that he is already breathing fine, so it will just make Erek‘s breathing even better.
It is essential for Sophia that Erek recover and live a ―normal life‖ as she
expresses through her stories. I would suggest by Sophia talking about Erek‘s medical
procedures, alternate possibilities to positive or expected outcomes, or a possible
disruption in his development would go against her continual discourse of progress. Erek
has consistently made progress at a rate surprising even Sophia at times, which has
perpetuated Sophia‘s vision of recovery for Erek not only for eating, but all aspects of his

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life. I could feel how strongly Sophia is invested in believing Erek will get better and at
this point in their journey she is not willing to let anything stand in the way of that
happening.
The ventilator is taken away. A strong theme for Sophia has been getting Erek
off the ventilator. As was told in an earlier story, Sophia promised Erek that she would
get him off the ventilator and at least partially attributes it to her slow weaning of him,
minute by minute. The story of Erek weaning off the ventilator and actually being able to
return the ventilator to the company possibly conveys Sophia‘s first true victory in
moving him toward recovery. I would argue this story begins Sophia‘s process of de-
medicalizing their home and Erek.
Sophia: Yeah, first he was off the ventilator through the day and during night he
wasn‘t on the ventilator until they did the sleep study to see if he was OK without
it. He did great, so we took him off, off the ventilator through the night and he
was doing fine and then – actually they came about three or four months ago and
they took it out, so we don‘t have a ventilator anymore. They kept it at home in
case if he needs it, you know. I put it in the closet and he was just staying there,
but they took it, so it‘s out. Completely (with emphasis).

Karla: So you were able to move it from it his bedroom to the closet and now it‘s
out of the house.

Sophia: Closet – in closet, yeah, correct. The company came and they took it out,
so that‘s good.

Karla: Do you remember that day that they took the ventilator?

Sophia: (starts talking in a rushed happy excited tone) Yeah. I was really happy,
just take everything, whatever is connected with the ventilator and just end – end
– and actually the – the company was really happy because I was the first child
during their – their years that got off the ventilator.

Karla: Really?

Sophia: Correct. She told me he was the first child. Either the child stays on the
ventilator most of their life, or eventually they – they die. But they always on the

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ventilator, so he‘s the first of – he‘s off the ventilator in the – in the company.
And she couldn‘t – probably the first child who‘s gonna get the trach out. So, he‘s
going to be the first. (quick laughter)

Karla: Wow.

Sophia: So, we‘re really happy about that.

Karla: Tell me about that feeling when they told you that was the first.

Sophia: Ohhhhh, my gosh. I have to send a picture; I send a pictures to them, the
put it on the wall. He‘s the, you know – the, the poster kid for them, you know.
She say – she say it can happen, you know. But parents are usually like really not
optimistic that, you know, if he‘s on the ventilator they will have to stay on the
ventilator forever. But, that‘s not all the case.

Karla: Right.

Sophia: Some cases they‘re like him that, you know, he can get off the ventilator.

Karla: It‘s good to have the positive cases too.

Erek‘s continued success and improvement has now become now not only a
source of hope and optimism for Sophia but to support staff and other families through a
medical supply company. He was the first child to return the ventilator and still be alive.
In a partial completion of the journey that Sophia and Erek have begun, Sophia
would like to take Erek back to the hospital where he was born not necessarily to show
them they were wrong, but more importantly show them how important it is to not take
away a mother‘s hope. Sophia‘s stories suggest that hope is the instrumental drive for her
continuing to mother Erek and pursue progress. By going back to the original place that
seemed to be where her hope was initially taken, Sophia wants to potentially prevent
another mother‘s hope of being robbed as she tells below.
Sophia: Now we are actually planning to visit them. (the hospital where Erek was
born).

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Karla: You should.

Sophia: I‘m waiting until they take the trach out and I want to, um, go and visit
them. You know, for…not to just show them that they were wrong, I guess. And,
and to not tell other parents, I guess, that, you know, that there is no hope, you
know.

Karla: Yeah, tell me more about that.

Sophia: You know, they were – they were just not really, you know – some
doctors are great and some doctors are just, not that good. I had experienced a lot
of doctors lately and, you know, some of them are just, I guess, I don‘t know, if
they just don‘t care, or they just – but there were just not giving me hope
whatsoever with him, and I just don‘t know how you can tell a parents to leave
your child at hospital and let him just die, you know. You know, and I asked
them. I‘m like, asked one of the doctors if he has kids and if he would do that to
the, to his kids and he say no, and like you expect me to just leave him there and
just let him die on me? You know, get him off the ventilator just let him, you
know – I – I – I cannot – I, I don‘t know. Maybe I‘m different but I would never
let, leave him. No, no way. You know. So, we took him home and we say – and I
pray a lot and – and you know. But I knew that he was not – as soon as I took him
to a different hospital, you know, they were more optimistic and they say, you
know, his head is growing so his brain is growing, everything is fine. He‘ll be you
know, he‘ll be a little bit slower in everything, in walking, in talking, and – but
they say he seems fine. He seems not – and you know, there is difference, doctors
and….

Hope is a strong theme in Sophia‘s story. Hope is a necessary element that has
allowed her to move forward. It has shaped her future stories of Erek with almost
unlimited possibilities. While the majority of Sophia‘s stories were optimistic and
hopeful, she recalls the time surrounding Erek‘s birth as very challenging. Due to her
early stories of needing to take him home even if he died after one day to her changed
view of actually taking him home and promising to help him get off the vent someday,
speaks to how deeply impacted Sophia was by the others caring for Erek and their
abilities to provide her with opportunities for hope, agency, and mothering.

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I would suggest Sophia‘s role in Erek‘s journey is creating possible futures and
believing in those possibilities for Erek. Sophia verbalizes that she is sure everything is
going to be ok. Even more importantly, she has learned from her experience of having
Erek. Sophia discusses how what she has learned from Erek has impacted her as an
individual and even prepared her to potentially mother a ―sick baby‖ if necessary in the
future. Sophia‘s story suggests through the skills she has learned, she will make up for
the brief period in time where she didn‘t have hope in Erek‘s life and if presented with a
similar situation in the future, she will now know how to mother.
Sophia: Oh, there was almost every day when he was in the hospital, you know,
they're always saying oh no, this is wrong with him, this is wrong with him, this is
wrong with him, you know. And-and of course you believe them, because they're
doctors, they know better than me. But, you know, but I would say well, if there is
that worse, you know, I don't think it could be any worse -- more worse, but, um,
but I guess we proved them wrong. I guess we proved them wrong.

Karla: So, let me make sure I understand. So, you were saying, you know, they
were telling you things were so bad, so how could it be any worse?

Sophia: Any worse, correct, you know?

Karla: But you believed them in the beginning?

Sophia: Oh yes. Of course you believed them, because like I said, they are
doctors and they, you know, and I think they know more than you do, you know,
because I never had anybody that sick, you know, take care of somebody that
sick. But after awhile, I just say, you know what; I don't think they're that right. I
think they're a little bit wrong, you know, because he was making a lot of
progress, so they had to be wrong.

Karla: Tell me about when that change happened, when you thought, you know –

Sophia: The change happened when I left the hospital. Because there was
different people giving you different opinions and-and giving you more hope, you
know? And that's when my perspective changed. I said, you know what, they
were wrong. They were wrong. And they were doctors and they were doctors, you
know, so there are just I guess different doctors, you know, giving different
opinions. But that's why I think you always have to get second opinion on

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everything. You know, because -- right now I know that, but, you know, I didn't
know that before. If I -- if I have another child sick like him, I would know what
to do now so much better than, you know, to not listen to them and get second,
third opinion of the different doctors and, you know, just completely different,
you know. You know, you don't have to listen to them 100 percent. You can have
your own opinion and you can voice your own voice and, you know, you have to
stand up for your kid. But now I know that, you know; then I didn't know that.

Sophia continues to turn to Erek‘s medical team for validation of her hopes and
possibilities for Erek. While Sophia‘s stories are full of hope, her expectations for Erek
are still strongly vulnerable to medical opinion. The dance that she must play between
remaining hopeful and negotiating Erek‘s medical care and medical team would appear to
be exhausting. Sophia‘s ability to have faith and agency in Erek‘s progress is in some
ways understandable fragile, but still incredibly strong.
The Family Story for Pam and Isaiah: We Work Hard at Normal
Pam is the mother of four children. She and her family live in the greater Los
Angeles area. The family is African American. She was referred to my study by the
director of a therapy clinic. We met both times in Pam‘s home with all four of her
children present along with her husband being present for portions of both interviews.
Her children are all under the age of 11, with the youngest child being Isaiah who was
two. Pam expressed significant interest in participating in the research, but was
incredibly difficult to connect with in order to set up appointments. Through the
interview process, it became clear to me the number of things Pam was juggling as well
as how important it was for her to participate in the research. As she was walking me out
to the car at the close of our final interview, Pam mentioned that she did not know any
other moms who were in a similar situation as her, referring to mothering Isaiah.

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However, Pam described a feeling of community simply knowing there are other mothers
out there like her and knowing I am talking to them makes her feel good.
My relationship with god. Pam‘s youngest child, Isaiah, who is two years and
ten months old has severe allergies and is primarily fed by a gastrostomy tube. This
family‘s journey to having the g-tube placed in Isaiah is different than many of the others.
Isaiah was born a thriving typical infant and was initially breast fed without difficulty.
Pam begins her story by describing Isaiah‘s c-section as the ―easiest of four‖ and having
a ―normal birth‖ with Isaiah. However, as the story continues, she discloses that she had
diabetes, Isaiah was smaller than her other children and was born covered with eczema.
Throughout the remainder of the interviews as her comfort level increased, she chose to
slowly reveal more information regarding her pregnancy and Isaiah‘s early beginnings.
When Pam begins to share more information regarding her pregnancy, it is correlated
with when she first verbally introduces her strong relationship to God. The concurrence
of these two themes emerging together supports how Pam later intertwines how important
religion has been in shaping her life through difficult times and decisions. In the
following segment, Pam conveys how her relationship with God has been a strong
support from the very beginning.
Pam: Ahh, I just, well, I mean, 100% for my husband and I, it‘s our relationship
with God is just everything [Karla: um-mm] and that‘s enabled us to do what
would normally feel like someone wouldn‘t be able to do. It‘s, it‘s been quite a
journey and um, starting even with the pregnancy, I mean, I was, I was told by
doctor to abort it, and that he was, she was 100% sure he (Isaiah) was Down
syndrome. Based on my blood test and I was 40 when I was pregnant with him
and she said um, she was insisting that I do an amneo, and I was insisting that I
don‘t. I had one with my son and I swore if I ever have more kids I would never
do that again. It‘s just a, it‘s not an OK procedure, just you, the whole time you
feel like this is so wrong. And, and I knew I would keep the child anyway,
whatever it is. So my doctor was just frustrated with me the whole pregnancy,

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like, yeah, oh my Gosh, you have three kids, you can‘t bring a Down ‘s syndrome
baby in. And, you know, he‘s born, no Down syndrome. And um, so it was kind
of a stressful pregnancy and, and I got the diabetes during the pregnancy…

Pam situates her news of being told to abort her son by the physician within the
context of her religious beliefs. The story suggests that Pam‘s belief in God has been the
source of support and inspiration that Pam needed to be able to have Isaiah. She
describes her faith in God as providing the strength to deal with Isaiah‘s unexpected
illnesses and hers as well, which we will learn about later. Toward the end of the second
interview, Pam actually turns the information slightly around indicating that she may
have aborted her baby if she had not had God in her life. Albeit a rephrasing of the
situation, I would interpret that it provides greater insight into Pam‘s internal struggle
with being told her baby had Down syndrome. I would suggest that the first description
of the scenario presents Pam as being confident in her choices. However, in the second
depiction, Pam expressed decreased confidence and I could feel her fragility and desire to
express how she needed faith to not abort her baby.
Pam: I may have aborted my baby. That, that‘s how bad a situation was at the
time. So, I'm just so thankful and thankful, um, for faith.

John 3:16. Religion is the foundation for Pam and her family. It appears to
shape Pam‘s daily life and interpretation of family events. The voice message on Pam‘s
cell phone was her three older children reciting a bible verse along with other religious
artifacts in her home. Pam mentions church as a familiar place that she may have to do a
syringe feeding for Isaiah. Throughout many of her stories her faith in God has
supported her decision making and dealing with the outcomes. She conveys that God is

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her strength by her words and artifacts she surrounds herself with in her home. When
explaining the role religion plays in their life, Pam relays the following story.
Pam: It is 100%,…. it enables me to, uh, to be how I am with Isaiah. Um, it
enables me to, I don‘t see him as a victim or me as a victim, that he has this, that
he‘s in this situation. Um, it saved my marriage, oh my goodness. Um, without a
doubt we would absolutely not, not be married if-if, if we had not allowed the
Lord in, into our house. Um, it‘s just everything. I have no idea what I would do
without it.

In addition to being her foundation, Pam implies religion has helped her to make
sense of Isaiah‘s needs and her role as his mother. In the previous story and in the one to
follow, Pam begins to explain the other ways that religion has positively influenced her
marriage and family. However, she begins to reveal another struggle as well. Pam‘
explains the challenges of trying to maintain a ―normal and happy‖ family under the
umbrella of her husband‘s career. Pam continues with her story.
Pam: And back when my marriage was bad, people would always say, oh, you‘re
so blessed. You‘re so lucky. But they meant because my of my husband‘s career
or because we have nice cars, or they‘d walk in our house and be like, oh gosh
you guys have everything. And I would, it would break my heart, because this is
so not who I am. I could really, we‘ll do fine in a shack if we‘re all together.
And, and I used to think, wow if that‘s what people think is a blessing, they
equate it to these kind of things, for me a blessing was a good marriage, and
children who were covered by a good marriage. And that‘s, we didn‘t have that
for so many years. You know, we, we kind of hanging on by a thread to keep the
kids normal and happy, but just dying on this end with the marriage. And, um, I
would just hate when people say you‘re blessed. And I, and, you know, people
don‘t understand. Certain things can really be a curse on family. If you, if you‘re,
if you‘re not grounded. My husband‘s so grounded now. It‘s becoming a blessing
now. But if we had our choice we wouldn‘t still be in it. But now I see why. You
know, God has an opportunity to use him to, to bring about change. And it‘s been
happening. So, I‘m, I‘m happy for that. It‘s still, it‘s still not an atmosphere that‘s
conducive to marriage and family. It‘s just, everything about it goes against it.

Pam views her husband‘s career as a curse and a blessing. It is very important to
her that her family stay grounded. According to Pam, ―we work hard at normal. We

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really do,‖ which is a strong reoccurring theme in many of her stories. I think she is not
only thinking about her family in relationship to the rest of families, but also her own
child within her family. However, her husband‘s career has put certain pressures on the
family and left Pam as the primary caregiver for all of her children. Over the years, she
has made a choice to not have a nanny to support her in the child rearing process even
though they have the means to do so. Her decision to be the primary caregiver and run
the household has evolved over time as she has adjusted to her husband‘s lifestyle, settled
into being a mother, and found God. Pam revealed that she didn‘t initially have an
interest in having children. However, she believes God had a plan that eventually has led
her down this path, which in the end has been more rewarding than her previous lifestyle.
Pam gets ill and Isaiah gets a g-tube. Around when Isaiah was seven months
old, Pam became very ill with a severe illness. One aspect of her treatment, was taking a
medication classified as a chemotherapy drug. While taking this drug, Pam didn‘t feel
comfortable continuing to nurse Isaiah, so she attempted to wean him. Isaiah was very
resistant to weaning and Pam considered putting off her treatments until she could further
support Isaiah with weaning. However, her physicians thought she was risking death and
strongly encouraged her to begin treatments immediately. Through Isaiah‘s difficult
weaning process, doctors discovered that he had multiple allergies and had developed an
ulcer in his esophagus making it painful to eat. Isaiah was found to be allergic to gluten,
dairy, soy, corn, nuts, egg, certain sea foods, and some citrus, which she described as the
main ones.
Pam: Turns out he‘s allergic to both dairy and soy, and eventually, because of the
allergic reaction it made a, um, like a, um, ulcer in his esophagus, so that when he
would swallow, it would hurt. So he just decided at 8 months to stop swallowing.

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And just determined, OK, I don‘t want to eat because it hurts. [Karla: Um-mm]
And so, um, he dropped down to, he got very dehydrated and dropped down to
like his 3 month weight. Yeah, and, it was just horrifying and I‘d gone to his
doctors, several times over the few months, saying, you know, he doesn‘t look the
same, is he OK? Oh, he‘s fine, he‘s fine. He was dehydrating, slowly. And then I
ended up in the hospital for about a month and they did an NG tube and let us
bring him home after about a month. But those kind of tubes you can‘t do for real
long. They‘re just a pain. He kept pulling it out. We‘d be at the emergency room
multiple times, you know, getting it put back in and everything. It was just a
mess. So his doctor recommended um, a g-tube.

Pam reinforced in many of her stories surrounding those early experiences that
she didn‘t have a choice as to whether or not to stop nursing with her doctors phrasing it
as a life or death scenario for her. It may be interpreted that her emphasis of such
information may indicate that she feels some level of responsibility in Isaiah receiving his
g-tube or at least wants to make sure that I understand the severity of her illness at the
time of his forced weaning. Pam was not ready to wean him and actually did briefly put
off her treatments until her health declined. Throughout the interviews, Pam integrated a
few of her own illness stories again reinforcing her need for doing treatment.
I didn’t hire you to be me just to help me. Pam felt very strongly about not
having a nanny routinely caring for her children. Through her stories, Pam suggested the
nanny would replace certain portions of her mothering role and occupations. When
telling this story as an example of why she chooses to not have a nanny, it was clear the
importance and meaning of this particular story to Pam. She changed her body posture,
began to whisper with increased emphasis, and seemed to all of a sudden ignore the
goings on of the household, which was highly unusual for her during our interviews.
When we were talking, I always felt as Pam was attentive, but clearly still actively
listening to her children in the other room. When her children addressed her, she always

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promptly responded and supported them as we spoke. However, during this one
particular story, Pam seemingly became oblivious to everything else in her environment,
including her children.
Pam: Yeah. Yeah, you know, um, I never, I never wanted a nanny. But when I
had my second child, I had one. We, um, our, our marriage was in big trouble.
The Lord was nowhere in it. And he (her husband) was completely gone just
always, always. And I was really overwhelmed. And my, my second child came
while I was still breastfeeding my first one. And I felt like, okay how do, how do I
do, how does somebody do this? You know, and my girlfriend had this wonderful
woman that worked for her for years. She‘s like, you know, well how about if I
just have (her friend‘s nanny) come help you out for a bit. And the help just
became addicting, you know to a fault, because I didn‘t, I didn‘t have help over
here. And to be able to get a nap if I wanted to, or even, she would cook. To have
the cooking done, she would help with laundry. She just became my partner. And
what ended up happening because there was so much distance there, she and I
were picking out schools together I mean she was more of a husband and I
resented that. Not in her, but I resented that,

Isaiah: MOOOOOMMY!! (the yelling has finally gotten to loud to ignore as the
children have begun to have a disagreement in the distance in the other room)

Pam: I‘m here (saying sarcastically and laughing, but Isaiah continues to yell at
his sister and Pam, mostly unintelligible-all in the other room, but Pam continues
with her story) I felt like I‘m not a working mom. So, I don‘t need a nanny. But
because I don‘t have a husband present, and active, I do. And so it was never, it
never felt like that was supposed to be. And the woman (her nanny), one day she
said to me, she said, you know, I‘m the only nanny who when I‘m at the house
where I work, the mother‘s home. She said all my other friends the mothers are
either working or just don‘t want to be home. She goes how come you‘re always
home? I told her it‘s because I didn‘t hire you to be me, I just hired you to help
me. And you know, a lot of the mothers they didn‘t work, they were hanging out
in the area, they wanted to maintain their single lifestyle, like tennis, shopping,
hanging out with girlfriends. That‘s not what I wanted. I just needed help. And,
um, and so she, she, I told her and I didn‘t hire you to be me. I just hired you to
help. So, I‘m, I‘m here. I‘m an involved mom. I don‘t work. And, um, when,
when our marriage changed, our marriage changed…(her older son finally came
out to the room where we were sitting, to force addressing what was going on in
the other room)

Older son: Where‘s daddy?

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Pam: In the shower, but I really need you to let him play the game, please. Let
him play the game, XXX (older son). You can either be a helper or not, it‘s really
that simple…. So, about maybe about five years ago when our marriage really
changed and, um, I stopped having one, and so XXXX (older son) was maybe
two, and, um, it just felt like the best thing ever because I just, I finally had what I
needed in my husband. Which meant I didn‘t need anything in anyone else and,
um, in that respect. And, and I still feel that way. I really, I don‘t go to a job. So,
this is, this is my job. And I know I‘m capable of doing it.

Pam was so intent on her story being heard that she actually changed her
mothering style while talking. When addressing her older son, she was firm and short,
but immediately went back to a soft expressive voice when he left the room. During the
course of our interviews, the children interrupted us many times through entering the
room or by yelling. However, this was the only time that she became stern and short
versus soft and supportive.
Pam‘s story is remarkable in part because of the content and also because of the
manner in which it was delivered. I interpreted that the journey to discovering she no
longer desired or needed a nanny was transformative for Pam. She was able to find in
herself the ability and confidence to be able to manage her children independently.
Possibly even more important, was her reflection that her nanny was replacing her
husband. In essence, by no longer using a nanny, she was also able to save her marriage
and her family.
My mother won’t see Isaiah. Pam‘s mother has attempted to give her frequent
advice and provide commentary on Isaiah‘s g-tube and eating challenges. However,
Pam‘s mother will not see Isaiah as long as he has the g-tube and has not come to see him
since it was inserted.

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Pam:….She‘s (her mother) just, she‘s got this screw loose in that department to
where she feels like she‘s going to come here and see suffering and she can‘t take
it. And I know that about my mom. She, she, she just can‘t take suffering…

Pam and her mother have come into direct conflict regarding their ideas of the
best way to treat Isaiah‘s feeding challenges. Pam‘s mother believes in western medicine
and certain physicians at a specific university are best equipped to handle Isaiah‘s
challenges, where Pam believes in a more balanced approach of the medical system,
natural intervention, and God. While she believes there is a time and place for medical
intervention, Pam also believes that God will lead her to the current intervention for
Isaiah, including more alternative forms of intervention. As Pam continues with her
story, she describes how she misses her mother and wishes her mother was a better
support system for her and Isaiah.
Pam: Then she just got upset at me. And I know what it was, is she feels like she‘s
dying to see me, and I know she loves me. I know she loves my grandkids. She‘s
just crazy about us. Her fears won‘t allow her to come see him. And because you
don‘t, you, you, it‘s hard to be mad at yourself, because that doesn‘t feel good, so
you have to be mad at someone else. So, it‘s-it‘s my fault that she‘s missing me
and the grandkids because I'm not doing everything I should be doing as a mother
to get that tube out. And when I realized that that‘s where she was, she pretty
much said it, you know, ―what kind of mother are you that you‘re not taking him
to other doctors‖. I was like, wow!, oh my goodness. This translates into love on
some level. Wow. I just felt like not only do I not even have my mom to lean on,
because there are days it‘s hard. I‘m not even going to lie. There are days where I
just want it done. There are days where I want him to be completely done with
that thing (the g-tube). That‘s days like if I bump it or I‘m zipping his jammies
and it gets stuck on the tube and he‘s like that is far worse than if he fell and
bumped his head. Just the thought that, of gosh, that thing, that must have hurt.
You know, that kind of thing. I would love to be able to call my mom and just
say, yeah, you know it was kind of a tough day with Isaiah. I can‘t. I can‘t.

Christian homeopaths. Pam‘s journey for appropriate medical care for herself
and her family has led her to alternative medicine. Although the intervention is outside
of typical western medicine it is very important to her that the interventionists are

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Christian and medical doctors. She has found a group of doctors in another city where
she travels about one time per month for treatment for herself and Isaiah. Pam feels very
strongly that the intervention has helped remove some of the allergies from Isaiah‘s body
along with clearing up his eczema. Pam tells a story from her experience at the
alternative medicine facility.
Pam: It‘s really interesting. They did this thing where they give you a vial, like
let‘s say the vial is, is wheat. And you hold it in your hand. You put it in his hand.
And you put this hand out and the doctor tries to press your hand down. When
you don‘t have the vial in it, if you‘re not like, let‘s say I‘m allergic to wheat. I
don‘t have anything in this hand. If he tries to press my hand down I can resist
and keep it up. If he puts something I‘m allergic to in there, and then press, I can‘t
resist, my hand goes down. It‘s the wildest thing. I don‘t know what the technique
is called. I‘ve had it done at a couple of different places over the years. And so
with Isaiah, he‘s too young to do it that way. He sits in my lap and by him and I
having skin contact and him holding the vial it affects whether or not I can put my
hand up and down. It is the wildest thing. These doctors are Christian so, I know
it‘s not some like New Age craziness. But it‘s the wildest thing. And you don‘t
really know what‘s in the vial unless they tell you.

Pam has adapted her framework to be able to blend modern and alternative
medicine in a balanced manner while continuing to use religion as a base. Her alternative
and western medical approaches in her mind complement each other. Pam also states
that the physicians understand the need for Isaiah‘s g-tube. However, only while they
continue to work on providing the body with what it needs to heal itself, in Isaiah‘s case,
remove the allergies.
Where is my ice cream cone? A strong theme in Pam‘s stories was the social
implications for Isaiah because of his severe allergies. Pam talked about social eating
experiences such as family outings to the movies, ice cream store, and restaurants. Isaiah
doesn‘t yet understand why he can‘t have the same food as his siblings. In the following

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story, Pam shares the difficulty of Isaiah‘s food allergies within the context of their daily
life.
Pam: Um, but for the most part he‘s been, um, really wanting, like whenever he
sees his siblings eat, he wants, he wants at least try. Um, and they were saying it‘s
a little challenging because of all his allergies. So, if I can‘t find something
similar that is like wheat-free, egg-free, dairy-free or all that, then we kind of have
to do without it. You know, if we go to the movies I‘ve kind of trained my kids
that if he‘s with us we won‘t get popcorn ‗because he‘s allergic. You know, if I
just take the older three without him we‘ll have popcorn. You know. Or if we‘re
in the car and everyone wants to pull over and get ice cream, it‘s like well, if it‘s
just us cool. But whenever I have Isaiah with me it‘s just hard. He doesn‘t
understand why he can‘t have it. So, um, so basically it‘s that right now. It‘s
trying to find snacks that they will like and he will like so that when he‘s eating,
or when they‘re eating it‘s a safe thing to give him. So, that‘s my challenge right
now, just trying to give him some things that they‘ll all eat. And, um, waffles
seem to be it right now.

The importance of the waffle can be heard repeatedly in many of Pam‘s stories.
The waffle is the only food that she can provide Isaiah at home that all of her children
will eat. Pam describes how she is now even taking the waffle out to restaurants with
them, so that Isaiah can participate in the eating experience without feeling socially and
physically isolated. I would interpret that Isaiah‘s eating challenges and allergies have
become a social barrier and the waffle, as simple as it may seem, allows Pam to bridge
that social gap.
Pam: Um, I mean we love to eat. I don‘t think I‘m any great cook or anything.
They like my cooking so that works. Um, but I don‘t do a lot of variety. There are
about six things I rotate through our house. You know. I try to change it up every
now and then. But, um, but my kids, my kids love food. My husband loves food
and we love breakfast the most. So, we love like waffles, and pancakes, and
French toast. That's all wheat, you know. I have found something with rice flour
and I‘ll make it for him. And the consistency is not great. So, my other kids don‘t
like it too much. But in finding these waffles he just, that changed our life.
Because, we‘ll, we‘ll toast waffles, wrap them in tinfoil and then we‘ll take the
kids to IHOP, and now they can have whatever they want if I‘m not cooking here.
They can have a big, huge breakfast there. They can have a, a regular waffle or

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French toast. They can have whatever they want. And we just put his waffles on a
plate and use syrup and he thinks he‘s having what they‘re having.

Pam told stories about how challenging it had been from going to be a mother of
three to becoming a mother of four children. She talks about how she has not been able
to figure out how to gracefully manage four children without being stressed and sleep
deprived. However, while looking through all her stories, not once did she indicate that
any of the difficulty managing four was due to Isaiah having a g-tube, allergies, or the
extra care he required. At one point she even described when discussing her time
constraints, how the g-tube has not changed her mothering style, which would be
consistent with other stories that Pam told in relation to the g-tube.
Pam: Now, it‘s, um,……. I was, I, I‘m, I never have been like a drive-through
mom. So, Isaiah‘s situation doesn‘t change that. It‘s not like, oh, if he wasn't on
the G-tube then I could be running errands with him and just go through the drive
through and we could keep on rolling. That‘s never been me anyway. So, it‘s not,
it doesn‘t constrict me in that sense, however, I do plan my day around, okay, I
know he has to eat around this time, that means I can run this errand….

Isaiah having a g-tube clearly impacts him, Pam, and his family. However, it has
become part of the family‘s normal routine, often being omitted from the discussion as a
significant part of their day. This silent presence of the g-tube also further supports
Pam‘s desire for normalcy, treating Isaiah as a normal child and having him be a part of
their family. Pam describes her desires for future eating for Isaiah. She once again
contextualizes normal eating habits by him eating a typical meal with his family.
Pam: I know that, you know, God has a huge plan for him and that everything is
good and it‘s just a matter of, you know, I just have to not throw myself pity
parties, you know? Like awww . . . It‘s, it‘s just not about that. He‘s a joyful kid,
and, you know, he‘s, he‘s loves his family, his family loves him and it‘s just, it‘s,
it‘s not a bad thing, you know, it‘s just, it‘s something I would like to be done
with, you know, for sure, for sure, for sure. (laughing while emphasizing for sure)
I just want to see him eat, eating and enjoying food. You know, I would just love

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to see him just sitting down with us and eating the same things we‘re eating, you
know, eating from his plate and, like that, and it‘s not just waffles. You know?
Just having a normal eating habit.

Pam indicates she really wants Isaiah to be treated as normal and her future ideas
about him include typical eating. Although, Isaiah, his allergies, and g-tube have become
a routine part of everyday life for this family, there is no question Pam will be happy the
day Isaiah no longer needs his g-tube.
The Family Story for Nellie and Mark: A Cultural Negotiation
Nellie is the mother of Mark. He is the first child for Nellie and her husband. He
is four years old and has a primary diagnosis of a unique genetic syndrome and Pierre
Robin sequence. Mark has a tracheostomy, a g-tube, high blood pressure, severe acid
reflux, and associated respiratory challenges. Nellie was referred to me through one of
the therapists who works with Mark. Nellie is from Taiwan and her husband is from
China. Nellie, Mark, and her husband currently live in an apartment complex. Nellie
works full time and her husband also works outside the home.
Nellie felt very strongly about participating in this research project. After one of
the interviews, Nellie commented on how anything that she could do to help other
mothers was very important to her. Nellie did a master‘s thesis in Taiwan and discussed
the importance of research in her life.
At the beginning of the first interview, Nellie was quite reserved, but warmed as
the interview process continued. Mark was ill during the entire process of her
participation. Nellie had to cancel multiple appointments due to her and Mark being ill.
The third interview was canceled and indefinitely postponed as Mark was finally
diagnosed with a serious contagious respiratory infection. Nellie was reassured that he

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was now on appropriate medications to address the infection, but was concerned that I
had already been exposed and didn‘t want to further expose me if I hadn‘t already come
down with it.
My cultural knowledge. A strong influence in Nellie‘s stories and decision
making is the greater Chinese culture. Figuring out how to situate Mark and his special
needs within the traditional Chinese cultural values appears to be often difficult for
Nellie. From the very beginning, Nellie‘s stories tell of the struggles she experienced
with attempting to fit Mark into her vision of having a baby. Nellie did not know that
Mark was going to be born with health and developmental challenges. Nellie tells her
story below.
Nellie: Umm, you know how Asian people, are very typical Asian people, I would
say that, especially we are Chinese family or we were born with the
environmental, with the environments that we having a healthy baby, healthy boy,
first born baby, that has to be strong and we never have an experience um seeing
kids with a trach, or seeing kids with a g-tube at all, and in our minds, we having
a perfect baby or our baby is, was healthy but……

Karla: In your mind,

Nellie: Yeh, because the only thing that I have is, is only allergy, so I have been
taking allergy pill and I didn‘t imagine that I would, I would, I would see my baby
with so many things going on and then when, then the baby was born the doctor
told me with all those kind of things, it was like, umm, especially for my husband,
it was like a humiliation to the family [Karla: Mmm] It was like, umm, not
acceptable, you know, being part of the old culture one of the world oldest
culture, in the world, they never see this kind of baby, and there, there was, it, it‘s
just like you‘re seeing ghost, you know….Mmm, they not really, not acceptable,
but they were in a shock, [Karla: Um-mm] ‗What happened?‘ You know all kind
of question and I couldn‘t answer them and umm, I remember my mom were
could, my mom couldn‘t sleep for many weeks, and she were worrying, ‗how am
I going to take care of the baby, I am not capable of taking care of a baby, this
kind of baby‘ and ‗I‘m not going to take care of the baby,‘ those kind of thing,
and um I told my feeling to the social worker, and they give me a choice, um
either to leave the baby here and then you go home or um, you continue coming
here see your baby and treat as one of your family (slight pause)

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Karla: So, let me clarify, so the social worker gave you a choice, to leave the baby
there

Nellie: Um-mm

Karla: Like for adoption?

Nellie: Um-mm

Karla: Or bring the baby home

Nellie: Or a wait and then bring the baby home and I was, the social worker, I, I, I
didn‘t say anything, I remember she said, well, you think about it, and you have a
choice, umm, not to take this baby, mmm, we won‘t ask any questions. So, I
came back and then I talked with my husband, he didn‘t say anything, then I think
about it for many days, and finally, I, I think that we will take care of it, but I
didn‘t tell the social worker until the last day that they informed me that ok, you
can, you going, we are going to discharge your baby, ahh, it‘s either that you have
a choice to take him or you will leave it here, so I told him, I told the social
worker that we will bring him back. Yeah.

This excerpt from one of Nellie‘s interview begins to demonstrate the complexity
under which Mark entered this world. Nellie and her husband‘s traditional cultural views
make the inclusion of Mark into their world conflicted. In addition, one of Nellie‘s
primary support systems, her mother, is already letting her know that she will not be able
to assist her with ―this‖ kind of baby‘s care. Mark had multiple unexpected medical
challenges that were particularly difficult for Nellie and her family to assimilate into her
cultural worlds. The grief and sadness that Nellie experienced within the NICU
environment prompted the social worker to present her with the option of not taking her
baby home. She thoughtfully considered and independently made the decision that she
would take this baby home. While reading the previous passage, I kept returning to
Nellie‘s referencing that she had decided to bring Mark home, but didn‘t share the
information with the social worker until Mark was ready to be released from the hospital.

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Her reservation in not sharing her decision could possibly be that she continued to
contemplate her decision even though she verbalized that it had been made. Also, Mark‘s
stay in the NICU was unpredictable, involving life threatening illnesses. Nellie may have
needed to make sure that he was going to survive before she revealed that she was going
to bring him home and mother him.
I will not take care of this baby. Nellie‘s mother appeared to be experiencing
her own sense of loss and confusion over Mark being born with health challenges.
Nellie‘s mother immediately began expressing concern that she was not going to be able
to care for a baby born with these kinds of challenges. Within Nellie and her husband‘s
cultural practices, either the maternal or paternal grandmother would typically move in to
support caring for the new baby for at least one month.
Nellie: Because ah, in China‘s culture, during the first month um, of the baby
born they have, they call it, ahh, yeh, ahh, they have to stay at home, and you
need to have to have someone take care of the baby except for feeding and during
that time you need to rest and then eat and then usually um, a mother of either
side the parent, husband side or mom side, will stay home, and help you cook all
those kind of nutrition foods just for the baby or for you to pump up the milk
that‘s old traditional Chinese culture, but for her she thought, at first she thought
she would come and help me cook, but when she saw the baby and say ‗oh, I
can‘t do it, I can‘t do it‘ (again a little softer).

Nellie‘s mother did not come to take care of Nellie and Mark when they did
finally come home from the hospital. Nellie later continues the story in the interview.
Karla: So how, how did that work then when you brought Mark home? [Nellie:
Umm…] Did anyone come?

Nellie: No,(slight pause) my mom came, after I came home on, my mom came on
the 5
th
day that I came home and then after we bring back the, the kid…., umm,
my son, she came only once a month, sometime 2-3 months and then, but we, she
would, she would, I will call her (change in voice sing song) ‗How are you
doing?‘ And then she would ask, ‗are you ok,‘ ‗yeh, we are doing ok,‘ it just more
like telephone conversation, more than a visit.

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During this passage, I interpret in part from the delivery of her story that it was a
difficult time for Nellie when her mother did not come. Nellie is able to recall the
specific day that her mother came to her house years ago. In Nellie‘s traditional cultural
world, she was supposed to have the opportunity to mother her new son while being
taken care of by her own mother. However, Nellie was not given that opportunity and in
some ways had to mother her own mother. Nellie only expresses understanding and
comfort for her mother who will not come to participate in the anticipated cultural
tradition of supporting Nellie and Mark in the early new born period. It is anticipated
Nellie‘s reaction to her mother is another example of how her strong cultural beliefs
shape her behavior. Nellie calmly reassures her elder mother with respect, which would
be appropriate within the cultural context of what Nellie describes. In other stories,
Nellie references the importance of respecting the elders, including her mother.
Cultural implications of daily life. Mark has frequent hospitalizations,
according to Nellie too many to remember or keep count. Throughout the
hospitalizations, Nellie has gained a sense of authority in certain areas and during the
most recent hospitalization may be heard expressing the desire to support more novice
mothers.
Nellie: Right now we are on XXX (medication) for hypertension, XXX
(medication) for breathing treatment, XXX (medication) for breathing treatment,
and then XXX (medication). That‘s all that we have. It was cut from nine
medication down to four.

Karla: Four. It‘s moving in the right direction.

Nellie: Yeah, it take a long time. Well, you know, I understand because during
this stay at the hospital, a lot of parents say, oh the medication is it working? And
you know, I really have a feeling I have urge to, you know, don‘t worry, you have

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to take it a long time before it really works. Some kid works with the medication,
some kid works with the medication, and her, her doc-, her son was like four
month old. And so she was starting using the medication for over a week only. So
she was asking and I heard those and I was feeling, oh, don‘t worry.

Karla: When you‘re in the hospital, do you find yourself talking to a lot of other
moms?

Nellie: No.

Karla: No.

Nellie: No, because umm, moms are like, well, like pardon me, but for the white
mom, they tends to talk over the phone with their families and then talk with the
husband, what‘s going on and then they have relative coming in, and for the
Latinos, they tend to kind of like having their own big family.

Karla: OK.

Nellie: OK. And for the Asian, I don‘t know. The Asian was kind of like keeping
themselves to . . . for me, I‘m open, if somebody come to me and talk to me, I‘ll
be willing to talk.

Karla: Right.

Nellie: But, um, at the hospital, no.

Karla: No.

Nellie: In the rare case, occasionally there are one or two (Asian families).

While Nellie contemplates wanting to support a novice mother in her concerns
about medication, she does not. Nellie‘s ability to communicate with other mothers is
deeply embedded in her cultural schema. She is open to talk to other mothers and
through her story, demonstrates a desire, but the other mothers must approach her as she
is not able to step out of her understood cultural boundaries.
Nellie scheduled our interviews around the Chinese New Year celebrations to
allow her and her family to participate. Due to Mark‘s health, the family was not able to

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participate. However, Mark being ill over Chinese New Year had greater implications
than simply not being able to participate as a family as Nellie tells in the following story.
Karla: OK. So, you didn‘t really get to celebrate Chinese New Year then this
year.

Nellie: Nnnnn, Not really, but good thing is that we didn‘t go to the hospital on
the Chinese New Year day, but after that. Which is a good sign, at least we‘ll
have a good start.

Karla: So is there a tradition around that what happens on Chinese New Year
predicts the next year?

Nellie: Not really, but um, Chinese culture is that for the real New Year which is
on 26
th
, we‘re not supposed to take medication, we‘re not supposed to
hospitalized, or, or we‘re not supposed to work, because if you‘re working that
means you have to work the whole day, if you‘re taking medication, that means
you are sick the whole week, the whole year, or if you‘re hospitalized, um, it will
bring bad luck to you. You know, hospital, Chinese New Year, it‘s not a good
sign. (Quiet serious smile, almost a chuckle)

Karla: Uh-huh. So then on Chinese New Year, do you abide by any of that for
Mark as far as his medications and things like that?

Nellie: I beg your pardon?

Karla: On the Chinese New Year, then, do you still give Mark his medications, or
do you try not to do it that one day?

Nellie: No, I still give it to him because I feel like it‘s better than going to the
hospital. Yeah (small chuckle).

The assimilation of Mark into Nellie‘s cultural world continues to present
conflicts for Nellie. She understands the importance of providing Mark with necessary
medical care, but we get a glimpse as to the cultural implications of providing that care.
Nellie implies that Mark being ill around Chinese New Year has implications for his well
being for the remainder of the year. Simply providing Mark with his routine medications
on this important cultural holiday creates cultural conflict for Nellie.

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Nellie references her Chinese culture to further explain and contextualize hers and
her families‘ response to Mark‘s behaviors and participation in a family gathering
involving a meal at restaurant. Nellie tells the story of the Christmas family gathering at
a local restaurant.
Karla: So the buffet that you were at for Christmas, tell me a little bit more about
what happened.

Nellie: Oh, it was, umm, this restaurant, you know this restaurant, right, it‘s in a
mall and then when you, you go into the mall, he would getting used to go to the
stroller, go to see whatever he wants, but now we have to pull him and then put
him in the car seat, in a, in a booster seat and he was kind of like, getting upset,
Why, I am getting used to going out, you know and ah, we have a lot of family
that he knows that who is who and he start to get um, very shy when he is within
the family, he tends to rather not to participate in the table rather go out,

Karla: How is that for you?

Nellie: Ohhh, not good. (slight uncomfortable laugh/sigh) Because the family tell
him that he needs to be there and he needs to eat, but he doesn‘t want to eat

Karla: And what is the response of your other family members that are there, like
over the holiday when you were at the restaurant? (Mark‘s vocalizations become
audible again)

Nellie: He‘s, they were saying we, I‘m spoiling him. (uncomfortable laugh/sigh)
Well, which, I think that I am not spoiling him, but at least I don‘t want to create a
impression and, and my, my eldest sister said I have to train him to, to be, to
participate more at the table and at least try to accept greeting from the eldest
peo…, the eldest, um family, family member, he tend to run away, he tend to
ignore the greeting the everything from the family members, I don‘t know why,
but he tends to do that

Karla: And what does that mean, then for you?

Nellie: Mmm, What does that mean?

Karla: When he runs away or doesn‘t accept the family greeting?

Nellie: Ohh, kind of like losing face, (uncomfortable laugh/sigh) it‘s just….

Karla: Losing face

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Nellie: Uh-huh, it just like I am not teaching him good. Because um, in China‘s
culture, you respecting elders is the important thing at the first, when at the first
place, so when you see the elder people, you have to greet them, him or her,
politely, and they‘ll, just giving respect to the elder, but for him he just said, oh,
ah, somebody I know come and then he would just run away.

Family gatherings appear to be very challenging for Nellie. She knows what her
family expects, but is not able to make Mark comply with their expectations. Nellie then
seems embarrassed. I would also suggest that she begins to question her own ideas about
Mark, his behaviors, and how she is able to make sense of them. Nellie continues her
story below.
Karla: What is that experience for you then?

Nellie: I should say how did I feel (slight laugh)

Karla: Yeh

Nellie: Ahhh, like I say it‘s kind of like, losing face that my son is doing this
[Karla: mm-mm] But, I can‘t force my son, force, I can‘t force my son to do
things that he doesn‘t want to do and, and I don‘t, I have to say I don‘t necessarily
understand why he acts this way

Karla: You don‘t understand why he would act this way

Nellie: Mm-mm

Karla: Mm (Pause)

Nellie – I know that is kind of like complicated, but I really don‘t know.

Mark‘s eating and developmental challenges prevent him from participating in the
meal and associated social interactions in a manner that is meaningful to Nellie‘s family.
Nellie struggles with trying to support Mark with appropriate participation and ‗teaching‘
him, but then also reflects that she may not agree with her family‘s advice and traditional
cultural values. She acknowledges that the situation may be challenging for Mark as she

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is asking him to exhibit different behaviors in an environment where he is usually
allowed to be more active. Nellie does not feel she is spoiling Mark and reflects that she
just may be raising him a different way. However, in the end, she too, along with her
family, does exactly understand why he acts this way. The social and cultural
implications of Mark‘s behaviors have an overall reflection on Nellie‘s ability to mother
him within her Chinese culture. Nellie‘s various stories further explore how situating
Mark‘s disabilities within Nellie‘s traditional Chinese culture, as she refers to it, creates
an ongoing conflict that Nellie must negotiate within herself and her family.
Nursing and medical manager. Due to the family‘s need to work and their
financial situation, Nellie has relied on public funding to provide nursing staff to care for
Mark at home and at school when she is at work. Nellie works full time as her job
includes benefits which covers Mark‘s medical care. Nursing support is often discussed
in Nellie‘s interviews. She has not been able to rely on any other friends or family other
than her husband to assist her in caring for Mark. Due to the necessary co-dependency,
Nellie has had to learn to negotiate the nursing care system while being forced to
prioritize the qualities that she is looking for in a nurse. She has also had to become a
medical manager to coordinate the nursing care for Mark, an unfamiliar occupation.
Nellie often conveys frustration with nurses‘ unprofessional behavior and lack of
knowledge. Nellie feels she treats the nurses well or ―like family‖ and doesn‘t
understand why the nurses would not do the same with her and Mark. Nellie has many
stories where the nurses come late, leave early, or give a very short notice of changing or
eliminating their hours, which impacts Mark‘s school schedule along with her and her
husband‘s participation in work. She also feels she has very limited options with respect

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to the qualities in a nurse for Mark. Nellie seems to feel she is often forced to
compromise a particular quality in her nurses or general professionalism because of her
limited choice as she conveys in the following story. Mark‘s new nurse is an older man,
but he is able to play with Mark and enjoys being with him. However, he is not familiar
with basic caretaking tasks such as diaper changing, which Mark still requires, and is
indecisive about whether he will be able to care for Mark.
Nellie: And I came, first day I came back and I saw all the poop. He was sleeping,
with the poop, full poop, full diaper on the bed. And I said, ‗oh, my God.‘ And he
got poop on his leg, and I say, ‗what happened?‘ You know, his first day I don‘t
want to ruin. And this gentleman will keep chan-, on the first day. Oh, you know
what, ‗I‘m tired, I cannot stay up late, I live in Hollywood, I cannot, I will call my
agency and, that um, have them to find.‘ Then, ‗OK. I‘m sorry to hear that, I
really appreciate your help.‘ Then the next day he came back. ‗You know what? I
changed my mind. I think I‘m OK. I like your boy.‘ That‘s the second day. The
following week he came, I had to ask him to come in extra on Wednesday
because my nurse was, my regular nurse taking a half day for dentist, so I called
the agency and have the agency to call me whether this guy can come or not. And
then he, he was able to come. And he said, ‗oh, I like your‘ . . . and then so, and
so, and then Thursday he came again, ‗oh, you know what, I‘m too tired and, and,
and I can‘t really wake up at 6 o‘clock, I‘m old.‘ And I was listening and I said,
‗OK. Did you tell your agency?‘ ‗Yeah, oh, don‘t worry, I‘ll wait until they find
somebody and then I will quit.‘ And Friday came, he called me again at 7 o‘clock,
he leave at 6, I have my husband came home early. 7 o‘clock, he said, ‗Nellie you
know what? I think about it, I want to stay with you guys. I‘m comfortable with
you guys.‘ So the agency called me, said, ‗do you know what‘s going on?‘ I said,
‗I don‘t know.‘ If this guy is going to know his mind, I will know what‘s going
on. But it‘s just that he keeps on changing every day, I don‘t know what to do
with him. (pause)

Karla: And now he‘s still with you.

Nellie: I have no choice.

Karla: Right.

Nellie: And there are no other choice there. This is part of the reason that I‘m
looking for a new agency that I will say that has more professional nurse than
having somebody that keep on changing mind every day, or a nurse to feel that
I‘m, I‘m very exhausted.

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Nellie, herself, has been forced to move into a nursing role for Mark due to the
kinds of care that he requires on a daily basis and arguably also a nurse manager. In
many of her stories, she refers to herself in the nursing role or quietly assumes it. As she
has embodied the nursing role for Mark, she understands what goes into caring for him
on a daily basis and the exhaustion that can be associated with his care. As Nellie is so
intimately involved, even if by being a manager of Mark‘s care, Nellie had empathy for
others who also care for Mark.
Nellie comes home from work every day to relieve the nurse along with
seemingly being able to engage with and monitor Mark‘s overall wellness. Nellie is
forced to rely on nursing care for Mark. However, she finds ways to insert herself as his
mother even within the context of his day to day nursing care. Nellie uses her lunch
break to not only relieve the nurses, but also to connect with Mark and learn more about
how his day is going, a very typical mother inquiry. In many of her stories, including the
examples provided here, surrounding Mark‘s nursing care, you can hear Nellie shifting
among the identities of mother, nurse, and medical manager.
Feeding Mark. One area where Nellie has chosen to maintain a more familiar
mothering role is in her oral feeding of Mark. Nellie expresses well thought out ideas on
how Mark‘s current oral feeding needs should be addressed. She believes school is a
good place to challenge him as the teachers and staff are able to set up an environment
where he is ‗forced‘ to eat at least small amounts with his peers. She and her husband
have struggled over the years as to how to support feeding in the home environment, but
she feels strongly that she wants to encourage pleasant eating experiences in the home

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environment. Their journey has finally ended with trying to support Mark to engage in
food and drinks by leaving things out for him to self-initiate along with allowing him to
physically explore food even if he doesn‘t eat. In the following story, Nellie describes
her views of how feeding should occur in Mark‘s different environments. She also
begins to show us how she and her husband came to this distinction.
Karla: Tell me how he participates in mealtimes.

Nellie: He was able to, not really a mealtime, umm, he start practicing in the
mealtime at school, he went to um, special school here and one of the, the
requirement the teacher ask me, that I really have to do, enforce is, um, is that
have him sit at the table umm, during the first six months, he was crying, he was
so upset, when he has to sit and then sit there and then somebody trying to shovel
down the food. He doesn‘t get used, didn‘t get used to it. And then my husband
tried to give him some pureed food because we have an OT coming and then we
were recommend to give him pureed food because when he eat it, he was so umm,
rejected, umm, whenever he saw food, he tends to turn away, so my, my husband
decide to change the whole method, he just put the food there and we have a
highchair, we just put the food there and have him sit in the chair. Allow him to
do whatever he wants, it was messy (slight laugh), was messy, but umm, its
slowly get him used to the food texture and everything, but I think the only time,
that he really start to work is when he go to school and was forced by the teacher
to sit there and he have to sip something, it‘s either yogurt, milk, or anything, he
has to do it. Then from there he start, he start bit by bit, having food, ummm, with
us right now he only sit for less than five minute and then he will go, but if we put
like food on the table, he would turn around like, turn around and feed himself, so
he wants to have control rather than us control him

Karla: Um-mm, Tell me about when your husband decided he was going to
change the method

Nellie: Umm, How, umm, I don‘t know. He all of a sudden, he just, he just, gave
up. And then, well, he just say ok, just let him, do whatever he wants, so he‘s
kind of playing, touching, smushing everything, but he doesn‘t put anything in the
mouth at all, so we‘ll see and now we trying to kind of like, you want something?
That he doesn‘t want, ummm, so we kind of like did that several times and there
was one day that my husband put some puree, pureed food. It was really kind of
like watery and then he scoop one scoop and then happen eat it. He doesn‘t want
to, he didn‘t want to eat it at all. He turn around, he throw thing and then he, my
husband gots so mad, I said I think part of you was tired and he was wants to see
him improve so remember seeing him scoop one the puree and then shoveling

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into his mouth and then he was so mad, my son was so mad that he threw up.
And then he did it again on the next day for like three days straight and then he
stopped.

The school provides an environment for Mark to be encouraged to eat. Nellie is
reassured by their efforts to feed Mark, but prefers in the home environment to allow
Mark the control, taking initiative when he wants to eat. Nellie is forced, due to Mark‘s
medical needs, to do many ―medical‖ things to him on a daily basis. I would argue that
she has specifically chosen to use feeding as an opportunity to provide Mark with control
over his body. Also, by providing the food and drink for Mark, but not ―forcing‖ him to
eat, Nellie is able to assume a more typical mothering role in this aspect of Mark‘s life.
My son is still fighting; I have to fight with him. Nellie finds strength in Mark
that supports her being able to continue to care and advocate for him. Throughout his
illnesses, Nellie has used Mark‘s resilience as a place to find calm and prepare herself for
the journey to come. Throughout her interviews, Nellie frequently references a story in a
variety of contexts that is particularly meaningful for her. This is the first time that she
tells the story in its entirety and it begins within the context of things that she has learned
from Mark. This story gives her strength and may be thought of as a turning point that
shapes future interactions with the medical community and her faith in Mark.
Nellie: You know, it, it its, it‘s really make me feel like, I don‘t have to take, take
things to seriously, (coughing) and he teach me that never give up, umm, two
years ago when he was ahh, a year and a half, actually seven month the doctor,
the GI doctor recommend to change his g-tube to snap button g-tube and then we
went through an assessment, with the a, a surgery department and there was one
nurse that somehow didn‘t carefully enough perforate his stomach

Karla: Didn‘t what?

Nellie: Perforate

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Karla: Ok

Nellie: We didn‘t know about that, we just noticed that Mark was crying and then
he stopped crying and we thought, oh, ok, he was ok, ten days later the stomach
got infected and his stomach bloating um, my husband call me about noon time,
call the hospital, Mark was crying and the stomach, (to Mark with voice change)
Yeh, Elmo, (done) the stomach was bloating, so we went to, to the hospital and he
had to go through an emergency surgery and then we found that they have to cut
the stomach almost half of it, because the infection went so bad and we didn‘t
know that is was a perforation and (to Mark with voice change) Yeh, good.(done)
After the surgery, they um, after the surgery, he was put in the pediatric ICU for
about two weeks, and at that time, he was giving amphificilan (?-maybe-
amoxicillin or penicillin), antibiotic, for treating the surgery but the resident there
didn‘t know that he, he was a, his body didn‘t react to amphificilian, his, his body
resistant, was resistant to amphificilan

Karla: Amoxicillin?

Nellie: Yeh, it doesn‘t work, so instead of the wound healing it was getting
infected, so bad, that one day (Mark turns up a computer program very loud-
however it doesn‘t sound as loud on tape as I thought it would. It was very
challenging to hear mom and focus-mom speaks to Mark) Mark, keep it slowly
please. (done) That one day, one night when I, after work, I went to visit him, he
was playing and then he was, resting his leg and he was coughing, you know how
the wound was kind of like this, [Karla: Um-mm] And it was so infected, well, I
feel, I feel that how come the wound gets so watery, it is suppose to be dry and he
then he cough it out. All of a sudden the intestine POP out, and he start coughing,
but he was kind of like playing with it and he was still coughing and he doesn‘t
react anything, so I went to the nurse and I said the intestine popping. The nurse
thought that I was kidding and said no, the intestine popping go and look.

Karla: The intestines popping

Nellie: Popping out, because he was coughing, so its, popping up. So, the nurse
went to the opposite room and she said, ICU and asked the, the nurse as, asked
emergency doctor to came. They can‘t do anything. And during that time-period,
ah, my son was lying down there, kind of playing with his leg nothing happen and
I said oh my son, when I saw my son was not reacting so bad, it‘s kind of like
calming down, tell me that I have to be pa, I have to cool down, it‘s ok, he‘s ok,
he‘s ok, and then they rush him out to the surgery and everybody was so exciting
and the surgeon, like the, resident, the surgeon resident, like six people wearing
glove and then came in, (change voice as if talking as the resident surgeon) ‗oh
my god, call the big doctor, call Dr. Su, call Dr. Su, everybody was screaming and
I say he was still playing, to me I saw him, he was playing, I, I, I said, oh, it was
nothing, it just popping out, but to them it, it was like, (back to surgeon voice) ‗oh

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my god, rush him, within a half hour, you have to.‘ You know they talk all those
kind of thing and, and I feel like it just intestine popping out. And then after the
surgery, I sat down and said oh, ok, I need to cool down, once, once you have a
clear mind, you know what to do.

Karla: Um-mm, so that is an experience where you learned from him and

Nellie: Yeh, and anot, another reason behind that is that, he still fighting for his
life and, and I there was one pastor at hospital that told me that, at that time, I
didn‘t realize anything, I just, just say, I, I, I told the pastor, you know what I am
so tired, thank you for visiting me, I really tired. I‘m so tired, I need some sleep
and then the pastor told me and said you know what, be strong, your kids is
fighting for his life, we cannot give up. And after that, after that I kind of like lay
down on my back, and I think about, yeh, he‘s fighting, he because I still
remember the, the scene where his leg was up, and the the intestine was popping
up, and and, and, he didn‘t sense it, he doesn‘t seem like he is fighting, but
actually he is fighting for his life (Computer has gotten louder) He is fighting to,
to, to, to be here wit..., he is fighting to live on this earth and and and teach me in
a way that, and tell me in a way that I cannot give up. My son is still fighting. I
still have to fight with him also.

During a traumatic medical crisis, Nellie is able to remain calm as she is using
Mark‘s behavior and her interaction with him as a way to regulate both of them. She
draws on Mark‘s continued playful engagement as a way to reassure her that everything
is under control in this very serious chaotic situation. This story becomes her platform
for how Mark has had to fight for his continued existence in this world along with a
demonstration of his overall resiliency. Through this crisis and interaction with a hospital
pastor, Nellie interprets that Mark has provided her with much needed strength and
―teaching‖ her that she can‘t give up.
The Family Story for Heather and Anna: My Private and Public Worlds
Heather is the mother of Anna who is 17 months of age. She is married to Duane.
Anna was born at 26 weeks gestation with an extremely low birth weight and according
to Heather ―given a zero percent chance of survival‖. Anna was in the NICU for over
four months. Her primary difficulty at the end of her NICU stay was eating by mouth

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and she was discharged home with an NG tube. Since coming home, Anna received a g-
tube. Anna has continued to have significant difficulties with oral feedings, severe
reflux, vomiting, and tolerance of her g-tube feedings. Besides her severe feeding
problems, Heather believes and has been told by professionals that Anna is
―developmentally dead on‖. Anna is walking, using words and babbling, and socially
interacting with her world.
Heather was easy to contact by phone and email. She was very interested in
participating in order to provide knowledge to other mothers of children who were
premature and have gastro-esophageal reflux disease (GERD). Anna had her g-tube for
just over six months when the interviews started. The interviews took place at Heather‘s
home, which is located in the Valley. Heather was very comfortable participating in the
interviewing process. Heather and Duane are the primary caregivers for Anna, but do
receive nursing support that is provided through public funding.
My private and public worlds. Throughout Heather‘s stories, one of the most
prominent themes is the information she chooses to keep private and the information she
chooses to share with her family and friends. Heather and Duane have decided to keep a
number of details surrounding Anna‘s birth and current life private from family and
friends. Only Heather and Duane‘s very immediate family know that Anna has a g-tube.
They have also kept a number of other pieces of information private surrounding the
details of Heather‘s pregnancy, Anna‘s NICU experiences, and have only allowed select
photos to be seen surrounding the time of her birth and NICU stay. Heather is concerned
that other family members ―will not understand‖. She at least partially bases her

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concerns on how her family has reacted to another child that had a g-tube. Heather
describes her family‘s reactions to that child in the following story.
Heather: Yeah. And she's not -- I mean, she's not handicapped (referring to
Anna). When the time comes, she's probably going to need a feeding clinic. And
at that time, you know, maybe we'll tell them. Maybe we won't. I don't know. One
of the main reasons that I did not tell them is because, through -- through like, the
-- my sister-in-law who's married to my brother, her sister-in-law umm, is a --
became a good friend of mine because they have a baby that was failure to thrive.

Karla: Oh, wow.

Heather: A full-term baby.

Karla: OK.

Heather: With severe acid reflux from birth. From the day that baby was born,
she ate nothing. Would not eat a thing by mouth. And by the time was two years
old, they put in the G-tube. And she ate nothing [Karla: Umm.] By mouth. And,
I saw the way umm, my family reacted to that baby. And this was before Anna
was even born, but I remembered how they reacted when they saw that baby. And
when the -- when the baby wasn't there, they would just say, you know, that
baby's handicapped. She eats nothing by mouth. Umm, she has a tube in her
stomach and they feed her through a tube, how natural is that? And you know,
they just kept saying how handicapped that baby was, and umm -- umm, and I just
remembered hearing the conversations. And I don't know if it -- I didn't
participate in the conversations, but I just think, you know, it is a small world that,
you know, in my sister-in-law's family, they have a failure to thrive baby, and we
have a failure to--.And I just remember listening to all the conversations about
them talking about the other little baby. And knowing, when we -- if we need a G-
tube, I will not tell my family. Because they will not understand. They didn't
understand this other baby, and they won't understand mine, either.

In many stories, Heather‘s fear of Anna becoming classified as severely
handicapped or even worse ―mentally retarded‖ may be synonymous with her family
learning of the Anna‘s g-tube. Due to that fear, Heather may be perceived to go to great
lengths to protect her secret and provide the illusion to family and friends that Anna is
able to eat by mouth. During one of the interviews, Heather began to tell how they were
hosting a birthday party at their home for her husband Duane the following weekend

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where the strong majority of guests would not be aware that Anna has a g-tube. I began
to question the work that must occur to protect their secret. Heather must modify their
physical surroundings as their house contains many artifacts related to Anna‘s
gastrostomy feedings. She restricts access to certain parts of their home and hides other
items that are in the general living areas during social events. Heather must also dress
Anna in bulky clothing that will conceal the physical Mickey button on Anna‘s body.
Hiding the fact Anna has a g-tube in familiar social situations, also limits the
amount of calories they are able to provide Anna that day, which is significant as Anna
continues to struggle with weight gain. Heather describes in the following story how she
will sacrifice feedings in order to maintain their secret during events like her husband‘s
birthday party.
Heather: Well, um, on days like that, we sacrifice feedings or I'll, you know, say
I'm going upstairs to change her diaper or something and hopefully get in an
ounce and bring her back down and let her play. You know, her nap time is
constantly changing depending on what time she wakes up in the morning. Like
today, her nap time was 11:15, so I'm anticipating that hopefully she'll have nap
time like 11:15 on, um, Sunday also -- the birthday party is on Sunday and
hopefully my husband can -- can put her down for her nap time feed. Um, you
know, it's just not going to be a good food day.

Anna has a very difficult time tolerating her g-tube feedings. Her feedings are
done in increments of 30cc (one ounce) by bolus or by the pump when Anna is sleeping,
which can be unpredictable. Even when Heather and Anna are home alone, Heather is
not able to give Anna the daily recommended calories due to Anna‘s tolerance.
However, according to Heather‘s stories, she is willing to skip Anna‘s feedings during
social outings in order to conceal the g-tube from family and friends.

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Heather worries about Anna not being able to eat and how that will impact Anna‘s
future and social acceptance. Heather told the following story while talking about if
Anna‘s g-tube had impacted her mothering of Anna. Heather herself is still struggling
with the placement of Anna‘s g-tube and what that means to her as a mother.
Heather: Um, it's -- it's very different than what I imagined being a mother would
be. (She starts to cry) I don't mean to cry. (a pause)

Karla: I'm sorry. It's hard…

Heather: Because nobody understands (continuing to cry while talking) what it's
like to have, you know, I deal with my mother and mother-in-law who, you know,
just feed her more. Shoving food in her mouth doesn't work. She's not a
quote-unquote a normal baby. We're having -- we're the birthday party for my
husband this weekend and there's going to be a lot of babies there and in my head
I'm thinking how am I going to feed Anna, um, you know. I don't want everyone
to see her G tube. How am I going to feed her? Um,….All these other kids, you
know, you plop them in a chair and say, "Here, eat this.‖ And they eat it, um.
And I don't think other moms realize how easy they have it. They complain about
the -- my sister-in-law, um, has a baby and she's not walking. She's delayed with
her physical skills like that, but she eats -- she's a great eater and my sister-in-law,
I guess, you know, every mom needs to have something to complain about. My
sister-in-law complains that her daughter's not walking yet. And it's like, but how
is -- how's that going to affect her for the rest of her life? You know. Eventually
she's going to learn how to walk and it's -- she'll catch up fine. You know. I -- I
don't know if Anna's ever going to be a normal kid, you know. Is she ever going
to be normal? You know, I know -- I'm not naive. She's a preemie. She was born
under a pound. She has sensory issues that right now I can't seem to beat -- I can't
work on at all because she's just so dependent on this white noise to sleep that she
-- she has these sensory issues that okay, are we ever going to be able to work on
that? And is she ever going to, you know -- we talk -- my husband and I talk
about school, you know. Her going to school and it's like well is she ever going
-- is she ever going to, you know. I'm pretty sure she's not going to be in a regular
school. She's probably going to be in a special needs school. You know, I, I -- I've
seen all my mom's message boards. My preemie and G tube message boards.
Moms that complain that none of the daycares will take her baby because she
don't know how to use G tubes. It's a struggle that every mom with a G tube
doesn't realize that, you know, G tubes are -- are very scary things and nobody
knows how to use them and it's a completely different way of life. You do not
have a normal baby. For us, this is normal.

Karla: Yeah.

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Heather: This is our idea of normal and, you know, I would love to, you know,
go out to a restaurant and order food for her and know that, you know, what are
we going to order for Anna? Anna doesn't eat anything, you know. I never have to
bring food for Anna. You know, a lot of times, we went to visit my grandma last
weekend and we were going to my brother's house for lunch and she said, "Well,
what did you bring for Anna to eat"? and I was…

Karla: Your grandma said that?

Heather: Yeah, and, you know, I just -- I always have to keep reminding myself
oh, well my sister-in-law has baby food. ―They have a baby food. We didn't need
to bring our own feed because they have plenty of baby food.‖ But, it's just lies.
She doesn't eat anything. And they would just be mortified like I am that she eats
nothing. What's wrong with her? She doesn't eat anything.

In this story, Heather herself can be heard to question what‘s wrong with my child
because Anna doesn‘t eat anything. Heather herself is ―mortified‖ that her child does not
eat by mouth. It may be interpreted that Heather‘s struggle over what the future holds for
Anna along with her internal discomfort makes it very difficult to share the information
with anyone. Heather may struggle with understanding how anyone else would be able
to understand and accept Anna with the g-tube as Heather is still working on that
acceptance herself.
Interestingly, Heather chose to reveal a number of stories and information that
family and friends have not been privileged to hear. For example, she chose to share a
blog of Anna and explained to me how I could access some of the pictures that others
were not allowed to see. Heather began to reveal the ―secrets‖ to me at the end of the
first interview. I had shut off my tape recorder and had my stuff packed up to leave.
Heather had offered to give me the address for Anna‘s blog. As she handed me the
address, she said you may want to get your tape recorder back out, because you might be
interested in this. Heather began to give an explanation of how I wouldn‘t find any

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information regarding Anna‘s g-tube on the blog as that was information they were not
sharing. I think the manner in which Heather chose to share that information with me is
meaningful. Throughout the interview, a rapport and trust had been established with
Heather to allow her to feel comfortable, but not until the very end of the interview.
Looking back throughout the first interview transcripts, there had been multiple
opportunities where Heather had chosen to keep the information private until she felt
comfortable revealing the entirety of her story.
The doppler. An important story for Heather is her ―doppler‖. Heather was
originally pregnant with quadruplets. However, through an agonizing process, she lost
three of the babies. Losing the babies, undoubtedly took an emotional toll on Heather,
but in addition she no longer physically felt pregnant or as if she was going to become a
mother. I interpret in the following story that Heather is describing her need to be
reassured that she is pregnant. The doppler provides physical reassurance that she is
indeed pregnant and in her perception, pregnant with a healthy baby. In the following
story, Heather describes her need to be reassured that she has a live healthy baby inside
of her. The Doppler may have also provided her that reassurance independently of the
physicians telling her ―everything was fine‖ because Heather had begun to question their
predictions.
Heather: Yeah, so, after four more days they let me go home. Because they said
the cervix was completely closed and everything was fine. At this point I ordered
a Doppler. Because, I wanted every night before I went to bed, I wanted to hear
my baby's heartbeat. And…it was wonderful to hear her heartbeat. Um, (chuckle)

Karla: Tell me more about the Doppler and hearing her heartbeat.

Heather: Um, I loved it. Every night,… You know, By this point, I was a little
upset because prior to delivering the twins I looked pregnant. And now that there

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was just one and it was only a 15 weeker, I was flat as a board and there was
nothing there. And so that‘s when, I said, I gotta order my doppler, because I
don‘t feel pregnant anymore. I wanted to hear that my baby was still in there. And
so I love… every day, If I ever got worried, I still couldn‘t feel flutters, I couldn't
feel anything. And other than going for ultrasounds, I didn't know I was pregnant.
So, I got myself the doppler. And I loved this thing. You know, three or four times
a day, if I wanted to, Just put the little machine on and boop, boop, boop, boop,
and I loved it. Um…

Karla: It sounds awesome.

Heather: Yeah. And if I ever do it again -- if I ever get pregnant again, the first
thing I'm going to order is my doppler. (both laughing)

My baby is hideous. Heather was in the hospital on bed rest and the placenta
detached forcing an emergency c-section. Once Anna was born, she was given ―a zero
percent chance of survival,‖ but within the first 24 hours of her birth stabilized. Heather
describes Anna as being ―hideous‖ and that she ―was the only one who was excited to see
her when she saw her for the first time‖. In many of Heather‘s very early stories, she
talks about the period when Anna was in the NICU. With the words she uses and the
stories she tells, it is clear Heather is very upset by Anna‘s physical appearance. Heather
takes it as far as saying ―no one should have to see a baby looking like that‖. However,
through the same stories, you can begin to see her struggle as she also so strongly desires
to see her baby‘s eyes and face. The following story is Anna‘s process of self-extubation
when Heather missed an opportunity to see Anna.
Heather: A baby born so small is a hideous sight. There is nothing beautiful or
cute about it. It is actual skin and bones. [Karla: Mm-hmm.] Actually -- just
ribcage. I mean, It, there's not -- there's nothing pretty about it. Umm, and when
she was born, her eyes were fused shut, so we couldn't even see her eyes. Umm,
but umm, her eyes opened about a week later, and four weeks -- exactly four
weeks from the day she was born, she self-extubated. At one pound, like, eight
ounces. She just -- and she was trying for like, two weeks, to keep -- to -- she just,
every time she would try, she'd just -- if she was given access, she tried to yank it
out. And she dislodged it a few times. She came off the ventilator one other time,

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uhh, uhh, she did not pass. They had to put her back on. [Karla: OK.] She
yanked it out the first time, and she lasted about three hours. Umm, and then her,
her numbers were not OK, so they put her right back on. And, I was not aware
because that was in the middle of the night. [Karla: Mmm.] Umm, and I was
very upset that they didn't call me. You know, I would have come. [Karla: Mm-
hmm.] Two o'clock in the morning, I would have come just to see what my
daughter's face looked like. Because, with -- you know, a ventilator machine that's
completely strapped to her face -- sshhh! (in joking to Anna who is babbling
Loudly!) With a machine like that, it's impossible to see umm, her face. And so, I
would have come at two o'clock in the morning to see what her face looked like
without anything strapped to it…

Heather‘s reference to Anna‘s disturbing physical appearance yet her
disappointment in missing the one early opportunity to actually see Anna‘s face is
incredibly moving. Through this story, Heather can still be seen struggling with feeling
like she is becoming a mother and finding ways to connect to her new baby. Once Anna
is born, Heather is not able to hold her or even see her face and eyes. The body is all that
is present to view and that is ―hideous‖. I would suggest Anna‘s stories convey that she
is still trying to connect to her newborn and is not able in the only physical ways she
knows how through holding, touching, and looking at her newborn.
Heather‘s concerns with Anna‘s physical appearance are further reinforced by her
mother. Heather and Duane created a blog to specifically convey Anna‘s progress and
positive information to their friends and family. The creation of the blog was a difficult
decision for Heather, but she decided it was a way to manage all the phone calls and
individuals wanting updates on Anna. However, she remained conflicted as she didn‘t
want certain pictures and information regarding Anna to be public information. The
following story conveys Heather‘s mother‘s response to the blog.
Heather: Yeah, exactly. And I remember I told my mom we started this blog and
my mom was mortified.

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Karla: Your mom was mortified.

Heather: She was mortified. "These are not pictures that anybody should be
seeing.‖ Um, "No one should see your baby in the state she is in.‖ And, the more
time passed on, the more I got into this blog because we just got so many, um, not
followers, but so much support, um in, you know, keep up the good work, and
you know, you guys are awesome, and just keep continuing to be positive, and
things are going to work out. Ummm. And my mom just was -- she did not -- she
wasn't happy about the blog.

Karla: Tell me more about her idea that these are not pictures that someone
should see.

Heather: She didn't want, like, people in our family to see, you know, the baby in
this horrible state. And at one point she, like I told her, stop calling me, just check
the blog. I don't want to talk.

Karla: To your mom.

Heather: Yeah. And at one point, after Anna got off the ventilator and things got
better, my mom asked, "Can you take off the old, yucky pictures‖. And at that
point I told Duane, can you just like archive them into a bundle. Um, let's focus
on good pictures without her on a ventilator. And, um, you know, those are still
pictures that I just don't like looking at, to this day. I mean, eventually Anna will
see them, it's not like I'm not going to show her, but, you know, that was a hard
time for us. And seeing our baby like that is not, um, is not something pretty.

Interpreting from the stories that Heather shares regarding her mother, Heather‘s
mother not only agrees with Heather‘s concerns with Anna‘s physical appearance, but is
also suggesting that Heather should conceal Anna‘s appearance from other family
members. However, at the end of her story, Heather does began to reveal that this is
about more than Anna‘s physical appearance. Reading stories such as this, Heather‘s
decision to keep secrets from her family and friends can be understood as her mother also
suggests the need for secrecy. Implied in Heather‘s story is her frustration with her
mother as she tells her to stop calling her. However, when her mother requests to take off

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the ―old yucky pictures,‖ Heather agrees. Heather appears to not only be juggling her
own needs and concerns, but at times, also incorporating her mother‘s.
Heather’s illness story. As a child, Heather had health complications. As part of
her follow up treatment, she needed to go under general anesthesia for a procedure every
three to six months for four years. Through these experiences, Heather had established a
fear of doctors and operating rooms. She describes an example of this below and how it
influenced her participation when Anna was born.
Heather: Yeah. And, um, 45 minutes the baby was born by . . . uh, by c-section. I
still, I never contracted. Um, my cervix was still completely closed. Um, but the
placenta detached. And um, and it turned out that the baby had the cord wrapped
around her neck three times. Um, and from the c-section, um, I just remember
them screaming, "It's a girl.‖ And I had told the anesthesiologist. I'd had a
sleeping pill, because I had had trouble sleeping in the hospital, so I was already
kind of a little woozy from -- that sleeping stuff is really strong. (laughing) So, I
was already kind of like half asleep while all of this was happening. But I had told
the doctor as soon as the baby comes out, please knock me out. I -- I don't want to
hear. I don't want to know what's going on. Just, I'm done. So, the minute -- that's
the last thing I heard, was "It's a girl.‖ And then I woke up several hours later.
Um, I don't -- they didn't put me to sleep, like, with anesthesia, but they knocked
me out so I didn't remember else.

Karla: Tell me more about your decision, or telling them that you want to be
―knocked out‖.

Heather: I just, uh, I've had so many -- just like Anna. I have so many issues with
doctors, also, and OR's and hospitals that, you know, a c-section is an operating
room and I didn't -- I don't do well in operating rooms. Just with my health
history and having been in so many operating rooms as a kid. That even as a kid,
when I needed to have surgery I always ask, can you, can you either put me out
before going into the operating room, or give me something so that I don't
remember. I just don't like operating rooms.

Heather continues her story, relating it back to her empathizing with Anna‘s
current medical dilemmas and fear of physicians.
Heather: Right. So, you know, I can relate to Anna and having an absolute fear of
doctors and, you know, so I have an absolute fear of operating rooms. So, um, I

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just -- I asked them to knock me out first. And he said I can't -- while the baby is
inside you, I can't give you anything. And I said OK, well, get this baby out and
give me something immediately. And he -- I mean, he had it ready and in the port,
waiting. As soon as the baby came out, that's all I heard, was "It's a girl," and I
was done. And I told him thank you. Afterwards he came and checked on me and
I said, "You know, you did a great thing.‖ Because I didn't need to hear, you
know, the baby's not breathing. Of course the baby's not breathing, and, you
know, they asked me all these things in -- before the c-section. My OB came, and
you know, she said, "The baby is going to be very sick. Are you sure you want us
to revive the baby?" And I said, "Absolutely, without a doubt.‖ And she said,
"You know that means ventilator and oxygen.‖ And I said, "You do everything
possible.‖ You know, full -- you know, as opposed to no heroic measures, full
heroic measures. Um, and she said ok, I just want to make sure we're on -- they
know what that need to do.

These stories suggest Heather‘s fear of operating rooms further complicates an
already traumatic and emotional experience. These two excerpts convey Heather‘s
anxiety about the operating room and having a c-section. I would also question whether
all the traumatic experiences leading up to the delivery contributed to Heather‘s anxiety
and stress. In addition, Heather‘s needing to be ―knocked out‖ was influenced by
Heather‘s fear of what was going to happen to Anna after she was born. As Heather said,
―I didn't need to hear, you know, the baby's not breathing. Of course the baby's not
breathing.‖ I would anticipate Heather knew in those first few hours when she was
unconscious, Anna could have died and she did not want to hear that. Heather had done
all she could up to that point and possibly wasn‘t able to bear a negative outcome.
Heather‘s medical history combined with the process of Anna being born as a micro
preemie has provided a complicated circumstances under which now Heather and Anna
will engage the medical community.
Heather had visible scarring on her face as a result of her childhood illness. She
reports that she was ―made fun of her entire childhood‖. Heather is very concerned about

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how Anna will be perceived as she gets older as she conveys through her stories. She is
also worried as Anna has a birthmark covering one of her eyes and part of her face.
Heather fears further ridicule for Anna as she thinks Anna will be the smallest and oldest
kid in her class and possibly even still have a g-tube. Heather relates her previous
childhood experiences when expressing her concern of Anna being picked on and
ridiculed in the following story.
Heather: Yes. So, I know what it's like to be made fun of and be ridiculed about
something that you just can't control. You know, that's just the way God made
her. God gave her this birthmark and also because of her size. She's, you know, I
imagine that when it comes time to start school, she's not going to be a huge kid.
[Karla: Mm-hmm.] You know, she's probably going to be -- if not the smallest in
her class and probably the oldest because of her age and correcting her age and
based on her developmental delays, you know, we need to adjust development
wise for her education, so I imagine she's going to be the smallest and oldest and,
you know, it's just not -- kids look for any reason to make fun of kids these days.

The story conveys Heather‘s perception of how Anna will be treated in the future.
Heather can relate to be picked on and strongly desires Anna to not have the same
experience she had. However, Heather is not yet ready to do any non-essential medical
procedures on Anna to remove the birthmark.
Friends and family. Heather has a varied support network. She has chosen to
use the respite care provided by licensed vocational nurses funded by regional center.
Currently, Heather is very happy with the individual providing Anna‘s respite care and it
provides her with opportunities to go do daily occupations that are not necessarily
possible with Anna, such as coordinate Anna‘s heath care and grocery shopping. Heather
has also found a strong support network with an online community. She describes
needing to use the internet to find support because ―I don‘t relate to any of my friends‖.
She has connected with two to three mothers online and communicates with some of

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them multiple times a week. The following story begins to describe why Heather has
needed to look to the online community for support and advice.
Heather: Umm,…I don't take family advice. (both laughing) Like they say things
and I'm like whatever. You have no idea. You know, I don't roll my eyes at them.
I just say, "Oh, that's something -- okay. Very nice. Okay. I'll take that into
consideration.‖ Um, I would -- I think probably the most advice -- I think I
respect, um, the advice of my online friends and not just the online -- like there's
an online community that I check every day, but then there's the friends that I am
friends with from those communities that I know more, you know, we converse
on a bi-weekly basis. [Karla: Mm-hmm.] And, you know, anytime I'm having
questions or I don't know what to do, I will, you know, for example, um, my --
Duane was saying something about -- we put Desitin on her G tube everyday
because we're supposed to be putting some barrier cream on.
Karla: Okay.

Heather: And Desitin -- every time I put the Desitin on, she screams her head off.
And I don't know -- maybe the Desitin burns her. So, rather than calling the
doctors who I just feel the doctors know much, you know -- [Karla: Mm-hmm.]--
about that sort of stuff, I e-mailed my friends. What do you put around the G
tube? What kind of barrier cream do you guys use and also the balloon -- I
e-mailed all of them last week. How often do you change your balloon? When do
you check your waters?

Karla: Mm-hmm.

Heather: Because it's easier -- some of these people just -- just like me, have a
barrage of doctors and it doesn't matter how many doctors you have, you learn the
most by doing it yourself. And trial and error. Umm, And so

As conveyed in this story, Heather has found practical advice in her group of
online friends; a kind of advice and support that Heather could not get from her family or
Anna‘s medical team. She is able to rely on them in part because she feels they are more
knowledgeable than the physicians regarding day to day needs. These women are also
living a similar experience as Heather which gives greater validity to their advice.
Heather and Duane‘s family also play an important role in their lives. Both of
their immediate families are involved in their daily or at least weekly lives. Heather‘s

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mother-in-law is a nurse and is the only one who is able to provide child care for Anna.
Heather speaks to her mother on almost a daily basis and they all frequently get together
for family gatherings. The families have played a conflicted role in Heather‘s life. Her
stories convey how she draws on their support, but often feels pressured and judged by
her mother and mother-in-law. The following story provides an example of how Heather
is struggling to feed Anna and the frustration that Heather feels that her family members
don‘t understand and respect what she and Anna are going through on a daily basis.
Heather: Um, yeah. I mean, every time we go there, we get food questions. We
get, can I give her this? Can I give her this? Well, no wonder she doesn't eat, you
don't give her good food.

Karla: Who is, who is go there?

Heather: Both of the mothers. And I don't think they realize… how heartbreaking
it is for you to say that to me. When my life revolves around this baby feeding and
food and weight gain. For you to tell me I'm -- somebody's awake (referring to
Anna) -- um, for you to tell me that. Good morning! You didn't have a good nap
(to Anna as Duane brings her out to Heather). For when we go to visit, when we
go to visit --

Heather: When we go visit, or when we go there for dinner and they shove food
in her mouth or in her face that she is not accustomed to ever tasting before, that
she has no experience with -- and, behind my back.

Karla: Oh, Really.

Heather: It is …

Karla: Tell me about that.

Heather: Papa, where did papa go? (to Anna as she is babbling and appearing to
say papa) Um, It's infuriating.

Karla: Do you remember a specific experience of a time this happened?

Heather: Yeah. We were at my mother-in-law's house and she had Cheetos. She
has a high chair there. And we went, and we sat Anna in the high chair and I went
back to the other side of the kitchen to mix milk or heat up her milk.

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(Anna now appears to be getting more uncomfortable by body language and facial
expression. She then begins to slightly gag, retch, and cough) And -- oh. Are we
going to barf?

At this point during the interview, Anna had just woken up from a nap which
including being on the pump. She was sitting in Heather‘s lap while we talked. All of
sudden it became clear that she was going to vomit. At that point, Heather jumped into
action and Duane came back into the kitchen as he also heard her beginning to retch.
Heather and Duane supported each other and Anna with limited to no words, simply in
actions. The everydayness with which the vomiting occurred was significant. Anna
becoming uncomfortable and throwing up, barely deserved a verbal comment as it clearly
was so common place that it was treated almost like other routine daily tasks such as
brushing your teeth. When Anna finished vomiting, Heather set Anna back on the floor,
quickly finished cleaning up and returned to her story without missing a beat.
Heather: Back to, so I went back to the sink to mix, to heat up milk, just like I'm
doing right now, and when I sat her down in the high chair, there were Cheetos on
the tray. And I had moved them away. Like, and not even -- not really away, like,
oh, I just moved it to the side -- you know, I moved it away….But I didn't say
anything. Because she had asked me before, ―does she eat Cheetos,‖ and I said
―no‖. And I didn't really say anything, and I moved them away. And then I, and
then, when I -- I fed her, it took me about 10 minutes to feed her, and then I went
to go clean out the bottle and the syringe, and by the time I got back, she had put
the Cheetos back on the tray. My mother-in-law put the Cheetos back on the tray.
And before I got a chance they were in Anna's mouth. And gag, cough, puke all
over the place. And I was just infuriated. You know.

Karla: What do you do. Yeah.

Heather: Um, I know that my daughter can't have Chee -- you know, at that time,
she couldn't eat Cheetos. You know. Why don't you understand what I'm telling
you about my kid? That she doesn't eat by mouth. Shoving food in her face is not
going to make her eat.

Karla: It's not going to make it better.

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Heather: Right. As so that's a lot of my challenges, is that, and my mom does it
too. She's like, no wonder she doesn't eat. You don't give her the opportunity to
eat. And that's so far from the truth.

The story clearly conveys Heather‘s frustration with her mother and mother-in-
law. Heather is struggling to meet Anna‘s needs and she experiences further guilt and
pain as they infer that she does not provide food for Anna. Her mothering abilities are
questioned by her own immediate family members. The multiple stories that Heather
tells show her commitment to feeding Anna and providing Anna with the best care that
she can. Her mother and mother-in-law don‘t appear to recognize the mothering work
that goes into caring for Anna on a daily basis.
The Family Story for Jane and Braden: We Want Him to Be Healthy, You Know
Happy, and Do the Best We Can
Jane is a wife and the mother of Braden and Austin with Braden being the focal
child. Jane‘s mother-in-law lives with them to assist with care for Braden. Braden is the
second born for Jane and her husband. He is 21 months old and Austin is 5 years old.
Braden‘s primary diagnosis is a rare genetic disorder. He has congenital hydrocephalus,
agenesis of the corpus callosum, mental retardation, adducted thumbs, reflux, optic
atrophy, and a gastrostomy tube. Jane was referred to me by the director of a local
therapy clinic. We connected easily by phone. She wanted the interviews to take place
while her son was having therapy, so they took place sitting outside a local therapy clinic.
Throughout the interviews, it became clear that Jane did not want me to come to their
home as it was according to her ―a mess and in a constant state of remodeling‖. Jane
initially appeared uncomfortable being interviewed and audio taped, but became more
comfortable as the interview progressed.

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The trade. Jane‘s first indication that Braden was going to have medical and
developmental challenges was at 35 weeks gestation. She found out that Braden had
hydrocephalus, but was convinced that he would simply receive a shunt and ―everything
would be good‖. However, the journey has been much more complicated than originally
conceived. Arguably the most difficult decision for Jane and her husband, Mark, up to
this point had been whether Braden should receive a g-tube. The decision making
process actually began when Braden was four days old, the first time his medical team
recommend a g-tube. At that point, Jane and Mark still believed that Braden was going
to be fine and would not even consider a g-tube. In the following short story, the g-tube
is brought up for the second time while Braden is still in the NICU. However, it is the
first time that Jane actually considers it might be a possibility.
Jane: Yeah, and we‘re like, what is that, oh, we don‘t need that because he‘s
going to get all better, you know? (referring to the first time the g-tube was
recommended) And then, um, then they said, oh, you know, after like three or
four weeks had passed, oh, you know you could get a G tube and then you can
take him home. And I was like, take him home, for a G tube, sure! I was like,
Mark, we can take him home, he just needs a G tube. And Mark was like, hell no,
we‘re not going to have, he‘s not going to have surgery, you know, if it‘s just
going to take him a few more weeks to eat. And I‘m like yeah, you‘re right, it‘s
another surgery, so we kind of declined on it. That was the first time that was
mentioned, that was like, really early on.

Jane was given the option of a trade, that if she was willing to put a g-tube in
Braden, she would get to take her baby home. Jane wanted to bring Braden home and
begin more familiar mothering occupations. She was actually convinced that if she could
just get him home she would be able to support him, ―I thought no big deal because once
I get home I can do things my way and, you know, my way will work.‖ However, Mark
was not ready to put Braden through another surgery and wanted to wait. Jane tells that

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Mark helped her see what putting in a g-tube physically meant for Braden and she was
also willing to wait. However, I would suggest at that point, for Jane, a g-tube, ironically
would have allowed her to mother Braden at home in a more familiar manner.
It was like when you need a haircut. After desperate attempts at home to feed
Braden by mouth, it became clear a g-tube was going to be necessary. Jane felt as though
she had tried everything with her final attempts being marshmallow cream and sugar in
his bottle. The following story gives us a glimpse of the decision making process for
Jane and Mark. They had been given the ultimatum by Braden‘s physician and Jane had
given it her final efforts. However, she was unsuccessful and they, Jane and Mark,
decided it was time for a g-tube. Once the decision has been made, Jane wanted it to
happen, ―today‖. In the following story, she compares the sudden decision making to
waking up one day when you know you need a haircut.
Jane: Um, you know, it was like, OK, I‘ve heard it before, (referencing the g-
tube) um, and you know, that week, he said, ―OK, if he‘s not gaining weight by
next week, you need to do it.‖

Karla: And that was the GI doctor . . . in XXX (a different city).

Jane: In the Valley, yeah in XXX (town in the valley). So, you know, I ran, you
know, I called Mark, ―Mark, they want to do the G tube?‖ ―Oh, I don‘t want to do
it‖…… And then, so, I‘m like, I‘m going to give him marshmallow cream and
I‘m going to put sugar in his bottle and, and I did all that, after a couple of days
we went and we saw our pediatrician. Our pediatrician in XXX and our GI doctor
are good friends, and then, by that time, we were like,….I want to do it today, we
want it in today, we want it as soon as possible. So we were just realized, you
know, it was like, it came abruptly, I guess, we were like hopeful, oh, yeah, you
did marshmallow cream will be the trick-blah, blah, blah. And once we had
decided it‘s not going to work we were just like, we want it done, immediately. So
they, so they started the process.

Karla: Tell me more about that because it sounds like it had been this journey for
you guys, to G tube or not to G tube and then, because you mentioned this, I
think, last week too, because all of a sudden you decided . . .

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Jane: Yeah. Yeah

Karla: I want to understand more how that went from. . .

Jane: I just woke up one day, I was like, we have - - you know like, kind of
when you want your hair cut you‘re kind of like, should I get my hair cut? Maybe
in a couple of weeks. Then one day you‘re like, I‘ve got to get it cut today.
[Karla: Uh-huh.] It was like that.

Karla: Really.

Jane: You know, it was like, oh we can manage him, we can feed him, we can
do this, we can try, you know this, and then, um, just one day it was like, we
woke up, as soon as possible, we need to get it done immediately. Just both of us,
we were like, the sooner the better.

Karla: And at the same time, you guys both sort of had this . . .

Jane: Yeah. Yeah. Yeah. And it was like nothing, like we would have taken him
to the hospital that moment if we could, to have it put in. I think we just somehow
realized that it‘s not going to change and we need to act on it quick because he
was, he looked horrible at that age. I mean you could like see bones in his nose
and he just looked so sick.

After extreme attempts to support Braden‘s oral eating, the time had finally come
for Braden to receive a g-tube. He was 2 ½ months old and still at the same weight since
birth, 7 ½ pounds. The analogy of the final decision compared to needing a haircut is
very interesting. I might interpret that for Jane, she often describes stories and events in
relation to her daily activities. Her decision making is no different. Jane makes sense of
even complicated medical decisions by situating them within the everydayness of her life.
You can’t have him, not yet. One of Jane‘s most meaningful stories is about the
preoperative appointment for Braden related to his receiving his g-tube. The decision
making process has been conflicted for both Jane and Mark. The final consent to the g-
tube signifies a longer and more complicated ―illness‖ trajectory for Braden. Through

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this decision making progress, Braden‘s health was in constant decline. Jane remembers
that she didn‘t even realize how sick he was until she was able to look back at pictures
from that time. In the following story, the day has come for Braden to go in for his post
operative appointment for his g-tube. The physician and nurse examining Braden decide
that he should be admitted to the hospital immediately versus coming back in two days as
scheduled.
Jane: Um,… so it‘s probably like on a Wedn-, yeah, it was probably like a week.
We were just like anxious. We thought our lives would be so much easier once we
get this (the g-tube). You know, it‘s like the best thing right now. We kind of just
thought that relief was coming, definitely. And that was the time we went to
surgery. I, we were supposed to check him in on Wednesday. We went to pre-op
on Monday. She wanted to take him right there. Oh, oh, I was going to tell you
that…They were examining him on the table and then the lady, the physician‘s
assistant was examining him and the surgeon had already left, and she‘s like, hold
on a minute, let me go get Dr. XXX and the two of them talked, I guess, and they
decided they wanted to check him in right away. And I don‘t know what came
over me, (starts a nervous laugh) I was thinking about this after, though,
(indicating after our last interview) I went over, and I like picked Braden up
(demonstrating with her arms what she did) and I went, like sat in the corner with
him, nicely…I don‘t know why I did it, but I totally like picked him off the table
and I‘m like ―no‖ and then, I didn‘t say anything and then I went and I like sat,
there happened to be a chair like in the corner. And I picked him up and I went
like I sat as far as away from them as I could. And then, once I was over there
sitting with him, like, you know, like, some kind of primate, I felt kind of like
silly. (laughing more)

Karla: Did you realize at the moment?

Jane: No, I totally didn‘t realize at the moment. But once I was like over in the
corner like, you know, trying to protect him as much as I could, I kind of felt silly.

Karla: And tell me more about why you think that happened.

Jane: I don‘t know, I was like afraid, I didn‘t want them to take him on a
Monday, I wanted him to go on a Wednesday like we had planned. [Karla:
Yeah.] But they were so worried, I mean, like, he was, he was totally
deteriorating and he looked really, really bad.

Karla: Yeah. Did you see that at that time?

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Jane: Umm,…….No. Well, maybe a little bit, but not, I don‘t think, when I look
back at pictures and all, I‘m like, oh, my god, he‘s so skinny and he looks so
sickly. You could like almost like see through his skin. He looked, he looked just
terrible.

Karla: Wow. What was the physician‘s response to you taking him and . ?

Jane: I don‘t know. I don‘t know. And once I was like over there, I kind of like,
casually tried, trying to move my chair back into the conversation.

Karla: Because you did realize then that you‘d moved yourself and taken him.

Jane: Yeah. Yeah. Then, I felt really awkward. I‘m like . . . (laughing) So yeah,
I kind of like started, you know those chairs are like on wheels or something, I
think I started like skidding myself trying to like, fix it. (laughing)

The decision process has been a twisted path for Jane. She describes herself in
the earlier story as wanting the g-tube in ―today‖. However when given the opportunity,
Jane feels a primal instinct to protect her son in a very primitive manner from the doctors
and the very medical intervention that she had wanted. Jane physically removes Braden
from the reach of the physician. The fragility of the decision becomes clear and her need
to be prepared psychologically as a mother to put her son in the care of a physician for a
surgical intervention becomes apparent.
Braden’s medical team. Braden‘s journey has involved multiple hospitalizations
and frequent doctor visits. Jane has been successful in obtaining medical care for Braden.
She relied on her medical team to guide her decision making, but also is in frequent
negotiation with Braden‘s medical team. Due to the rarity of his diagnosis, many medical
professionals have been very interested in Braden, but it has taken considerable work to
assembly a team of doctors competent to care for him. An important member of

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Braden‘s medical team due to his Hirshprung‘s diagnosis is his gastrointestinal doctor,
which they found after going through two previous ones.
Jane: Um, back to the Hirshprung‘s, they did the first, they did like the little tiny
bedside thing where they do like a real small sample. And then they tested it, and
it came back positive, that he did have the Hirshprung‘s, so positive means that
there were no ganglion cells. And then they said, we want to just do a bigger
biopsy tomorrow, we will put him under, you‘ll have to stay one more night.
They did that biopsy and then they sent it off to some lab in XXX (children‘s
hospital), whatever and it takes three weeks. And that biopsy came back, um, the
first one they did at XXX (children‘s hospital) came back positive, but the final,
she‘s like oh, but there‘s, but there‘s one more test they are going to do that was
like the final confirmation. Pretty sure, he‘s got it, but there is one more test that
might change things. And she calls back like a week later, oh, that final test came
back negative. So, was just all over the place. Um, so then, once we found out
that he had the rare genetic disorder, genetics, and the thing with the disorder is
the migration of, neurocrest syndrome, I think, the migration of these ganglion
cells.

Karla: OK

Jane: We find out that he doesn‘t have, ophthalmology, we go to ophthalmology,
he looks in his eyes, at this time, we thought he was blind. Ophthalmology looks
in his eyes, and he‘s like oh, ―tell me about his problems‖. I‘m thinking all like
head area, like hydrocephalous, oh, they told me has optic atrophy, I‘s like
thinking, just, just like head region

Karla: [um-mm]

Jane: ―Oh, does he have intestine problems?‖ I‘m like ―yah, how can you tell?‖
And he‘s like ―it looks like he doesn‘t have any ganglion cells in his eyes.‖ So, I
am like, ―oh my god, he doesn‘t have any ganglion cells in his eyes,‖ you know,
what about the, you know they told me he‘s got him in the intestines, but it keeps
going back and forth. So, ophthalmology‘s like, ―well I‘ll talk to GI and I‘ll talk
to surgery, and let‘s, let‘s have this retested.‖ And them, um, so the next time we
see GI, I‘m like, you know, ―did Dr. XXX talk to you guys?‖ ―Yah, yah, we did a
really good test. Um, he doesn‘t have Hirshprung‘s.‖ I‘m like ―what‘s your
solution then.‖ ―We‘ll just do an ostomy bag.‖ And then, and then we saw
genetics, shortly after. And then, when we, they confirmed he had the disorder,
which is X linked hydrocephalus, which is used to be called. Um, genetics like
―there are a lot of kids with the disorder that have Hirshprung‘s, have you
considered, reconsidered the Hirshprung‘s?‖ I‘m like, ―well kind of….but they
really like slammed the door in my face. They said no, it‘s not that, we did a good
test. You know, our test was fine.‖ So, she is like, ―I‘ll talk to GI.‖ (starts

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laughing under her breath) So, she talked to GI and GIs like nope. No,
Hirshprung‘s, not doing it again. (slight pause) So then, yah. So then, we‘re like
that‘s it. We‘re outta, we‘re done with you.

Karla: So that was the moment that you decided to…

Jane: Yah, and a lotta, um, we are in this Hirshprung‘s Yahoo group and a lot of
these kids go to Dr. XXX in XXX(different city and state). So, we are thinking,
oh my god, if we just have to pay for it, you know maybe it‘s worth it. So, we
started talking to our pediatrician, oh, you know, there‘s this doctor in XXX that
all these kids go to. He is like the Hirshprung‘s expert. You know, he seems, he
does like bowel management. And I‘m like, is it possible, would insurance pay
for that? And he‘s like, well, you know first you have to exhaust all your local
resources. He‘s like let me send you to my friend at XXX (a different hospital).
So, we went to her and she was great. She was like, yah, let me call your surgeon.
Let‘s, let‘s get this done. We‘ll figure it out. You know, we, um, even if we have
to remove four inches and its, you know, if we, if we know where the problem is,
it could, might work. So, between her and the neuro-surgeon they got together
and decided what to do.

Jane experiences frustration as she did not want to do an ostomy bag for Braden.
She was concerned if they placed an ostomy bag no one would continue to examine why
Braden was having so many difficulties with bowel movements. However, Braden‘s
gastrointestinal doctor would not listen to her. Jane is willing to tolerate the doctors
communicating and disagreeing with each other behind closed doors for a period of time.
However, she eventually becomes frustrated and decides to look for a new
gastrointestinal doctor in another state if needed. Jane must advocate for Braden‘s needs.
She is able to use her resources, which I would suggest in this story are her patience and
communication with his current medical team, to secure better care for Braden. The
pediatrician, who is the primary care physician for both of her children, is a strong
resource in coordinating Braden‘s care. In the end, Jane is able to successfully advocate
for quality care for Braden that is also compatible with her general family needs.

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My mother-in-law moved in: We had no choice. Jane‘s mother-in-law,
Adalhaid, who was a general practitioner in another country, moved to their home to
support the family in caring for Braden. The transition of her moving in and being
involved in the care of Braden and Austin has been very difficult for Jane. Jane is very
grateful and would rather have her mother-in-law in her home versus an outsider such as
a nurse. Jane‘s stories serve as examples of how Jane must negotiate the mothering
responsibilities with Adalhaid with regards to Braden‘s care. Her mother-in-law must be
allowed to assume certain mothering roles of Braden, including feeding and other daily
activities, to keep her happy. Jane‘s mother-in-law living with them, which Jane sees as
unavoidable, has forced Jane to take on new roles in her household. Jane has been
pushed into a kind of caretaking for her mother-in-law and her husband. I could feel
Jane‘s frustration with her mother-in-law as expressed in many of her stories. However,
Jane feels as if there is no other option. I would suggest Jane is willing to tolerate the
inconvenience of having her mother-in-law live with her in exchange for quality care for
her son, Braden. In the following story, Jane describes the kind of work that she must do
to maintain peace in her household.
Jane: Um, So that, and then, but um, back to like to her and Mark, like… what do
they do, they have this sort of vicious cycle they go through, like she‘ll, she‘ll get
mad and she‘ll like leave the house late at night and not tell us where she is going,
like, not talk to us, like, and just be real quiet and like slam things around, slam
doors, you know be extra noisy. I‘ll ask her ―is there something wrong?‖
(change voice to short mean angry tone) ―No, No there is nothing wrong.‖ (voice
back) and then Mark will be like, ―screw that, I‘m out a here,‖ so just like blo...,
he just goes up in our room and shuts the door and is like, ―I‘m not dealing with
that,‖ (change voice to quiet, gentle voice) I‘m like ―Adalhaid what‘s wrong, why
are you doing this?‖ (change voice back to short mean tone) ―Well, Mark doesn‘t
talk to me, so I am not going to talk to him.‖ (voice back to normal) I‘m like
hello lady, like you‘re a doctor, you should like get over it, like, you know, like,
you‘re the bigger, like, you‘re the mother. You‘re the mother. (laughing) Like,

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you kind of expect him, you know, you act like a small child and expect him, like
to like come rushing to your needs or whatever.

The benefit of Adalhaid living with Jane is her relationship with Braden. Through
the stories, Jane suggests that Aldalhaid has taken on a mothering role with Braden that
involves nurturance. It appears that Jane does not necessarily feel that she has the luxury
to enjoy those kinds of mothering occupations with Braden as expressed in the following
story.
Karla: Now, you had mentioned, what is her role with the kids.

Jane: Umm, she‘s is wonderful (emphasis) with Braden, so she like does, she
plays with him for an hour…everyday they like play for at least an hour, one on
one. Like if I play with Braden, I am like answering the phone and dealing with
my other kid, and you know, I have got like a million things going on, but she
can sit down and play with him and he absolutely adores her. And um, so she
watches the kids when I am at work and I work 20 hours.

Karla: Ok

Jane: Um, and then, it‘s actually, she, cause my husband comes home at 5 and I
usually work till 6, so it‘s actually less than 20 hours, but um, she‘s, she‘s really
good with Braden and she is very stern and strict with my 5 year old, almost to the
point where I want to say, hay, be nice to him.

Karla: Really

Jane: Yah, he‘s five, you know, and then like if we have Braden for too long, like
if she doesn‘t get her Braden time, she gets totally mad, starts the door slamming
and stuff like that, like what‘s wrong?—I don‘t get Braden enough. So, she‘s
really, really……(bigsigh)

Jane is clearly grateful for the relationship that Adalhaid has with Braden.
However, she quickly brings in the inequities she sees in relation to how Adalhaid
interacts with her older son and how Adalhaid acts if she perceives she is not receiving
enough time with Braden. The differences in how Adalhaid interacts with Jane‘s two
children are difficult for Jane to resolve. Jane suggests she ―wants‖ to say something to

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Adalhaid; however, through her stories, it is unclear if she actually does. I would
interpret her lack of action may be because she is afraid to jeopardize the care Adalhaid
provides for Braden and even simply the harmony of the household. Although having
her mother-in-law move in to assist with caring for Braden has been beneficial in many
ways, it clearly has come with sacrifices to everyone else in the family and arguably a
fair amount of caretaking work for Jane to maintain the dynamic relationships in her
household.
Equipment as a barrier for social engagement. As social skills are one of
Braden‘s strengths, Jane views his g-tube and being hooked up to the feeding pump a
barrier to social interactions. It is a deterrent for others to be able to engage with Braden
and interferes with his occupations as a young child. Members of Braden‘s medical team
have recommended due to Braden‘s vomiting, that she should try to slow down his
feedings and in addition, begin to move his night time drip to day time to create a more
―normal‖ feeding pattern for him. However, Jane is very resistant as Braden would need
to be ―tethered‖ to the pump for longer periods of time during the day when he is awake.
Jane: Yeah. The speech technologist. He‘s, he‘s like oh, ‗I‘m not an expert, but
maybe you should talk to Dr. XXX about how fast you‘re running the machine.‘
Which doesn‘t seem fast at all. It‘s like five ounces an hour? I mean, kids take 8
ounce bottles in twenty minutes.

Karla: Right.

Jane: Well, he‘s like, ‗well it‘s not like he‘s running around the house, you
know? Why don‘t you just have him on his machine longer and run it slower.‘ But
I‘m like, it‘s, it‘s his life is just easier for us to interact with him when he‘s not
hooked up to the machine.

Karla: OK.

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Jane: Totally, if he‘s on the floor, you want to go pick him up. If he‘s on the
machine, you‘ve got to like, stop the machine, unhook him, you know, it‘s a pain.

Jane continues her story.

Jane: I mean, he‘s like tethered to a backpack. We got rid of our Christmas tree,
we call it the back pack. Do you know the little Christmas tree that you like, hang
the bag on? We got rid of that. That was nice, that was like really nice to get rid
of. I recommend everybody get rid of that. So, we used to have that next to his
crib, it was like a hospital room, you know? But once we got rid of that, we just
put, they gave you a back pack too, so I put it in the back pack, then I hook the
back pack on his crib. [Karla: OK.] So it‘s just, it makes our room, totally less
institutional. And the back pack I can totally pick it up and like, carry it which is
easier.

Karla: OK. So, but do you still feel him being hooked up to the back pack limits
your ability to interact with him.

Jane: Yeah, Yeah, I mean it‘s better, but you know, he‘s still tethered to a back
pack. It‘s hard to just go grab him, pick him up, play with him, you know, it‘s
hard. Because you have to worry about the thing popping out (the actually
button), and it‘s pulling on it and disconnecting.

Karla: So, when he‘s not hooked up to the backpack, how do you engage with
him?

Jane: Um, just like you would, like a normal baby, like you can just reach down
and grab him and pick him up and play with him, you know? Which is more like a
natural reaction to just pick up your baby. But we can‘t do that, we have to like
stop, it‘s like, oh, OK, he‘s on his machine. I can pick him up with the machine,
but then you have to worry about the chord. So it definitely does inter--, it totally
does.

One of the primary ways that Braden is able to participate with adults is by being
picked up and held. The equipment associated with g-tube feedings makes that more
challenging. It interferes with what Jane may consider an important mothering
occupation. Jane wants to be able to interact with Braden without thinking about the g-
tube, extensions, and pump as you would another normal baby. She feels strongly
enough that she has resisted recommendations related to increasing his daytime feedings

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and decreasing the flow rate of his current feedings. Jane will simply skip or alter his g-
tube feeding to allow Braden to be socially accessible to her and family members.
The previous stories also began to show how Jane views the equipment associated
with g-tube feedings. She refers to Braden‘s feeding pump as ―the machine‖ and was
very happy to get rid of the IV pole. The ―Christmas tree‖ stand, IV pole, that was
initially responsible for holding Braden‘s pump, further medicalized their home. The
pole created a difficult barrier for engaging Braden. They have been able to eliminate the
―Christmas tree‖ and move to the back pack which now physically encloses ―the
machine‖ in a rather typically looking child‘s back pack. These steps have helped Jane
move towards de-institutionalizing their home and further mobility for Braden. By
increasing Braden‘s time on the pump, she would have to alter an important enjoyable
aspect of mothering Braden which at this point, she is not willing to do.
A bottle of champagne. In Jane‘s words, Braden‘s diagnosis story was the ―only
part that was really hard‖. Jane had hope that he didn‘t have the genetic disorder and
really wanted to be reassured by a medical professional that everything was going to be
ok. Jane seemed to interpret that being told Braden did not have the disorder would
allow her to put this painful experience of Braden‘s challenged beginnings behind her.
Unfortunately, the appointment did not go as she had planned. Jane told me this story at
the very end of the first interview I had with her. I had actually shut off the tape recorder
and had packed up to leave. Once she had gotten Braden from his therapist, she asked if I
minded turning my recorder back on, so she could finish telling me the story about
Braden‘s diagnosis. Jane began to talk, but not directly address the diagnosis until I
prompted, which further indicates how meaningful yet painful this experience continues

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to be for her. Jane initiated wanting to share the story, but then needed some
encouragement in the moment to begin.
Karla: Was there anything else you wanted to tell me about the genetic disorder?

Jane: Ummmm, no we totally thought he didn‘t have it. Like, I bought a champ, a
bottle of champagne, because I‘m like, I know when we go see her, she‘s not
gonna, she‘s gonna say he doesn‘t have it, when we had our follow up
appointment. (change voice to quiet and intense) And, I‘m like, I know he
doesn‘t have it, he, he, I thought he would do so much worse, than what he does,
cause a lot of the kids do really bad. (to Braden who is now sitting on her lap) ―Is
that a yawn?‖ I mean like some of the kids like die within the first year. Like it
depends like, when this little thing on the chromosome is like missing if
something else fills it in then they live, much better for them.

Karla: OK

Jane: But some kids die within the first year. You know, just do horrible. But the
only, you know, he is doing much better than we would expect, so we, I totally
didn‘t think he had it. And after we had the blood test, the um, geneticist said oh,
it usually takes, we say 6 to 8 weeks to find out the results, but usually we can get
them soon as a week. So, I…, went..., after..., like four days every time the phone
would ring, I would dash, like a mad dash through the house to grab the phone,
like, I know it‘s her, yah or something (slight chuckle). So, I kept expecting for
her to call and say oh, he doesn‘t have it. You know.

Karla: So, you said you bought a bottle of champagne.

Jane: Yah, it‘s still in my cupboard. I am gonna throw it in the trash. (starts
laughing). (while laughing) I don‘t want it.

Karla: You bought it for the phone call or the follow up?

Jane: Yah, cause I was like so sure that they were going to tell me that he didn‘t
have it. You know. And I‘m like, oh, and then we can just put this behind us.
You know everything will be fine. (big breath) We can like celebrate. And it
didn‘t go that way (her voice trailing off and looking at Braden).

Karla: Tell me about when you got the news that he had it.

Jane: Umm, it was hard, you know, it was hard. Yah.

Karla: Was it a phone call or an office visit? (Long silence)

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(Her posture and face changes as she tells the story)

Jane: It was the only part that was really hard (starting to cry). (Silence) I
definitely kept say, like, oh, it‘s probably just their policy not to make phone calls,
you know. She‘ll, she‘ll tell me the good news or the bad news in the office. Um,
so I was like, oh, you know, I kept like reasoning with myself why he couldn‘t
have it. (pause) It was scary (continuing to gently occasionally cry) Cause I
kept, up until that point, I kept thinking, oh, he‘ll get better, he‘ll do better. Then
we find out, you know. He will never do better. (pause-sad) Yah. And then I
know, we were like, we just accepted it. You know. It just took awhile.

Jane once again marks this very important story in her life with a common
occupation. She purchased a bottle of champagne and was planning on having a
celebration when she was given the good news. However, the champagne bottle still sits
in her cupboard over a year later. The champagne bottle continues to have significance
for Jane. Is it that throwing the champagne bottle away would create a concrete end to
experience of hope that she had or possibly the event was so painful that Jane can‘t even
bring herself to interact with the champagne to throw it in the trash? It is unclear. Jane
has been forced to become involved with many unfamiliar mothering occupations,
negotiation of the medical communities, and new roles and responsibilities within her
own home. However, Braden‘s journey has just really begun and I anticipate it will be
quite awhile before Jane is able to throw away the bottle of champagne.
The Family Story for Akemi and Micah: I Will Do It Right Next Time
Akemi is the mother of Molly and Micah, with Micah being the focal child.
Akemi is married to Madden. Molly is five and Micah is two years, eleven months in
age. Molly has a diagnosis of autism. Micah has a diagnosis of autism, gastrointestinal
abnormalities, frequent illness, and has had kidney cancer. Molly was part of a research
study where she received her diagnosis of autism as an infant. Micah actually received
his first diagnosis of autism at four months of age as he was also in the same research

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study. It was discovered Micah had kidney cancer when he was nine months old. Micah
had struggled with severe vomiting since birth, 10 – 15 times per day. Even with the
severe vomiting, Micah was able to thrive on breastfeeding. As he approached nine
months, his ability to sustain by oral means became more challenging. Due to his
diagnosis of cancer and associated treatments, Micah was started on TPN during his first
hospitalization. He remained on TPN feeding for a full year after finishing his
treatments. At that point, Micah received a g-tube, which he has had for about 9 months,
and continues to use today for the majority of his calories.
Akemi was referred to me by the director of a therapy clinic. She was easy to
connect with by phone. The interview schedule took a little negotiation in the beginning
due to her complicated schedule and Micah being ill. The interviews took place in
Akemi‘s home. Akemi and her family live in an upscale gated community in the greater
Los Angeles area. She has a full time housekeeper/nanny who participates in the care for
the children.
Akemi and her husband are from Taiwan. Akemi speaks English very well.
However, often during the interviews, she would ask to me repeat the question or take a
moment to think of the word she was trying to say. At times during the interview, I
would repeat what Akemi has said for further clarification as I wanted to make sure I
adequately understood her. Akemi and her husband participated in an arranged marriage
coordinated by their parents, which prompted Akemi came over to the United States. An
important aspect of the family‘s life is their business, which Akemi simply refers to as
―the company‖. All the family members work and spend extensive amounts of time at
the company. The children also spend most of their time at the company where there is a

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daycare for the all the extended family. The nannies are primarily responsible for caring
for the children in this environment.
Akemi‘s mother and father came to California when Akemi‘s first child was born.
They are a supportive part of her life. Akemi‘s in-laws and extended family are also
involved in Akemi‘s life. Her brother-in-law and sister-in-law live in the two homes
adjacent to hers. However, she says that she never sees them as they are always at the
company. Akemi is grateful for the different ways that her husband‘s extended family
has supported them, but ―hates it‖ as well. She says her husband‘s family is over
involved in her life and she never has any privacy.
Akemi speaks of being privileged in her life in Taiwan and currently. She tells
stories of how she always had the money to buy whatever she wanted and has been taken
care of ―like a child‖ even in her adult life and as a married woman. Akemi tells a story
of how she has never cleaned a bathroom in her life to further emphasize her lack of
responsibility over the years. However, she does tell the story as she is embarrassed and
describes how she wants that to change.
Akemi and her brother, who still lives in Taiwan, both have a genetic chronic
illness. Akemi describes the impact of her disease on her ability to mother her children.
Her stories depict how it limits her physical ability to engage with them. However, she
describes the biggest barrier imposed by her disease is how it impacts her mental capacity
because of the severe chronic pain she experiences.
With the background provided, I have begun to demonstrate the complexities of
Akemi‘s life. Micah and his g-tube are firmly situated within a number of narratives that
create the family‘s day to day experiences. I interviewed Akemi four times with each

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interview lasting an average of two hours. She is an excellent story telling providing rich
data that is compelling to read. While her stories contributed to the overall themes
discussed throughout the manuscript, Akemi also framed her stories slightly different
than the other mothers. Akemi‘s narrative resembled a personal transformation as an
individual and as a mother. She describes being deeply changed by experiences
associated with Micah‘s development and illness trajectories. I am going to highlight
four particularly meaningful stories that shaped Akemi‘s personal transformation and her
mothering experience.
Learning to be a mother. Akemi wanted to become a mother and had
preconceived ideas of what that would be like for her specifically. Through stories, she
describes these ideas as being shaped by growing up in Taiwan and participating in her
husband‘s familial culture. Akemi discusses how having children with special needs
gave her an ―unexpected‖ mothering experience. I interpreted from her stories that
Akemi had not planned on necessarily taking an active role in the everydayness of
mothering her children. The other children in her extended family are cared for by
nannies at the company and then also at home in the evenings. However, she has chosen
to be involved in the day to day aspects of raising her children, which is dramatically
different than her family culture. Akemi tells that initially when her daughter was born,
Molly was cared for by a nanny. However, through Molly receiving the autism
diagnosis, Akemi was able to transition into a more active parenting role through
therapies and interventions. Micah‘s medical challenges provided further opportunities
for Akemi to provide increased direct care for her children. In the story below, we began
to see how Akemi feels having children has changed her life.

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Akemi: Well, you know I never thought I could do like, you know, all this stuff,
like, you know, taking care of a sick child and……

Karla: You never thought you could?

Akemi: Yeah. I never thought I could, yeah, I just – you know, like I said. I was a
different person, you know. I never had like a lot of responsibilities, you know. I
would just like live day by day, you know, kind of enjoy life and now it‘s like – it
feels good to, you know, to know that, oh, I can – like if I put my effort into it I
can pretty much do anything. (gasp/laugh)

Karla: Yes. And so, you said that you were a different person, so before you had
Micah you were a different person?

Akemi: I was different before I had Molly (older daughter) because I ….

Karla: Molly.

Akemi: Yeah, like I said, I was struggling when she was first born and you know
didn‘t know how to be a mother, yeah, and now I love being a mother too, and I
love these two kids dearly and –

Karla: I can tell.

Akemi: - and want nothing different. Yeah, but before, um, – well like I said, I
sort of just lived day by day. It‘s like I have lot of time, what do I do, you know,
like my husband always works late. So, OK, I always go to main place waiting for
him, and you know, just spend money on, like browsing internet. You know. I
was thinking of like, you know, going to like business school for my master‘s
degree, but I thought oh, I just didn‘t want to do like something difficult, like you
know. I just wanted easy life. Something like that, and never really stayed at the
house much, because, you know, like I said, we have everything at the company
so everybody leave in the morning, you know, we eat there, we have our own
restaurant, so we come home at night to sleep, pretty much. And I hardly ever
went to the back yard, you know, I never knew what kind of trees we had. It was a
different life.

Akemi‘s story begins to give us insight into how having children has changed her
life. Previously, I would argue she lacked confidence and aspirations. She describes
herself as being taken care of and wanting the easy life, not pursuing anything new.
Akemi followed the routine of all of the other wives in her husband‘s family, making a

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point of telling me that she didn‘t even know what kind of trees she had in her own
backyard. Akemi didn‘t believe that she was even capable of being the kind of mother
that she currently has become, but now describes it as not wanting it any other way.
March 20th, the day our life in the hospital began. Akemi tells the story of
March 20
th
as the day her son was diagnosed with cancer and their life in the hospital
began. She began the story with the days preceding his diagnosis. I would suggest she
remembers those days with great guilt and anguish as can be heard in her stories. Akemi
physically discovered Micah‘s tumor in his abdomen, but it took a few days for Micah to
receive the appropriate medical care and diagnosis. She still seems to struggle over those
few days wondering if it would have made a difference in his illness trajectory if she
would have been more assertive. I interpret the intense guilt she feels is further fueled by
her own questions of inadequacy of her early parenting experiences of Molly and Micah.
As she said, I ―didn‘t know how to be a mother‖ when talking about mothering her
children as infants. Below Akemi tells the story of March 20
th
one of the most significant
days in her life.
Akemi: OK. It‘s…OK (laugh). I have to go back a couple days. It was March 20,
it was Tuesday. On, I would say a week before that, I saw like, his, you know, his
stomach was kind of distended. Like, bigger than usual. I even told my mom, like,
oh, like, all of a sudden he just looked fat. And then on Friday I saw a lump on the
right side, like a very hard, like a ping pong ball. And I talked, I told my husband,
oh, I‘m going to take him to urgent care right now. Um but then he said, you
know, he came and take a look and no, it might not be something serious, like,
let‘s go to a pediatrician. So, you know, his ABA therapist was coming, and, OK,
let‘s finish the session and take him in the afternoon. So I went in and the nurse
practitioner saw him, you know, she‘d like touch it and check the butt, if, you
know, maybe like the pooh-pooh got stuck in the, like, did he, did he have bowel
movement? You know. Did he throw up, like, a lot? He just like, went one time,
like, not too much. And he didn‘t have any symptom. He was always happy. And
Dr. XXX (his neurologist) thinks that, you know, part of it is that he‘s autistic.
He, he has really high pain tolerance that he‘s been cut, you know, been doing this

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and that and, I mean, I think other kids would like scream all the time but, but
he‘s not. And so, the nurse said, oh, let‘s come back next week, you know, like it
might go away. And, so, Tuesday, or Monday I called back the office, the
doctor‘s office but this nurse wasn‘t there. The other person said, oh, it‘s better,
you know, if the same person would see him so, you know, he could have an idea
if it‘s smaller or bigger. So I went back on Tuesday [Karla: Uh-huh.]….and the
nurse came and said, oh, you know what? It looked… didn‘t look good. Like, you
know, that it didn‘t go away, so, let‘s have an x-ray. So she called, she was going
to give me like, you know, a sheet to go to an outside x-ray, but then she said,
OK, I‘m going to call, ask one doctor to come take a look. So, the one doctor
came, and said, you know what, let‘s go to the emergency room. And I said, like,
do you think that‘s something serious? He said, no, you know, but like over there,
um, you can like have everything all done there. They could check the blood, they
could, you know, they run all kinds of scans there. It‘s like faster than you go to
the outside testing place.

Karla: Uh-huh

Akemi: So, we went in, we got there at noontime. You know, he had x-ray and
ultrasound and blood tests and the doctor came back, um, around six o‘clock. He
sat on the trash can (quick laughter). He‘s kind of like, oh, how are you guys
doing? Um, looks like he has a tumor and we don‘t know where it‘s coming from.
Like, we couldn‘t tell, with the X-Ray and ultrasound. And I was like
(gasp/laugh), OK, tumor? (laugh) Like, you know, TUMOR? I, so I look at him
and just thought like, oh, my God, you know, he‘s dying. Like, you know, he
must be dying. Like, at this minute, like, you know, it‘s this big and all we know,
right, it was this big, it must already spread like from head to toe (sort of
laughter).

Karla: Oh, no.

Akemi: Yes. And so he must be dying. (laughing) So I was crying and crying
and, um, and the doctor wasn‘t really like informative, you know? Like, so I said
to him, so, it‘s, it‘s cancer? He said, uh, it‘s a tumor, you know, we don‘t know
what kind, what type of the tissue. It‘s a tumor. Because it could be benign, it
could be, you know, like cancer tumor. [Karla: Right.] So, we‘re going, we‘re
going to admit him. I said, oh, we live close by, like can we come home and just
go in for the test? (laughing then as she finishes the sentences) He said, no, I
cannot. So, yeah, so we waited…

Karla: Were you there by yourself?

Akemi: No, I was with a babysitter, the, another one, she already left us, like, last,
last year. So, yeah, I was very sad and I, I couldn‘t get over the fact that… I
wanted the ultrasound and X-Ray done on Friday, you know. I totally felt like it

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was something serious, but then everybody else told me, like, may, might not be
something bad, like, you know, just like, kind of calm down. And even when a
nurse said, like to go home, I wasn‘t comfortable. Because I, you know, wanted
the…

Karla: Because you knew.

Akemi: Yeah, I just wanted…I knew there was something. And I didn‘t, I didn‘t
buy the, you know, her thinking that it was just some gas accumulation, you
know? And, yeah, but then, like, OK, let‘s like trust the professional.

One aspect of this story that is remarkable is the detail that Akemi remembers
surrounding the day of March 20
th
. The details are seen in the small excerpt that I have
chosen, but also in related stories. Akemi appears to almost have a live picture of the
events from that day and days leading up to it, which mark the date and story as
incredibly significant. Akemi even remembers the physician sitting on the trash can as he
was speaking to her.
Akemi‘s guilt and second-guessing is demonstrated through this story. She
questions why she didn‘t trust her instincts when he was becoming ill and did the delay in
services make a difference. Akemi describes how initially she trusted the professionals in
this situation. This is a very important piece of information in Akemi‘s story. Akemi had
the experience of mothering a child with special needs, but had not yet had to advocate
within a medical context for her children. Akemi begins her journey with Micah trusting
the medical professions more than her own instincts as a mother. I would suggest Akemi
chooses to include this statement as she no longer ―trusts the professionals‖. She has now
developed into a mother that is a strong advocate in the medical community for her
children and no longer takes a physician‘s diagnosis as being necessarily true. Akemi
continues her story of March 20
th
below. Through telling the events of the day, she

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continues to describe the difficult emotions associated with the experience and her regrets
for not trusting herself. We also began to have some insight into Akemi‘s coping
strategies and how deeply these experiences are still impacting her.
Karla: Uh-huh. And so they sent you home on Friday and you went back again on
Tuesday.

Akemi: Yes. And, yeah, even on Sunday, actually he started to, to, like not feel so
good. Like he cried a lot, like in the evening and his par-, Madden‘s parents were
here. And…. I said, alright, maybe he should go see a doctor, and they said, oh,
don‘t go to the ER right now, you know, it‘s going to be too crowded. Yaddy,
yaddy, yaddy. How do I put - OK let me put it this way: just because I had not,
had not taken him to the, you know, the ER on Friday, even though pretty much I
think the, the end result might have been the same, you know, it‘s just couple of
days,…. but, I just need to know if it would change anything. And the fact that I
couldn‘t do it again, because, you know, it‘s already there, so, yeah, so it bothers
me. Yeah

Karla: So it still bothers you that you didn‘t just take him to the ER on Friday?

Akemi: Yeah. Though, I, you know, I seem him, like, too perky. Because I have
to talk and laugh at the same time otherwise I will cry and I can‘t stop (laughing).
I‘m really emotional. Yeah. And, um, so, so it was very sad, I would say, I was
very sad and I, I blame myself a lot that, you know, I didn‘t, I didn‘t do the right
thing. I didn‘t, like, trust myself and, and yeah, and so, he was in that night, you
know, he was like…

Karla: That Tuesday night.

Akemi: Yeah. And, and he seemed to like, be much more sicker, like he cried, he
started throwing up and then, in the room, you know, they put two patients
together and he was in this crib, like, you know, aluminum crib, like, so heavy
and looked like a cage. (gasp/laugh) Like, this is it. (seriously) When, you know,
when they transferred us from the ER to the floor,…. by a wheelchair, I was
holding him and… my husband said, you know, it‘s the third floor at XXX(local
children‘s hospital) and he said, oh, this is an oncology floor. It just, it sounds
bad, like, OK, this is it, it‘s not just a hospital, you know? (gasp/laugh) It’s the
oncology floor!

Karla: It‘s the oncology. It‘s not just the hospital.

Akemi: Yeah, And like, look around, like, you mean all these kids have cancer?
Like, all of them? And we buddy with, like, another baby, you know, like two

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months younger than him. And they were already in like two and a half weeks.
So, you know, they pretty much knew, too. And the mom was like, kind of like
my coach, because I was crying, you know, for the whole night. I was really
struggling. And Micah would like, I had to break. He had to stop, you know, to
fall asleep. And then when we put him down, like, he woke up and cry, you know,
with the IV, you know, the line would kink and the pump would beep. And it was
just crazy, chaotic. But this mom, she‘s a nurse practitioner, herself.

Karla: Wow.

Akemi: Yeah. So there was, she came to like, show me, OK, if it beeps, you can,
you can, you‘re not supposed to work with the pump but I do it all the time
because, because I know how to use it. Why not? Why let it beep and, you know,
bother other people? And, yeah, it‘s just like, fix things, and we start the pump all
the time. And, you know, that mom would come sit with me, you know, when I
was crying. And I didn‘t have anything for Micah. My husband came home with
the babysitter to, like, you know, get all the clothes and stuff there, and this mom
gave me, like, somebody bought a boy‘s clothes for her girl. And so, she just gave
it to me. It was, you know, just one clothes that we need because we didn‘t have
the extra one. And so, yeah, that was very nice, and, you know, she got…on the
third floor we could, you know, go in the kitchen, and like the linen room, and
like, the shower room ourselves. Because they, they pretty much try to make it
like a house. But you can‘t do that, you know, anywhere else in the hospital. So,
this mom like, went to get all, you know, bed sheets, pillows and all this stuff,
and, you know, she made a bed for me.

As Akemi is being wheeled onto the oncology unit, she is being catapulted into a
medical world she didn‘t know existed, possibly similar to when her daughter was first
diagnosed with autism. The visual imagery that she provides allows the listener to almost
picture and feel her experience. Akemi is overwhelmed and finds support in another
mother at the hospital. The significance of this is greater than the story can portray. This
is the only time Akemi ever speaks of receiving this type of caring from another person in
all of the interviews. I would suggest that Akemi is vulnerable and traumatized at this
point, making her more open to outside support further marking this story as important.
Akemi was fortunate to have this particular woman for a roommate in this experience.
Interestingly, Micah and this woman‘s daughter only shared a room for one night, which

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is not what I would have guessed when hearing the story and the caretaking that Akemi
received in that one evening. Akemi was devastated and this other mother was able to
support her by caring for her in a motherly way and beginning to show her the inside
world of the oncology floor.
Micah transitions to the g-tube. Micah, Akemi‘s son, had been on TPN for a
full year following his chemotherapy. The trade for consenting to Micah‘s g-tube was
decreased risk of infection and fewer hospitalizations. Micah was frequently ill with
fevers, due to the risk of line infections; he had to be hospitalized with every fever.
Although, Akemi understood the risks associated with extended TPN feeding, she had
become accustom to TPN and was not ready for the placement of a g-tube. Micah‘s
medical team had suggested the g-tube before, initially Akemi refused and the next time,
Akemi consented, but then Micah‘s medical team decided it was not a good time in the
context of his treatment for the kidney cancer. In the following story, the third
opportunity for the g-tube insertion, Akemi has consented for the g-tube, but still has
concerns as she has become accustom to the TPN. Micah was on both the g-tube and
TPN for just over a month while he was transitioning to the g-tube, so Akemi was using
both methods for nourishment.
Akemi: Right, but you know, before, like when we first started with the G tube
feeding, we could not pour it into the syringe. It just wouldn‘t go like….

Karla: It wouldn‘t.

Akemi: It wouldn‘t, his stomach wasn‘t, like, you know, like from not having
food for pretty much a year, having a severe reflux and that Antro web, all the
inflammation. Yeah, it wasn‘t normal at all. And when we first started, we
actually ran it like two hours per meal (for 90cc). So, can you imagine, you know,
like, so somebody had to, follow him around all day. When the first meal is done,
he got maybe an hour break and then, you know, we started again. So, it was like

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I was going crazy. It was very difficult, living like that. And at that time, I was
thinking, TPN was much easier. You hook him up at night and then disconnect in
the morning.

Karla: Yeah.

Akemi: But now like, we all stuck with the pump and the tubing.

Karla: Yeah. So, you weren‘t necessarily happy to get off the TPN.

Akemi: Right, right, at the beginning, and you know, he was still like vomiting. It
was a struggle. Yeah, really.

Akemi was encouraged to consent for the g-tube for Micah to support greater
overall health and decreased infection, which were definitely benefits that were achieved.
However, the process of transitioning to the g-tube from TPN was time consuming and
labor intensive for Akemi. The g-tube feedings further disrupted their daily occupations.
For Micah, the g-tube actually decreased his mobility as he frequently now had to be
hooked up to his feeding pump during the day and Akemi had to follow him around when
he was hooked up. Initially, the g-tube actually worsened Akemi‘s primary concern,
Micah‘s vomiting. Akemi‘s story tells how resistant she was to the g-tube and her
primary disappointments. However, as Akemi becomes comfortable with the use of the
g-tube along with Micah transitioning off the TPN, she is happy with her decision.
I bought ten purses that day. As can be seen in other stories told by Akemi, she
often questions her son‘s mortality. Akemi seems very fearful of having Micah die. In
her story telling, she would suggest that she didn‘t want to be the one who killed him
while doing a medical intervention such as drawing blood from the central line. Earlier
in the interview, I had questioned if she had thought Micah was going to die at one point.
She told me a brief story. However, as we were closing the interview, she suggested that

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she had one more thing that she wanted to tell me regarding Micah possibly dying. She
told the following story regarding the day that Micah had his kidney tumor removed
which had grown to be slightly bigger than a football.
Akemi: I want to tell you this one. It‘s something out of my nature, when you ask
about if Micah was dying, if I thought – and I wanted to spend time with him. So,
you know, we play a lot, you know, and I pretty much spend my waking hours
with him, like, but I truly enjoyed it. It wasn‘t like, you know, I had to do it just
because I had to do it. And then – then the day that he had the surgery I wasn‘t at
the hospital I actually went shopping. Yeah, my husband came, you know, we
sent him in, the doctor said it was going to be about six hours or more, so…. I left.
And, you know, I asked the doctor before, let‘s say if something were to go
wrong, like, you know, to the point where you need to call the parent in to say
goodbye, usually would the patient be conscious, like, would you – like would a
patient be hearing the voices and stuff. And he said probably not. So I said, then
I‘ve done my best, I‘m going to take off, you know, like. I don‘t need to see him
dying. If he were to be dying, it‘s OK, like – yeah, I‘ve, I‘ve done the best I could
so, I‘m going to go shopping. And then I went. I went. I actually bought like six –
no, ten purses that day. (laughing)

Karla: You bought ten purses that day.

Akemi: You know, it was out of craziness.

Karla: Uh-huh, yeah.

Akemi: Yeah. But, but I left, and I even called Dr. XXXX, Micah‘s neurologist
because you know, she said like keep her updated. And I said ‗guess where I‘m
at‘ (in a young sing songy voice), and she said ‗hospital‘, and I said ‗no, I‘m at the
mall‘ (laughing). And she was like ‗good for you‘.

Karla: Huh, wow. That‘s such a powerful story.

Akemi: Uh-huh. And I didn‘t tell this to a lot of people because I know it would
be against like, their thinking like, you know. I didn‘t even want to hear what –
what the feedback would be and – and I thought that day was totally for me, and
you know, it was something I would be proud of doing. (gasp/laugh) You know,
if I – like could take back the time, I would still do the same thing. And it was like
really nothing. They just needed one parent to be there, you know. Like the doctor
would send a nurse to come and update, OK, like we‘ve got to this part, this part.
But –

Karla: Right.

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Akemi: Yeah.

Karla: And so, then when did you go back to the hospital?

Akemi: When my husband called and the doctor said they would be done in
maybe half hour, you know, when they start to put him back – sew him back up
(gasp/laugh). Yeah, so I went back. Yeah, in time.

Akemi‘s story is powerful. I interpret she felt she had done everything she could
up to that point. She had provided the best possible care that she was capable of and now
could not bear to be present if Micah died. His care was now completely out of her
control. However, Akemi seems to be aware that it is almost unbelievable that she would
not be present during the surgery, but even more significantly go shopping. But for
Akemi, I would suggest shopping is a familiar and comforting occupation, so in many
ways it makes sense. Akemi told the story in a way that made me question if she was
testing my response or if she truly felt comfortable and trusted I would simply listen. She
then goes on to tell the rest of the story leading up to the day that she bought ten purses.
There were many miscommunications the week before the surgery as Micah‘s tumor was
becoming more and more problematic. The tumor needed to come out immediately, but
there was a miscommunication on who was capable and comfortable removing the tumor.
The week before Micah‘s surgery, Akemi and her husband spent negotiating with the top
surgeons in the greater Los Angeles area and in New York all while her son was
deteriorating. Akemi had decided that she wanted him to go to New York for the
surgery, but Micah was too ill and the surgeon from New York declined. The surgery did
finally take place in the original hospital where Micah was located. Akemi says about
her experience that week, ―I just wanted to be a mom and have the doctor do that-then I

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had the trust and comfort,…but after that, it‘s like no more‖. Akemi‘s decision to go
shopping is better understood when situated in the grand scheme of what was occurring
around her. She had been negotiating roles around Micah‘s care. I would interpret at this
point; she simply wanted to be Micah‘s mother.
The stories that I have chosen to share from Akemi begin to tell us how she has
been impacted by mothering her children. Mothering has been a transforming experience
for Akemi. She says that she can hardly recognize the person she used to be and when
discussing her new found occupations of mothering and assertiveness she says, ―I love
it‖. Akemi acknowledges that may of her skills were learned through tragic situations or
as she describes being ―unlucky‖. However, currently, both of Akemi‘s children are
doing quite well and she expresses gratitude for what she has learned from them.
The Family Story for Frana and Heath: The Balancing Act
Frana is the mother of Heath and Joanna with Heath being the focal child. Heath
is three years old and Joanna is nine years old. Frana is married to Adam. Adam works
in business and Frana worked in retail management before she had children. Frana is
from Germany where her family continues to live. Frana and her family live in the
greater Los Angeles area. Frana was referred to me by the director of a therapy clinic.
Frana was very interested in participating in the research and we began to communicate
by phone and email as her son was frequently ill, so interviews often needed to be
rescheduled. Frana suggested meeting at a café for our first two meetings. I initially was
a little uncomfortable with the setting as it was quite a public place for the interviews.
However, after meeting Frana and beginning the interview process, it became clear the
café was a very appropriate place for meeting her, specifically. Frana enjoys cooking,

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food, and the social experience around eating. The café environment provided a very
comfortable place for Frana to share her stories while we enjoyed a cup of coffee or a
meal. Frana was very comfortable being interviewed and often wanted to interview me at
the same time, answering one of my questions and then immediately asking me a similar
question. Although Frana was insistent on the first interviews taking place at the café,
she was just as insistent on the final interview taking place in her home. Frana wanted
me to meet her family, see her home, show me Heath‘s g-tube supplies, and as it turned
out have a bowl of chili.
I knew something was wrong. Heath was born full term at 7 ½ pounds with no
anticipated difficulties. However, Frana knew the first time she fed him that something
was wrong.
Frana: …So, it was beautiful (Heath‘s birth). I mean everything was fine. And
then when he was born, he latched on perfectly, no problem. And after a few
sips, he started throwing, blowing bubbles. And I knew there was something
wrong.

Karla: Was that right away, the first day, then?

Frana: It was within minutes after the birth. I mean, you know, they cleaned
him up and then wrapped him in the blanket and gave him to me and we started
nursing and, you know, blew bubbles.

Karla: Didn't work.

Frana: And I knew something was wrong. I just knew it. And, um, they said,
well the doctor said, you know sometimes they get a lot of mucus, you know
they swallow a lot and it's stuck in there when it goes, when the birth goes fast,
they, you know. So, they suctioned him and, you know, just………it just wasn't
right……

Frana knew right away that something was wrong. Heath was Frana‘s second
child. She already had a more typical parenting experience and through her mothering

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knowledge knew this wasn‘t right. It was quickly discovered that Heath had tricuspid
atresia (TA), esophageal atresia (EA), and tracheoesophageal fistula (TEF), which all
required immediate surgical intervention. Looking back, Frana also feels there were a
number of other things that happened indicating Heath was going to have difficulty. She
described the placenta as being ―kind of strange‖ and ―didn‘t look right‖ as compared to
Joanna‘s placenta. Frana described Heath as ―he did not want to come out‖ as he was ten
days past his due date and her doctor ―swiped (her) membranes twice‖. She also
remembers that ―I couldn‘t eat the whole pregnancy,‖ which to Frana was another
indicator that something was wrong prenatally. Through her stories of realizing that she
had known all along, Frana began to make sense of her pregnancy, birthing experience,
and laid a foundation for future experiences that she would have with Heath. In Frana‘s
stories, she often described her need to find a way to make sense of all the information
that she had experienced regarding Heath‘s medical diagnosis complicated history. Frana
starts back at the very beginning to pull all the pieces of information that she had
available to get her prepared for the journey ahead.
Through her stories, Frana struggled with how to make sense of having a child
with special health care needs. She had every medical test available, but they gave her no
indication that she was going to have anything but a healthy baby. She was not prepared
even if when looking back she somehow felt as if ―she just knew‖. In her words, Frana
felt ―arrogant‖ to expect to have a healthy baby. At the same time, she is grateful for the
―medical wonders‖ that were able to save her son‘s life, but was still grieving for the loss
of her healthy baby.

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Frana: You are stressed out to your limits. I mean beyond the limits that you
cannot even imagine you would even reach. So, yeah it's you know and for
Joanna too I mean, you know, that's why I said in the very beginning you‘re never
really prepared, you know, if you know during the pregnancy or after the delivery.
You're never prepared because it's such a shock, you know, and I tell you another
aspect…. with all our medical wonders that we've had over the years and what
they can do now with these kids and even with Heath you know. Up to about 70
years ago, you know, there was all open chest surgery, up until then the kids died.
[Karla: Um-mm.] Then they started the open chest surgery and um and then um
you know it was literally just about 8, 7 or 8 years before Heath was born that
they started doing it laparoscopically, which is mind boggling to me. [Karla:
Yah.] I mean it's, it's amazing. But even with all that I feel, or I felt, I remember
coming home and standing in the shower and having the water run down and I
remember lost, not knowing what is the water (starting to cry) and what are the
tears because it was so, it was so brutal and I, I really felt arrogant for assuming
that you're going to take a healthy child home. (paused and stopped crying) And
it really, that stuck with me and still to this day sticks with me because um, yeah
you do the tests, you know, whatever -- Down syndrome whatever it is. Um, you
know, I had because of my age I, both with both pregnancies I had an
amniocentesis and, um and um but you still, you know, you get the results and
everything comes back you know fine and you think you're going to have a
healthy child. So, you know it's -- I felt pretty arrogant, I thought you know -- do
you know the Holland story?

Karla: Yes. I do know.

Frana: Yep. And in the NICU there was ah, still to this day is a Dutch
neonatologist, little guy,…. middle age. And I made, somebody sent it to me
while Heath was in the NICU and I printed it out and um I really just felt so
touched by it that, you know, that I really wanted to, you know, leave it in the
library for other people to take it. (still sniffling a little) And I walked around I
remember and asking, you know, do you know the Holland story. And, Dr.
XXXX, I think is his name. He said ―what's wrong with Holland?‖ (both
laughing) He was hilarious. He was so cute. Ah(still laughing)….you know this
little guy, what‘s wrong with Holland. So,….

―Welcome to Holland,‖ by Emily Kingsley (1987) is a very popular poem within
the community of children with special needs. Kingsley herself is a mother who had a
child born with Down‘s syndrome in 1974 and has since been an activist for children
with special needs. Kingsley‘s poem compares having a child with special needs to
embarking on an unexpected journey. Specifically, she describes planning a trip to Italy,

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but unexpectedly landing in Holland. She goes on to tell how the trip is not what you had
planned and you may always be sad that you didn‘t get to go to Italy, but Holland has
many wonderful things to offer as well.
Frana fully discloses that she never felt prepared for such an experience especially
when prenatal testing reassured her that Heath was going to be fine. I kept revisiting
Frana‘s statement, ―I really felt arrogant for assuming that you're going to take a healthy
child home‖. Drawing on her words, stories, and references, Frana‘s grief and self-
realization is displayed. She was grieving for the child she thought she would have, but
also beginning to make room for the one that she did. The Holland Story has particular
significance for Frana as it describes having a child with special needs as not a negative
or sad experience, just different. The story gives her hope as it portrays an equally
meaningful journey, but allows a place for loss. Frana‘s way of thinking is further
reinforced when the Dutch neonatologist confirms, ―What‘s wrong with Holland?‖ As a
neonatologist from Holland, his statement can be seen to provide symbolism that Holland
is an equally good place to be, further encouraging Frana about the mothering experience
she is just beginning.
Balancing Heath’s g-tube feedings, oral feedings, and his comfort. Heath was
discharged home eating 100% by mouth. His oral feedings and weight gain continued to
be problematic at home. Heath‘s ability to gain and maintain his weight had been a
struggle beginning in the NICU, actually being the criteria for his original discharge.
Frana: So, um, the goal was that he would be ten pounds when he was seven
weeks old. Ten pounds. We stayed there for the night. The goal was that he would
gain or keep the weight and make it to those ten pounds. But I tell you, after
weeks of having been home, we hovered over those ten pounds. And he made it,

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he slipped under the ten pounds and it was like this close (making gesture with
her fingers) to getting back into the hospital.

Heath stayed in the NICU until he was ten pounds and then he was discharged.
Frana‘s story may be interpreted as describing the beginning of their struggle with weight
for Heath which continues on today. After begin discharged from the hospital,
maintaining his weight was incredible challenging. Eventually, Heath was diagnosed
with failure to thrive combined with having aspiration pneumonia, but this time in the
summer, which was the final straw for Frana and her husband for putting in a g-tube.
Karla: Uh-huh. Tell me more about how you decided finally then to get the
G-tube in August of '07.

Frana: Ah, because we just, when he had another, you know, in the summer,
another aspiration pneumonia, you know. And, and, you know, you're touch and
go away from do I need to take him to the hospital, you know, in the middle of the
night and we're just laying there...

In this brief example, Frana situates Heath‘s atypical health or behaviors within a
more typical or normal context. The fact that Heath had gotten pneumonia during the
summer, I would suggest may have been the final deciding factor for Frana to agree to
the g-tube being inserted. Although Heath was getting aspiration pneumonia throughout
the year, according to Frana, too often to keep count, Frana found this specific pneumonia
more concerning as it occurred during the summer when typical kids are less likely to get
ill. I would suggest that Heath getting pneumonia in the summer was enough evidence to
support him getting a g-tube. Heath frequently got pneumonia, but the difference was
that he got it in the summer, which didn‘t makes sense for Frana within her knowledge of
typically mothering.

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Heath was one year, ten months when he received his g-tube. Since his g-tube
and fundoplication, Heath has continued to have difficulty with oral feeding, tolerance
issues, ―constant‖ vomiting, and illness, which translate to difficulty with weight gain. In
the story below, Frana further describes the continued rollercoaster they have experienced
with Heath‘s weight gain and how they have had the same weight goal for one year.
Frana: Yeah. September. Yeah. And he‘s been sick a lot. You know, and with
him, it gets complicated even though he‘s dealing with regular viruses, it gets
complicated because, because of the dismotility. [Karla: Uh-huh.] So, if he can‘t
eat …you know, his intake goes down…

Karla: Down…

Frana: …and he loses weight. We‘re back to 24 something pounds. I mean, he
had hit 26, I don‘t know, maybe a month ago. Well, now we‘re down to 24,-5 or
6.

Karla: Now when you say….

Frana: It is so tremendous the, the, up and down of the weight, because you can‘t,
he just can‘t eat

Frana continues with her story.

Frana: Yeah, it‘s been the goal for a year.

Karla: The goal of 26 has been a goal for a year.

Frana: So, we‘ve been going up and down, up and down, up and down, up and
down, up and down…… for a year.

Frana continues again.

Frana: I, I need to have more support. I mean, the weight loss, the weight gain,
the up and down, it‘s just, it‘s, it‘s killing me. It‘s just so hard.

Frana has many stories regarding her frustration with Heath‘s weight gain, at
times being the focus of the story and at other times laced into another story. Heath
receiving a g-tube did not seem to make it any easier for him to gain weight. Frana has

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implemented the professional recommendations of a g-tube and a fundoplication, but
with limited results. Her frustration with the weight gain is emphasized in the last
excerpt with her request for increased support as the weight gains and losses are ―killing
her‖.
Another aspiration. In many ways intricately related to Heath‘s difficulty with
weight gain are his frequent aspirations. Heath continues to have frequent aspiration
pneumonias, which for Heath causes decreased interest and ability for oral eating along
with decreased tolerance for g-tube feedings, which then causes weight loss. ―Aspiration
pneumonias‖ as Frana refers to them have become a common occurrence for Frana and
Heath. I would interpret the everydayness that Frana attributes to Heath‘s frequent
aspiration, antibiotics and lung scar tissue is at least partially rooted in how she has
become accustomed to his very frequent and serious illnesses. In the story below, Frana
calmly explains one of the ways she thinks Heath gets aspiration pneumonia.
Karla: You were talking about the aspiration.

Frana: Oh yeah. The, it's, it's pretty clear and it's most of the time we can hear it
when it happens. Because it's happened so many times we know that was it, you
know. [Karla: Ahh] Ah, the other day you know he wanted to have some hot
chocolate in the morning because that's what I drink, I don't drink coffee. I drink
hot chocolate in the morning. And he insisted, I've been giving them these little
espresso cups with you know, put that in it's easier to manage. I tell you, and sure
enough I could hear you know he started coughing, got it wrong probably in the
wrong way and started coughing and it's like ahhh, there it goes again. You know
it's another, it's another round of antibiotics in our near future because that's kind
of how you end up feeling. You know you always know where it's going to go
unless he's able to really cough it out but it's, you know, once it's in there, you
know.

In this story, Frana‘s description of the most recent time Heath may have
aspirated is remarkable. She described it in a matter of fact way that leads you to believe

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that Heath experiences this type of difficulty frequently. By her language use of ―there it
goes again‖ and ―it‘s another round of antibiotics in our future,‖ she further implies her
casualness. However, I would also suggest contributing to this feeling of everydayness is
Frana‘s limited ability to prevent him from aspirating as she feels it is essential for Heath
to participate in oral eating experiences. In the story, Frana described the strategies she
has developed that support more successful eating for Heath such as swallowing twice,
taking small bites, and a variety of cognitive strategies. However, all of her strategies
involved supporting oral intake, which further shows Frana‘s dedication to having Heath
eat by mouth.
I put my own food in his g-tube. Not surprisingly, Frana has a strong belief that
if she is going to use the g-tube, she should be putting blenderized table food through the
tube. When I was at her home for the interview, Frana showed me the multiple
containers of blended food in her refrigerator. She has two full sized refrigerators in her
kitchen. They are full of fresh cooked food that is for the family and much of it has been
modified in some way to be appropriate for Heath by mouth or by g-tube. Frana is
somewhat conflicted as the formula provides a guaranteed number of calories, but
blended food she believes is better for him, but it is much more difficult to assess the
specific caloric content. The following story demonstrates these concerns.
Frana: I think it doesn‘t make him so nauseous.

Karla: You think the pureed food does not make him as nauseous.

Frana: Yes, I think the formula and John really is very much on the formula, the
formula, because, you know, it‘s calories, you know, at least you know how many
calories he gets because he gets one calories per milliliter. With pureed food, you
don‘t really know….

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Karla: Exactly.

Frana: And, especially if you take it from, from, if you don‘t use exactly what the
dietitians tell you, and you use your home cooked food, then you don‘t really
know how…

Karla: Exactly.

Frana: I‘m not calorie counting, for me it‘s actually more important that he feels
better. And that I think he‘s getting a more balanced diet. You know he had
chicken and soup and I mean this is homemade chicken soup, you know? I mean,
how bad can that be? And then, you know, there‘s some blended up and there‘s
some carrot in it, because he doesn‘t eat the carrot. I mean, you saw these tiny
little bitsy food flecks, so there‘s some carrot in there, and then whatever extra
liquid you need to make it thin enough for the syringe. There‘s some almond milk
in it.

As Frana briefly alluded to in this story, John, her husband does not necessarily
share her viewpoint of prioritizing a balanced diet over caloric intake. In a number of
stories their conflict becomes clear and when Heath is particularly ill or losing weight,
Frana will conform by increasing formula versus her blended diet. Frana also states that
―it‘s more important how he (Heath) feels‖ in relationship to the feedings, which she
often mentions. Frana seems to be juggling Heath‘s oral feeding, g-tube feedings, and
overall comfort level in relation to those feedings. The juggling is further complicated by
poor weight gain, both blended food and formula going in the g-tube, and differing
opinions with her husband.
The emergency plan. Heath attends a private Jewish preschool where his sister
also goes to elementary school. The staff at the school has been very supportive of
Heath‘s participation and willing to be involved in his care as appropriate. The health
and safety team at the school asked Frana to put together an emergency kit, which led her
to write out a plan for Heath in case of an extreme emergency to provide for his care for

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three days. The plan resulted in a five page single spaced typed document. Frana
brought the document to our first meeting and asked me to read it before our next
meeting. Below Frana begins to tell me the context under which she wrote the plan and
how it led to doing a staff demonstration.
Frana: So I started writing and I had my first draft and handed it in. And I said
you know read through that and see if that makes sense and, and the Head of
Safety and Security also wanted me to do presentations. And literally show how
to take care of Heath and feed him with the G-tube and all of that. Um, so I did
one with him and another, umm, you know, Operations Manager and then he said
oh we've got to do this on a larger scale because you know and I said you will be
much better off if you have more people who can do this because you have 250
students here. You have other kids to take care of. You can't just get one person to
take care of him and it's too overwhelming for one person anyway.

Karla: Um-mm.

Frana: So you better and he said I want to have a whole group so then I did
another presentation for about nine people and I'm supposed to repeat it like every
three months.

Karla: Wow

Frana: So, they I mean they're really, it's pretty incredible. And you know, both
my kids they just played along. Heath sat there, I said -- I told him, you know --
yeah, we're still sitting here. So you know and Heath just sat down I mean I told
him the day before. I told him in the evening, I said, you know, after the bath
when I get him dressed, I said you know, you know this is what's going to happen
tomorrow. And remember XXXX and remember this person and, you know, and
the director from school and we're going to do, you know I'm going to have show
how to feed you with the G-tube. "Oh really‖. You know that‘s how he kind of
talks then. And, and then I said ―will you help me?‖ And, you know, he says
―yeah‖. So, and of course we do it after I pick up Joanna from school in the
afternoon so we did it twice now and Joanna helps and, and it's just been amazing.
So, both of them just play along and …

Creation of the emergency plan actually turned into a physical demonstration for
staff. Frana choose to include both Heath and Joanna in the demonstration. By choosing
to include them, Frana is conveying her importance for Heath to participate in his care

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and be comfortable with his body. He is able to help educate the caregivers he sees on a
daily basis on how to care for him. The fact that Frana and Heath were willing to
participate in such a physical demonstration speaks to how they have incorporated these
activities into their daily lives and willingness to share them publically. There were
many of these kinds of stories that Frana told to further support her desire to include
Heath in as much of his care as possible along with giving him agency in these processes.
Frana‘s story also demonstrates her desire to situate Heath within a typical
context. She has put him in a typical preschool where they are not familiar with a g-tube
or its care. However, they are familiar with Heath and his family and are willing to learn.
Frana identifies that Heath will be one of many children that need care in an emergency,
once again situating him within the general population. But on the other hand, I do think
that Frana is personally reflecting on how challenging Heath‘s care can be as she states
that it is ―too overwhelming for one person‖. Yet she is usually solely responsible for his
care. I would also suggest the process of having to demonstrate, write out a detailed plan,
and encouraging that multiple people be responsible for Heath‘s care further validates her
daily work and exhaustion.
I did read the ―Emergency Procedures‖ before our next meeting. The plan was
incredibly detailed, but what was most striking was Frana‘s ability to provide medical
information in a humanized manner. The writing style along with the tone of the
information was very consistent with whom Frana is as an individual. I actually could
hear her speaking as I read the document. Below is a portion of our discussion after I had
read the plan.

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Frana: It, I mean, it‘s serious, I mean, it‘s a, it‘s a major campus, so, umm, so if
there was something like that or an earthquake or a terrorist attack or anything,
and they, I mean, they plan in the severe case, you know, until a parent or
somebody, you know, can get there, you know, they plan for three days. [Karla:
um-mm] It doesn‘t necessarily, you know, happen that way but that‘s what they
plan for. So I thought, if our kids are stuck there, then I would want to, I would
want to have them read this and almost hear me talk, talk them through it. That‘s
how I was trying to write it down and it took me quite a while to, to get to that
because the first draft was much, much shorter. And then I realized, oh my god, I
can‘t do that. I have to explain, you have to remember this, and all the things that
were such a learn-- learning curve and such a learn process for us, you know, to
deal with the, with the tubes and how to get the syringe in there, and, you know,
we, by, by now have switched to a different tube. Now, do you know all the . …

Looking at Frana‘s explanation, the emergency plan has become part of the
journey of making sense of Heath and his needs. She embodies the process of learning
how to take care of Heath and wants to share that with others. Writing the multiple drafts
of the plan has highlighted that process of how she has had to learn to take of Heath
effectively and again recognizes its complexity. Writing the plan in a way where the staff
who is reading it, will be able to hear her ―talk them through it,‖ signifies how she will
support them even when she is not present. Along with Frana‘s desire for herself and in
this case others to feed Heath like a child versus simply performing a medical procedure.
In the middle of the section regarding medication delivery, amid multiple
directions, Frana inserts the word ―breathe‖. I have included that section below from the
emergency procedures.
This is crucial, remember that the button could clog and you will have to change
his button. JUST DO ONE STEP AT A TIME. Then close the clamp, remove
the syringe, put the other syringe with water in and open the clamp again, push
water through, close clamp, remove syringe, close feeding port (flap).
BREATHE. Do not use any of the small syringe (5 or 10 ml), they have too much
pressure and will clog the button.

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I found this section interesting as it was an example of how Frana would
momentarily change the tone and the original purpose of the emergency procedures. The
procedures were done with the specific purpose of the physical care of Heath in an
emergency, but the manner in which Frana writes them implies much more. In the
following story Frana described why she integrated comments like breathe.
Karla: I could hear you telling them what to do, especially the part where you
said, ―breathe‖.

Frana: Uh-huh. Exactly. Yes. Because, you know, it‘s stressful and especially
when you‘re doing this every day, you know? You know what can happen, even
though, though, when something like, like that yesterday was unexpected, you
know? I mean he was sitting having breakfast, he was eating Coco Puffs so
imagine, I had given him the syringe, so there were Coco Puffs in his stomach and
formula. So, I, I close up the s-, the tube, take the syringe out, was ready to put the
paper towel back in, the little plug, and the, the paper towel got wet, I mean, in no
time, I mean seconds, it didn‘t make any sense. So I look and, and, and, the flow
just kept going so eventually I just took a cup and held it underneath until I had to,
you know, grab more paper towels, wrap that around, take him on the changing
table, and put a new tube on. But, in the meantime, I had to get a new tube out of
the cabinet, so you‘re, you know, always multitasking, it‘s always, and I didn‘t
really like that word, multitasking, it‘s so overrated because, when you have to do
it all the time, it‘s not that much fun. (laughing)

I would interpret that Frana continues to find the daily care of Heath often
overwhelming and full of the unexpected. To write a plan for someone else to provide
that kind of care, is in some ways a daunting task. By using the process of writing as a
way to further validate what she does on a daily basis along with providing her the
platform to be the expert, the task becomes more reasonable and in many ways a
therapeutic experience for her. Frana incorporates herself into the plan, so that the
caregivers will not only feel her supporting them while they care for her son, but also
provide the care in a manner that she is comfortable with in an emergency.

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Chapter 5: The G-Tube: A Mother’s Blessing and Curse
In Chapter 5, I will discuss the rewards and disappointments mothers associated
with a g-tube placement. At times, these rewards and disappointments were clearly
observable and at other times were woven into everyday stories of mothering. The
mothers‘ perceptions of the benefits and problems associated with the g-tubes were at
least partially associated with the context of when the g-tubes were inserted. The
children in my study received their g-tubes for a range of reasons. The g-tubes were
inserted at different periods in the children‘s lives depending on the course of their
illnesses. Two of the children received their g-tubes at birth before they were discharged
from the hospital while the others received them months to years after discharge. The
context of when the child received their g-tubes influenced the mother‘s perceived role in
the decision making process and how mothers made sense of the g-tube in their own lives
as well as their children‘s.
The G-tube Goes in at Birth
There is limited literature exploring how the timing of the when the g-tube is
inserted shapes mothers‘ ideas about their role in the process along with associated
implications (Spalding & McKeever, 1998; Thorne, Radford, & McCormick, 1997).
However, I believe the topic is important to consider as it shaped mothers‘ perceptions of
the g-tube and their mothering abilities. Thorne et. al. (1997) did a qualitative study with
a combination of mothers and nurses examining the multiple meanings of the g-tube. As
part of Thorne‘s findings, she directly addressed circumstances for when a g-tube may be
recommended such as life threatening illness, prematurity, traumatic injury, or long
standing or progressive illness and how that influences a parent‘s ideas around the

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original insertion. For example, when children have a life threatening complication, a g-
tube may be more readily received as it is simply part of the child‘s complex treatment
plan. However, if the g-tube is recommended as a result of a long standing illness,
mothers may be more resistant as it represents further loss of normalcy and a mother‘s
ability to feed her child. While my data would agree at some level with Thorne‘s
findings, I would suggest these categorical differences continue to impact a mother
beyond the initial insertion of the g-tube.
Sophia and Nellie‘s children both received their g-tubes relatively soon after birth
in their initial hospital stay. They received their g-tubes under similar circumstances as
both children were born with conditions where the g-tube was allegedly necessary for
survival. Sophia and Nellie similarly expressed no choice in their children receiving g-
tubes. The g-tube was in exchange for their child‘s life. In the story below, Sophia
describes her response to the g-tube being inserted.
Karla: How about the decision, or how did you come to understand or decide that
you were going to have to put in a G-tube?

Sophia: Well, the doctors told me that‘s the only way……. for him to eat, you
know. I was like, ‗oh my goodness‘, you know. The trach, the G-tube, is that
really necessary, but say well, if you want to really take him home that‘s the only
way you can take him home because he – he will not be able to eat, you know, so
what you – what you going do? If he‘s not going to eat then he‘s going to die. So,
we just, you know, decided, you know.

Karla: So, was there a choice?

Sophia: Yeah, yeah, exactly. There was no choice. They said either that or he will
die, so there was – there was – for me there was no choice to get him really.

Sophia was told Erek would die within the first year of his life irrelevant of the g-
tube placement. He also had a tracheostomy and was on a ventilator at home for the first

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year of his life. Erek‘s doctors recommended that he be put in an institution versus being
taking home by Sophia. As can be interpreted from her story, Sophia momentarily
questions whether all the medical intervention is really necessary for her newborn,
grouping the tracheostomy and the g-tube together within the larger context of his illness.
However, Sophia‘s primary goal is to take Erek home from the hospital, so she will do
what is necessary.
Nellie actually recollects her learning of Mark receiving his g-tube and
tracheostomy through a phone call from the NICU. Both were inserted during an
emergency medical procedure and she was unaware that the g-tube was going to be
inserted. Nellie tells the story below of when she learned that Mark had a g-tube.
Nellie: Mmmm, we were crying, we were upset, because, umm you know as an
Asian culture, if you have to put something inside the body, it is something that
really strange and we felt that oh, what we going to do, how are we going to take
care of the baby after we came, after we have to take the baby back and then all
kind of question coming in, umm, and then, during that time, from the first
operation, he has the, umm, he has, he has to put the, the a oxygen tube in his
mouth

Karla: Ok

Nellie: At that time, he had, he didn‘t have a trach tube, the green tube, so they
have to put aaaa a ―occlude‖ the, the tube from his mouth, but because of the
severe acid reflux, it burns his, his esophagus and it couldn‘t take the tube out,
and we, we have to wait like about, the doctor decide to put the, the, the tube, the
breathing tube, inside for a week to wait for the acid reflux to wind down and then
to wait for the esophagus to heal it, after a week I got a emergency call, early
6:00, say that , that they have to an emergency surgery, because they couldn‘t take
it out and they could not put it inside, so after about 10:00 we went to the hospital,
um we saw he has a trach, and then he has a g-tube, so um

Karla: Wow, what was that

Nellie: It kind of a scary,

Karla: Yeh, what was that like for you

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Nellie: Umm, very horrible, umm, it was like, I, I can remember the feeling it was
so awful, I can‘t recognize my son, and then he was like a month old in the NICU
and then he hanging all kinds of things hanging.

Nellie situates Mark receiving his g-tube in a very complicated context of what
the g-tube means for Nellie as a mother in part of her Asian culture. Her story conveys
the element of the g-tube and tracheostomy being a surprise, which undoubtedly
impacted her initial response and acceptance. However, the disruption in body integrity
by the g-tube and cultural unfamiliarity with such interventions would arguably have
been present at any point. The unexpectedness of the procedures did not allow Nellie
anytime to personally explore what these invasions meant for her as a mother. Instead,
the grief and concerns about being able to care for such a child evolved into a social
worker and herself questioning whether she should take Mark home from the hospital.
Nellie and Sophia‘s stories suggest the g-tube was interpreted as a life sustaining
procedure. Neither mother perceives that it was a decision that they were a part of, but
rather what needed to happen. The circumstances that both Erek and Mark received their
g-tubes were complicated by the fact that both children also received tracheostomies at
the same time. The experiences cannot be separated and needs to be taken into
consideration when examining their complicated medical beginning, including the
recommendation for both of these children to not necessarily go home with their mothers.
Nellie and Sophia‘s children received their g-tubes under somewhat similar
circumstances, but quite differently than the rest of the children in the study.
Noticeably absent in Nellie‘s and Sophia‘s interviews, as compared to the other
mothers, were stories around indecision regarding the g-tube, second guessing the

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insertion, and the guilt associated with those processes which were conveyed through
numerous stories told by the other mothers. I would suggest the lack of second guessing
the placement and indecision was due to the mother‘s belief that they were not a part of
the decision making process, but rather it happened as part of the early life saving
procedures. Both mothers in their stories are heard to group the tracheostomy with the g-
tube, which provided their children the ability to breathe and receive nutrition.
The context of when the children received their g-tubes also shaped the mother‘s
reported benefits and disappointments. Sophia and Nellie described the basic loss of not
being able to feed their child, but did not describe other challenges associated with the g-
tubes. They both primarily saw benefits of the g-tube or were more neutral. Nellie‘s son
did continue to have significant tolerance issues similar to other children in the study, but
she didn‘t frame it as a difficulty, but rather an opportunity for engagement with Mark
when he was receiving his extended feedings which will be discussed in a later chapter.
According to Thorne et. al.‘s (1997), Nellie and Sophia‘s children would fit most
closely into her category of life threatening illness albeit immediately at birth. However,
they differed as neither mothers described the g-tube as a decision and they were
significantly distressed by the placement. Thorne suggested mothers in this category may
more readily accept the g-tube as it was interpreted as a life saving device. The g-tube
was just as traumatic for Nellie and Sophia, but in a different way. The placement was a
part of a larger medical discourse that was occurring at the time rather than an isolated
surgery that was only about a g-tube insertion.
The rest of the mothers in my study fell more solidly in the categories more often
represented in Thorne‘s (1997) and other g-tube literature (Craig & Scambler, 2005;

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Sleigh, 2005; Spalding & McKeever, 1998). The children received their g-tubes as the
result of an illness or diagnosis that would interfere with their ability to eat. The mothers
all had a period of time where the g-tube was contemplated and often their calorie
supplementation had already started with either an NG tube or TPN. The mothers
reported having some role in the decision making process along with a variety of gains
and losses as a result of the g-tube placement. All of the mothers were originally
resistant to placement of the g-tube, which would also be similar to Thorne‘s findings.
The Blessings of a G-Tube
All of the mothers in my study expressed some kind of benefit from the g-tube,
including Nellie and Sophia, which is consistent with the literature. Smith et al. (1999)
reported that 86% of the caregivers in their study reported a positive impact on their lives
and Guerriere et al. (2003) reported that 100% of the mothers in her study reported a least
one gain from the g-tube placement. With regards to the results from my study, the g-
tube provided benefits that were obvious as well as what I would call hidden blessings.
The mothers described the initial gains as ―relief‖ and a ―weight being lifted‖ in response
to the g-tube being placed, which is similar to what is reported in the literature (Craig &
Scambler, 2005; Guerriere, et al., 2003; Smith, et al., 1999; Thorne, Radford, &
McCormick, 1997; Townsley & Robinson, 2000). In my work and the literature, the
initial placement at times was dramatic and often discussed explicitly as part of the initial
exchange when the g-tube was inserted. The hidden blessings were often revealed more
subtly through stories surrounding everyday occupations, which were not explicitly
discussed in the literature. Brotherson (1995) did refer to unexpected gains in her work.
However, the gains were most often associated with the child‘s physical presentation.

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The hidden blessing as I will describe were different. Through a story, the mothers
would integrate an important aspect of the g-tube that was beneficial for the mother or
child. The act of telling the story would produce the blessing attributed to the g-tube and
at times, mothers almost appeared surprised by its disclosure, as Frana said, ―well, I guess
it (g-tube) is a blessing, too‖.
I was struck by the number of stories that began with a different purpose, but
through the story telling, an everyday kind of blessing was revealed. The benefits for the
mothers were highly variable and at times related back to the original placement. The
benefits ranged from increased control over nutrition, ease of administering supplements
and medication, decreased stress on child to eat in public situations, and visual
appearance of normalcy.
In the next story, Pam is telling me about their family breakfast meal and how that
includes Isaiah‘s waffles by mouth and a combination of formula and supplements by g-
tube. As she is telling the story, Pam appears to realize that the supplements she gives
Isaiah she is not able to give her other three children and she proclaims the tube as a
blessing. Isaiah also has a number of allergies, so the g-tube also serves as an easy port
for medication administration when needed.
Pam: Yeah, yeah. Oh gosh, yeah. Now it‘s one of those with our eyes closed kind
of things. It, um, most of the time we just, it, there‘s a bag, you know and it‘s got
measurements on it. We fill it up with a certain amount of water, about five or six
scoops of his milk. Um, I like to add things in there like, um, cod liver oil.
Supplements that are really good for kids but really difficult to get them to take,
that's one of the benefits now of a G-tube, I can put anything in there that I want.
(laughing) You know, things my other kids won‘t go near. Um, he, his doctor
wants him supplemented with some extra vitamin D so that‘s easy to get in there.
Uh, if he has allergic reactions, it‘s real easy to get Benadryl to him. I can put that
in and then you know, as it drips he just kind of goes to sleep and feels better.

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Um, but typically it‘s-it‘s his milk and water and maybe some oil and, um, and
you know it‘s, we mix it up. We, we hang it up.

In the next story, Nellie begins to tell me a story about when she went out to a
restaurant with her friend and her friend‘s daughter. Nellie realizes that she can give
Mark food for him to ―pick at‖ without having to worry about what he eats in this social
setting. She feels fortunate that she can control his nutrition. Nellie talks about how the
g-tube has taken away some of the social burden of having Mark eat as she can wait for
him to choose how he will participate in the food.
Nellie: In what way, I don‘t really know because Mark is the first son. The first
child, so when compared with ideal families, umm, it, its (Mark vocalizations-
talking to Mark) Yes, oh, you have a DVD (done), I think we have a different
experience when compared with, um, other normal kids family. Umm, in terms
of that I don‘t have the burden to, umm, you know, it‘s really hard to explain,
like, like for example, like one of my friends, her, her daughter like about, almost
2 years old, she is able to eat, she is able to nibble, but for Mark he, he is very
picky about what he is eating. So, that, whenever we take him out, I, I will not
force him, but instead he will initiate like, I will have to sit, sit, He will initiate it
and then he will eat it by himself also, but when compared with other family they
will say ok, they will say, they will say, oh, I am going to order this for you, you
will have to finish it, so it is totally different. I don‘t know when compared to
American culture, if that is the way or not, but………

These two short stories are different examples of how mothers are viewing the g-
tube as a blessing that maybe was unrealized initially. Pam is able to provide Isaiah with
the needed medication and additional supplements that she is unable to do with her other
children who don‘t have g-tubes. Nellie is able to have her son participate in social meals
without the stress of making sure that he eats as she reports her other friends have to do
with their children. The g-tube has enabled daily routines and occupations for mothers in
a way that they did not anticipate providing positive outcomes associated with the g-tube.

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Mixed Blessings
Within the stories that mothers told, the child‘s g-tube was most often presented
as yielding mixed blessings. In the literature, the g-tube was also often associated with
both gains and losses (Brotherson, et al., 1995; Guerriere, et al., 2003; Spalding &
McKeever, 1998). Guerriere et al. (2003) laid out the gains and losses as described by
the mothers in her study. Examples of some of her gains were improved weight,
nutrition, development, and overall health. She described possible losses as discomfort
associated with surgical procedure of the g-tube insertion, loss of oral eating, and
increased abnormality signified by the g-tube. Although the findings from my study
would support both gains and losses, they were not clearly separated as described in
Guerriere. The stories mothers told often contained the benefits and the disappointments
all within the same story, making them almost inseparable. The intertwined presentation
further highlights the complexity of a g-tube within that child‘s and mother‘s life.
Heather‘s story provides a good example of the mixed blessing of the g-tube.
She is able to describe her great disappointment that Anna has not gained weight as
promised, but is incredibly happy regarding her overall developmental gains that she
attributes to the g-tube placement.
Heather: Umm, but it took -- it took about six months (to give up on weight
gain). Because I -- two months after the G-tube was placed, and not kidding, two
months after the G-tube was placed, she had still not even gained a half of a
pound. One half of a pound. Umm, that's when I, you know, started on this quest
of, maybe I made a mistake with the G-tube. Maybe -- maybe she has a genetic
condition that makes her small. What if I did -- what if I made a big mistake?
And, I started with the what-if's. Well, even if I made a big mistake, immediately
after putting in the G-tube, within a month -- not even, within two weeks, she
caught up developmentally. It was -- it was like amazing miracle.

Karla: Wow.

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Heather: She started crawling. She started -- she started doing everything that she
was supposed to be doing immediately after. So, I never -- I didn't regret putting
in the G-tube, except for her size. Because everyone just guaranteed me, once you
put that in, you're going to have a normal-sized baby.

Karla: Um-mm

Heather: Umm, and two months later, you know, I went back to the doctors and I
said, where's my normal baby? She -- you told me in two months she was going
to gain like, seven pounds. And she was going to catch up on the growth chart,
and she still hasn't. When am I going to see my normal -- when am I going to see
the results of putting this G-tube in? And they just said, keep giving it time. ―You
have to give it more time. You have to give it more time.‖ And that's when I set
out on my quest of, maybe this is not -- maybe this is hormonal. Uh, and I took
her to an endocrinologist. And we got nowhere. Everything -- all her results came
back normal. Umm, we took her -- you know, we checked all her hormone levels.
I took her to a metabolic doctor. Everything came back normal. Umm, and then
last week, I just took her to a geneticist and they said there's nothing genetic. Your
baby is just small and it's solely based on her caloric intake.

In Heather‘s story, the gains and losses can‘t be separated as she would not be
able to tell a cohesive story about the g-tubes role in their life. Heather struggles with
wanting a normal sized baby and is very upset the g-tube wasn‘t the answer to supporting
Anna‘s growth. I would suggest Heather was using the g-tube as a means to support
Anna being a more normal baby, but now she still has an abnormally small baby and also
added an abnormal way to feed her. Heather is so uncomfortable with the g-tube and the
social ramifications that she has kept it a secret from her family and friends. However,
despite all that, she is still able to internally justify her decision as Anna did make
significant gains developmentally after the g-tube placement. However, the gains were
not good enough for Heather as her story explains. The g-tube wasn‘t the answer to
Anna‘s improved weight gain, which was ―guaranteed‖. Anna can be heard to vacillate
as to whether she made the right decision for Anna by consenting to the g-tube.

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Pam‘s story provides another good example of the mixed blessings of a g-tube for
her and Isaiah. Pam‘s son Isaiah, had initially been provided oral supplementation in
order to allow the ulcer in his esophagus to heal and further clarify his multiple allergies.
Pam initially thought the NG tube was a good choice for them because she assumed he
would only require the NG tube for 1-2 months. However, Isaiah did not become
interested in eating again even after the ulcer had healed. The story below describes
Pam‘s decision to put in the g-tube and her perceived benefits and initial concerns.
Pam: I think it was because at that point………… the tube in his nose had been
pulled out so many times, and there‘s times like it‘d be 2 in the morning, 3 in the
morning, four in the morning and to try to get to the emergency room wait there
for four hours. It was just, it was just too much and his doctor said, he said, he
said, the G tube requires surgery but it‘s a whole different ballgame.

Karla: Um-mm

Pam: If that comes out, it‘s much easier. You know, basically he said you put it
back in. Twice I tried to put that nose thing back in and both times I made his
nose bleed. It was just way too traumatic… for both of us. Um, but the G tube‘s a
breeze, it‘s come out a million times and it‘s just no problem putting it back in.
And it just gave him mobility. You know, when he had the nose tube we had to be
careful how we picked him up, that the tube wouldn‘t get like caught on
something [Karla: Um-mm] And then pull itself out. [Karla: Um-mm] Or we had
to keep him with these arm guards so he couldn‘t reach up and pull and it was
just, no, no good for him. And um, it made him look sick, you know? [Karla: Um-
mm] Whenever people, oh, what‘s wrong with your baby? People now, they nev-,
unless I tell them, I mean he goes to like the (typical toddler class) and the (baby
gym class) and all that, they have no, and no one there has a clue that has this in
his stomach. And, you know, there‘s no hindrance to him. That thing‘s totally
different. So, even though it required surgery, just overall it‘s much better.

Pam and Isaiah received multiple initial gains from putting in the g-tube. I would
interpret from this story and her individual story that a greater sense of normalcy was the
benefit of Isaiah‘s g-tube. Isaiah no longer looked sick and was given back the typical
physical mobility for a child his age. Pam was primarily using the emergency room or

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her physician to reinsert the NG, which frequently came out. The g-tube, she is able to
manage on her own without regular medical intervention, which further supports her
mothering abilities. Pam‘s story implies that once she realized Isaiah was not going to be
able to sustain himself through oral eating, the g-tube was a good alternative to the NG
tube for her and Isaiah. However, she begins and ends her story with her concerns about
putting Isaiah through another surgical procedure. The idea of discomfort and risk of
surgery for a g-tube placement was a significant concern as presented by Guerriere
(2003) for mothers. Pam‘s concerns can be seen as similar, but when presented in the
context of her story seems small versus the multiple benefits expressed. However, her
surgical concerns delayed Pam‘s consenting to Isaiah‘s g-tube placement.
This story demonstrates the mixed blessings of the g-tube for the mothers in my
study. All the mothers expressed different blessing and disappointments based on their
needs and child‘s situation. The story also alluded to how the g-tube‘s impact evolves
over time with different meaning in different contexts, which is not addressed in the
literature. Pam had refused the g-tube for Isaiah more than one time as she felt the risks
associated with surgery outweighed the benefits. However, in the story that I shared,
Pam expressed many benefits of the g-tube once she had become comfortable with the g-
tube care, but still told us of her initial concern.
Unrealized Promises
While the benefits and mixed blessings have been addressed, another important
related theme was the many complications or the promised rewards of the g-tube that
were never received. Often g-tubes were inserted under complicated circumstances,
where mothers felt they were promised such things as increased weight gain and health

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for their children. However, some children continued to struggle with similar challenges
after the g-tube was placed. Five out of seven of the mothers interviewed continued to
report struggles with weight gain. Five out of seven mothers also continued to express
significant concerns regarding their child‘s vomiting and tolerance of g-tube formulas.
The continued struggle provided conflict and frustration for mothers. A very difficult
decision had been made, but the entirety of the original problem had not been fixed or a
new problem had arisen. The struggle set the stage for feelings of betrayal, frustration,
and once again feelings of failure as a mother.
The story that was shared regarding the mixed blessings of Micah‘s g-tube
demonstrates the overall increased work initially for Akemi. She now was managing the
g-tube feedings and the TPN. Once he transitioned to 100% g-tube feedings his tolerance
of the feedings was poor, so formula had to be put in the tube at an extremely slow rate,
which then created difficulty with weight gain, which wasn‘t a challenge before. The
new work that Akemi must now put into the g-tube feedings can be heard in the story
below.
Karla: And so then when you came home, how did he tolerate the G-tube feeds?
Tell me more about what that was like.

Akemi: Oh, it was a big struggle, like, we had to find exactly how much he could
tolerate, the amount of milk, meaning, let‘s say, if it was 10 cc more, then he
would throw up. Or then the rate, because we tried to, in the real life, you know,
when you‘re not in a hospital, you can't just run milk like 30 cc, I mean three
hours, over three hours or something like that, you know. It‘s not practical.

Karla: Mm-hmm.

Akemi: Yeah. So, I actually was kind of pushing, like to the rate like as fast as he
could tolerate, you know, and kind of stay there. So, the part about figuring out
like what would be the best amount and the rate was kind of tricky. And
sometimes when, let‘s say he was fine with this amount and this rate, and then the

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next feeding, he wasn‘t, you know, something like that. That caused a lot of
frustration and every time he threw up, I felt like I hurt him, like, oh, maybe I
pushed him too much. Maybe we set it too fast and the amount was too much.
And like I said, every time he threw up, it was like a loss-loss situation because
not only what he just got in came out, it was like something else that was in there
too. And then, I calculate in my head how much liquid he got.

Karla: So, you said it was a loss-loss because he‘d lose the calories and what was
the second thing?

Akemi: The liquid intake because he only has one kidney and that‘s always in the
back of my mind. I always, always calculate in my head like, okay, he drank these
two ounces. Like, I don‘t, we don‘t want him to lose that last kidney, you know.
Being on dialysis probably is the last thing I want (gasp/laugh) -- it's, yeah.

Akemi describes the process of managing Micah‘s g-tube down to 10 cc, which
is 1/3 of an ounce. She also has to further monitor his weight gain, which was not a
problem previously along with being concerned about his hydration as his tolerance is so
poor. Akemi had become competent and familiar with the TPN feedings. However, the
g-tube feedings had questioned her competency as a mother. Akemi is not able to
manage his feedings and actually questions if she is hurting him through the feeding
process. I interpret the g-tube insertion had created new challenges for Micah, which in
turn contributed to increased feelings of inadequacy by Akemi. As his mother, she is
supposed to be able to manage his new feeding method and not yet been successful.
Before Anna received her g-tube, Heather was putting in an incredible effort in an
attempt to support Anna‘s caloric intake. Heather‘s disappointment and frustration can
be understood when after Anna receives her g-tube, work of the oral feedings is simply
replaced by g-tube feedings. In addition, Anna stops all feedings by mouth, which is also
a significant loss for Heather. In this story, Heather describes how she feels that she and
Anna are a ―prisoner in their own home‖ as feeding still controls their entire day even

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with the g-tube. Heather feels betrayed by the medical community as they assured her
the g-tube was necessary for Anna‘s growth and parts of her struggle would be over.
Heather: Yeah. Not that it was going to fix her reflux, we were warned that a G
tube won't fix reflux. In fact they said sometimes G tubes aggravate reflux, but I
thought it was going to fix her size. That's what they guaranteed me. Just wait.
You won't have to struggle with her weight anymore. Put in that tube and you
won't have to worry anymore about her not gaining weight and her -- your
frustrations, you know, with she only gained an ounce in the last month, you
know. Once you put in that G tube, you're going to have one less worry.

Karla: And it just didn't do that.

Heather: No.

Karla: That's sort of not fair.

Heather: It isn't and that's, you know, we had mentioned once before that I can't
help but question should I have put in -- should have I done the G tube because
prior to the G tube, she did eat everything by mouth. It wasn't enough. And I
know in my heart she needed the G tube, but you still never -- you still are never
fully okay with the decisions that you have to make and you're always questioning
did I make the right decision. You know, even something as minuscule as did I do
the right -- if I hadn't given her that extra five cc's, would she have not barfed? I
pushed her too much. You question should I give her this extra amount? Should I
try to get in an extra feeding? Should I -- what rate -- what rate do I put the milk
on at night? Everything is always a question. Well, last night, she didn't vomit,
but what if I put it at the same rate and tonight she vomits. Does that mean she's
going to vomit every night at this rate. You question everything.

Heather can be heard having some similar concerns as Akemi. She is questioning
Anna‘s feeding down to 5ccs. The g-tube was supposed to eliminate this struggle and
reduce the difficulty of feeding and weight gain. Because it was not successful, Heather
questions whether she truly made the right decision for Anna. Heather is uncertain about
her ability to mother Anna, specifically related to her feeding. She is outwardly
questioning every small thing she does with regards to Anna‘s feeding.

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The blessings and curse of a g-tube emphasizes the effort and time that goes into
decision making and overall care for a child with a g-tube. The stories repeatedly show
that receiving the g-tube was a very difficult decision or event in all of the mothers‘ and
children‘s medical journeys which is a finding that is also described in the literature
(Craig & Scambler, 2005; Guerriere, et al., 2003; Townsley & Robinson, 2000). Further
complicating the process is the circumstance under which the g-tube was inserted and its
impact on those benefits and complications. My findings validate the exhaustive work
mothers must do on daily basis to care for their child and how that care is not necessarily
made easier with the insertion of a g-tube. G-tubes and related occupations are highly
individualized for mothers and children. Their meaning and influence on daily life is
variable through the child‘s life of health and illness. The findings support an
individualized approach for mother‘s to adapt, individualize, and modify the child‘s care
as to better suit their day to day occupations to create possibilities for hidden blessings.

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Chapter 6: Mothering Work: Creating Opportunities for Occupation and Agency
through the Technicalities and Care of a Child with a G-tube
In the following chapter, I will explore how the mothers in my study expressed
the rewards of caring for their child with a g-tube. The perceived rewards of caring for
their children with special needs laid the foundation for the emergence of a forced but
expansion of their embodiment of mothering occupations. A mother‘s ability to find
meaningful occupation in the daily care of her child with a g-tube further supported the
emergence of medicalized mothering, a concept that is developed below.
Medicalized Mothering
As discussed within the literature review, an increasing number of children with
chronic illness and technology dependency are being cared for in the home (Coffey,
2006; Nelson, 2002; Ratliffe, et al., 2002). These mothers are forging the way for a new
type of mothering that has not been adequately described in the literature. All of the
children in my study had varying levels of special heath care needs. The mothers needed
to take on new occupations that often were medical in nature whether it revolved around
caring for equipment such as the g-tube or trach, advocating for their children in the
medical world, managing their children‘s health care needs or assuming unfamiliar
medical practices for their children. Some mothers apparently assumed the role
immediately and smoothly, while others initially expressed self-doubt as to whether they
were capable of care of such a child. All of the mothers described how they relatively
quickly knew they had to provide the care their child needed no matter how foreign or
challenging it appeared to be. Eventually all the mothers seemingly embraced their new
responsibilities within the scope of their mothering occupations.

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Pam‘s son, Isaiah transitioned to his g-tube from an NG tube. When he had the
NG tube, Pam took him to the emergency room to have it reinserted when it came out
versus reinserting it herself. However, once Isaiah received the g-tube, his
gastrointestinal doctor quickly pointed out that Pam needed to be responsible for all of
the care for the g-tube including reinserting the button when it came out. Isaiah‘s
physician made Pam learn how to put the Mickey button back in and gave her the training
and confidence that she was the best suited to be able to reinsert the tube.
Pam:….that I knew how to do it. That was just not cool, you know? I mean, I just.
I just don‘t want to do that (referring to putting the button back in). But it wasn‘t
difficult. Um, He said (the physician), he said, it was important to learn it, he said,
because, which I thought was interesting, he said, most times, to go to an
emergency room, he said, I guarantee you, the people there won‘t know how to do
it. He said, it‘s very uncommon for someone to show up at the emergency room
with a G tube that needs to be put back in. He said, so you have to be prepared
that you will be doing it at home. He said, because just every day doctors and
nurses are not trained to be doing, to be doing G tubes. And I‘m thinking, then
why can I do it? It seems like, that doesn‘t seem right, but OK. And he was saying
too, you know, if you‘re on a plane, and let‘s say the plane is delayed and you‘re
on the tarmac or something, you‘re not going to get to the emergency room. He‘s
like, you have to be able to put this thing in no matter where you are. And so that
made sense to me. [Karla: um-mm] Umm, And it wasn‘t, it wasn‘t difficult, so the
first time was really scary. I was, I was freaked out because the sitter was freaked
out and I didn‘t know what to expect. And, in the doctor‘s office, when I did it, it
went right back in. This time it was not going in (at home) and I was trying to
work it around and he‘s screaming and I don‘t know if it‘s fear or he‘s really
hurting, I‘m hurting him. It was, the first time was very traumatic. Just not cool.

Pam initially was uncomfortable and resistant to reinserting Isaiah‘s g-tube. She
also questions if doctors and nurses are not trained to reinsert a g-tube then how she can
be qualified. She was concerned if she was doing it correctly or whether she was actually
hurting her son.
Pam‘s story is a good example of how some mothers were initially wary of certain
aspects of their children‘s care but eventually embraced the responsibilities. Currently,

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Pam feels that she or her husband are the only people qualified to reinsert Isaiah‘s g-tube,
so one of them always needs to be within one to two hours of him in case of an
emergency. This story begins to demonstrate how mothers move into the position of
being the medical expert on their children, in this case even having more skill than
medical professionals. In this particular story, I would interpret that Pam was initially
convinced by the physician of her need to participate in unfamiliar aspects of Isaiah‘s
care. However, in some of Pam‘s other stories along with other mothers‘ stories, women
can actually be seen to seek out these kinds of caring opportunities to be able to more
completely mother their children.
Through these kinds of experiences, a new dimension of mothering emerged,
medicalized mothering, as mothers participated in the familiar and unfamiliar
occupations of caring for their child with a g-tube. Medicalized mothering was a
prominent theme in all of the mothers‘ stories. The terminology of medicialized
mothering has been used in the literature (Coffey, 2006; Hatton, Canam, Thorne, &
Hughes, 1995; Litt, 2000). However, how I am using it within the context of this study,
would suggest a different meaning. Litt (2000) and Apple (1981) described the
emergence of medicalized mothering through their work. Apple actually discussed the
social history of feeding, mothering, and medicine (1981). She describes the social
practices that have occurred to further medicalize the process of feeding and caring for
your child outside of the area of medical fragility. Litt‘s work discusses two specific
cultures of women more specifically describing medicalized mothering as a construction
of society and cultural influences during a specific time period.

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While Apple and Litt‘s work are both helpful to further situate the idea of
medicalized mothering, the theme that emerged through my research would more
accurately be thought of as a means to mother that was created through the negotiation of
daily mothering occupations to care for a child with chronic illness. In the works that I
have highlighted, a medicalized mother was described more as a socio-cultural context
that women were mothering within. The expertise was moved from the mother to the
medical community, providing a different landscape for the typical mother to negotiate
mothering occupations surrounding feeding and nutrition.
My research would suggest that mothers themselves are instrumental in driving
the creation of the medicalized mother. The occupational impact of caring for a child
with chronic illness with g-tubes, forced the mothers in my study to become their own
child‘s medical expert and at times even an expert to other mothers. Sophia‘s story of
weaning her son off the ventilator provides a good illustration. Sophia is confident that
she could wean her son off the ventilator once he comes home from the long term care
facility. I would suggest she describes that having him on a ventilator interferes with
their ability to participate in daily occupations because of the level of care he requires
when on the ventilator.
Sophia: Oh, yes, of course, of course. And you know, and I said when they – they
um, – they let me take him home. And I was saying, you know what – and I make
promise to him and say ‗I will take you off the ventilator, no whether – when or
how, but I will – I will take you off. (slaps her hands together in emphasis)

Karla: You told Erek that?

Sophia: Yes, yes, I did. I said even if you twenty years old you‘ll be off the, you
know – I don‘t know when he would get off the ventilator, you know.

Karla: You want to get him off.

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Sophia: And I actually did by myself but I was trying to get him off, like one
minute, two minutes, you know. You know. Every day one more minute, one
more minute. And, and then he got off. So that was really, really, really good.

Karla: And when did you tell him you‘d take him off the ventilator? When you
were –

Sophia: As soon as I took him home. (both laughing lightly) After six months I
said ‗you know what, I‘m going to take you off that ventilator‘, you know. Trach I
can handle it. You can go everywhere, you know. And if you have to have a trach
for the rest of your life, like that, you know, that‘s fine. But the – with the – with
the ventilator you cannot go anywhere, you know. And the doctors were really –
not really, um, positive they say he probably have to stay on the ventilator for rest
of his life. I say ‗oh no, he‘s not‘. (laughing with emphasis) I‘m taking him off the
ventilator, you know. Yeah, they didn‘t give really a good prognosis for him when
he was born. They say, you know, he will die in first year, you know.

Karla: They told you he would die in the first year?

Sophia: Oh, yeah, oh, yeah, if I take him home. Correct. But, I proved them
wrong, (quick laughter) I guess. (Erek is pounding toys loudly in the background)

Karla: Wow.

Sophia: Yeah, yeah. They say that will be – he will not understand a lot, and, you
know, he not – and he‘s fine. He‘s acting like an almost three years old, and he‘s
older. The only thing that is wrong that his muscles are really weak, but he‘s
making progress, he is, you know. And they‘re very optimistic that he will walk
and will have a full, you know, he will not, probably not a baseball player or a
football player, but he will, you know, he will walk and he will have a normal life.

Sophia‘s story is complex in its meaning. From the very beginning Erek was
given very limited hope of survival and if Sophia took him home, she was reassured he
would die within the first year. Sophia needed to take Erek home to assume her
mothering responsibilities in whatever way she could. As soon as she was allowed to
have hope that Erek may survive, Sophia began to mother Erek in familiar and unfamiliar
ways. She had the confidence to assert that Erek could be weaned off his ventilator and
promised him that she would do it. Sophia describes that she can incorporate certain

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aspects of Erek‘s care into their daily occupations, but being on the ventilator is too
limiting. It restricts their mobility and participation in occupation. Sophia becomes the
medical expert for Erek. She provides care for him in ways that are unfamiliar for the
typical mother, but required if she wants to be an active part of Erek‘s daily care. The
medical professions had told Sophia that she was not capable of providing care for her
son, but she began to prove them wrong as soon as she was allowed to mother him.
Through the occupations and interactions surrounding the daily care of their
children, mothers are driving the concept of medicalized mothering which is different
than the overall social construction of the medicalization of motherhood. The ideas are
not necessarily contradictory, but possibly complement each other. Litt‘s description of
medicalized motherhood may even be thought of as providing the platform for the
mothers in my study to be able to construct their own ideas and occupations associated
with each of their individualized mothering experiences in relation to management of
medical needs and procedures.
The idea of medicalized mothering can be explored through stories from all the
mothers in my study. Heather‘s story is particularly interesting as it merges the worlds of
motherhood and medicine in words and actions to allow Heather to bring her baby home
with an NG tube versus a g-tube. The medical profession thought it was necessary for
Anna to have a g-tube to go home from the hospital and for Heather to assume mothering
responsibilities, but Heather was not yet ready to consent to a g-tube for Anna. Through
the story, Heather has already begun to embody the medical world as she recognizes that
adopting medical expertise is necessary to become a mother of a child with special needs.

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In Heather‘s story, I would suggest that her language and daily practices shift among
mothering and medicalized mothering depending on the situation.
Heather: So, I had to, you know, I had to prove that, umm, I knew how to take
care of a baby with special needs. I guess an NG tube was considered special
needs, especially when you have oxygen that's, you know, in there also. And, you
know, you -- it -- I don't know what other way to say it, job interview. I mean, he
asked questions and I, you know, answered. And, you know, I had to give my,
you know -- I brought in that I have some of a medical background.

Karla: Um-mm

Heather: I have -- my undergrad degree was in healthcare management. But I
never got to use any of it. But -- you know, I can -- I can do medical stuff.

Karla: If you need to.

Heather: You know, they gave me a stethoscope. And I had to check, you know,
to make sure that every time her tube was actually in her stomach, umm -- and
then the second part of the interview was, I was the one that offered, let me fully
take care of her for 12, 24 hours. Whatever you want, and I'll show you that I can
do this. It was kind of like, I'm ready to be a mom, you know?

Karla: Huh-huh

Heather: Because, when they're in the NICU, there's only so much you can do.
You know, the nurses are there to take care of your baby. No matter how much
you want to, you can't really fully take care of your baby by yourself. So, it was
like, it was a job interview of,…… I can be a mom now.

Heather describes the ―job interview‖ that she must participate in to become a
mother because Anna has ―special needs‖. Heather describes the specific medical
procedures that she must learn and demonstrate to convey competency to be a mom,
which is not typically how we might think of a woman‘s transition into motherhood.
Heather even found a way to assume unfamiliar occupations within the context of the
NICU by requesting that they allow her to fully care for her own child, a clear
intersection of familiar and unfamiliar mothering occupations.

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Sophia and Heather both assumed unfamiliar occupations in order to mother their
children in the best way they knew how. I would suggest through their interactions with
the medical community and mothering responsibilities they began to demonstrate what I
would call medicalized mothering. They became expert on their children‘s medical
conditions while still needing significant support from the medical community even if not
well demonstrated through these brief stories. Although the medical community did
continue to play a role in the mothers and children‘s lives, the mothers were driving
agents in determining their children‘s course of medical and daily care. Both of these
mothers began to participate in activities that are typically reserved for the medical
community and these activities became part of a mother‘s daily responsibilities of caring
for her child. This type of care is in sharp contrast to the previous descriptions of
medicalized motherhood in the literature.
Equipment and Supplies
In the following sections, I will explore a number of other mothering occupations
that emerged in my study that mothers engaged in to further support their mothering
roles. Specifically occupations surrounding the often technical care of the g-tube since
that is what distinguishes them from not only other mothers, but other mothers of
children with chronic illness.
The mothers shared numerous stories around equipment, supplies, and general
care which were an obvious part of the day to day aspect of mothering a child with a g-
tube along with necessary and complicated interactions with medical professionals.
However, the stories that were told were richer than simply talking about the technical

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aspects of managing the g-tube and other aspects of their care. The mothers acquired
new occupation and meaning through these aspects of unfamiliar mothering.
Mothering a child with a g-tube inherently comes with managing medical
equipment and supplies (Thorne, Radford, & McCormick, 1997). The g-tube supplies are
necessary for the day to day functioning of the g-tube. A number of supplies including
the pumps, syringes, extension tubes, Mickey buttons, and even formula are provided by
large companies that can be difficult to negotiate. All of the mothers in the study
expressed some kind of difficulty negotiating or obtaining the appropriate equipment for
their child when their child needed it. While it may not seem like an incredible
meaningful aspect of a mother‘s regular care, there were many stories that described
these kinds of challenges and the amount of time needed to devote to these kinds of
occupations. The meaning associated with these occupations may become more clear
when considering that the equipment needed is not readily accessible in the community
and without it, a mother was not able to provide her child with nutrition.
I need a working pump. One of the mothers in the study, Akemi, has had many
difficulties getting the appropriate equipment on time and in working condition. At one
point, the company that was currently handling her supplies discontinued carrying
pediatric supplies. The same scenario also occurred with two additional families in the
study. Akemi was forced to use a new company, which was problematic, particularly
because they didn‘t even carry the feeding pump that she was currently using for Micah.
Akemi needed the equipment in order to feed her son effectively, but was reliant on the
new supply company to provide that equipment. Akemi‘s story below gives an example
of the work that many mothers must do to get appropriate equipment to be able to feed

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their child. The story begins as Akemi has told me that she strongly prefers the Infinity, a
certain type of pump versus the Kangaroo, which is a different kind of pump.
Akemi: I use the Infinity. I hate the Kangaroo pump.

Karla: OK. Why do you hate the kangaroo pump?

Akemi: OK. The, you know, at first, at the beginning we used a company called
XXX and sent us this infinity pump which worked fine. And then, the company
decided to drop the pediatric department, so, they, you know, the hospital referred
up to XXX healthcare. It was a nightmare. Terrible. Do not tell anyone to use
them.

Karla: Really.

Akemi: Sent me kangaroo pump, and,…. the pump died, like, you know, it
wouldn‘t load and, so I call and said I need it urgent. The first time it was in the
day time so it came in pretty, pretty fast, like, you know, in like, three hours.

Karla: Wow.

Akemi: Yeah. But then it died again. So, I, but it happened in the evening. Let‘s
say I call at six. Somebody called back at like, almost eight o‘clock. I said, ―you
know, I need it now, you know. I need to feed my kid. The pump is not working‖.
―Ahhh. The earliest we can ship is eleven o‘clock.:‖ ―I said, my son needs his
milk, you know‖. ―Uh, we try our best but the soonest time is at eleven o‘clock‖.
Didn‘t show up.

Karla: Eleven o‘clock at night.

Akemi: Yes. It actually came 1:30 AM. Yeah, they said, oh, the tire of the truck
blew up, you know, like, the driver couldn‘t come, like, you know, yaddy, yaddy,
yaddy. It came, but the battery unit wasn‘t working. So I had to plug it in. And he
had to sit down. So I called and said, ―you know what? This is like, this is not
right, that, you know, you kept shipping me bad pumps, and you know, it‘s
unacceptable, like, you need to send me another one, right away‖. So,……… they
ship me another one, you know, the next day, because I called in the morning.
The battery part is still not working.

Karla: Huh.

Akemi: Yah, and I said, ―you know what? I don‘t know how you would operate
your business. This is unacceptable. I just can‘t believe it. You‘re such a big
company‖. It‘s like multimillion company. (a very quiet serious voice)

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The beginning part of the story reveals how frustrated Akemi is with the company
and getting equipment that doesn‘t work. Clearly, there is a disconnect between the
supply company and an understanding of the urgency with which Akemi needs the
equipment. The equipment is required for her to feed her son, but the company still can‘t
produce a working pump. At this point, Micah received the majority of calories at night,
so not having the pump in the evening will mean that Micah will be short for his overall
calorie intake for the day, which further impacts Akemi‘s ability to provide her son with
the necessary nutrition. Akemi clearly becomes increasingly frustrated as she must be
very assertive to get her son‘s needs met and attempt to get the company to understand
the necessity of having a working pump, a type of negotiation that was initially
unfamiliar to her.
Mothering a child with a g-tube can be exhausting as many mothers portray in
their stories along with having to deal with the number of other things associated with
having a child with a g-tube becomes overwhelming (Coffey, 2006; Craig, 2003; Craig &
Scambler, 2005). The time and effort that goes into simply coordinating supplies and
equipment is significant. This story gives an example that conveys the challenges
associated with obtaining and maintaining equipment associated with the g-tube, but how
mothers can be successful at such negotiations as well. Individuals not intimately
involved with a child with a g-tube don‘t understand what it is like to not be able to feed
your child simply because you don‘t have the right equipment and the overall
inaccessibility of that equipment.

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None of the mothers in my study had previous experience working with medical
supply companies or managing equipment as they expressed through their stories. The
work it involved required new skills and patience. Managing the equipment became a
new occupation and required a new language for many of the mothers. The learning
curve of being effective at this kind of work needed be fast because the supplies are
necessary to be able to feed your child. Without a certain supply, you may not be able to
effectively feed your child as described above or be forced to go to the emergency room
to obtain the supply or medical assistance.
The mothers in my study found different ways of engaging with the suppliers to
get there needs met more effectively. Some mothers would harass and badger, others
would simply change companies, others ordering their own supplies from outside their
funding source, trading supplies with other mothers, and yet another one establishing a
positive more personal relationship with the company. Through their stories, I found it
clear that mothers all had or where in the process of developing their own personal
resources to deal with the complicated process of equipment and supply management.
By having adaptive strategies of how to get their needs met through the supply
companies, mothers were able to feel less helpless and work toward easing some of their
work around equipment and supplies. The skills the mothers were developing
contributed to more effective care for their children and were a significant component of
their medicalized mothering.
Interestingly, the difficulty with orchestrating appropriate medical supplies for
their children was an aspect mothers felt very strongly about conveying to other mothers.
They wanted to pass along what they had learned in the process to make someone else‘s

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journey a little easier. Mothers expressed a desire to inform mothers of the difficulty and
―coach‖ them on negotiating the system. Akemi was very assertive about wanting me to
know which companies were easier to work with. She asked me to write down the names
of the ―good companies‖ along with the ―bad companies‖ so I could provide the
information to other mothers if I had the opportunity. This was one area where many of
the mothers felt like they could contribute to the greater good of mothering a child with a
g-tube. Obtaining supplies and medical negotiations not only became an important
occupation for these mothers, but also a way to contribute to society.
I can’t change her button; I don’t have an extra one. Heather‘s story presents
an example of her learning more about the g-tubes and beginning to figure out how she is
going to manage her new occupations. Heather, the mother of the youngest child in the
study, was clearly still learning about g-tubes. Although Anna, her daughter, had only
had her g-tube for just over six months, previously Anna had an NG tube. The NG
required a different kind of care, but yet provided Heather with a base of knowledge. In
this story, Heather is trying to figure out when to change her daughter‘s Mickey button,
but already understands the importance of having appropriate equipment to be able to do
so as she describes in the following story.
Heather: I was shocked to find out he has a button that doesn't require changing.
(chuckles-referring to her communications online with another mother) But the
other two moms, they all say that they change it one to every two months and they
check the water or replace the water or check the balloon one to every two weeks
and I'm like I'm not going to do that. It's bad. So, to I really need to keep better
track. I just, you know, the buttons are so expensive. You know, it's 600 bucks a
button to be, you know, I don't know. We're on new insurance now, so I'm trying
to make this button last as long as I can, you know. I guess if I take it out and I
see that the balloon is fully intact and not lopsided, I'm not -- I don't think I'm
going to change it.

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Heather then continues on in the interview.
Heather: Well, I have a button.

Karla: Okay.

Heather: I have back-up -- we're always supposed to have one back-up button.

Karla: Okay.

Heather: So, that's why I haven't changed it out either because I only have one
right now and so I'm nervous I need -- I need to know at least a second one is on
its way.

Karla: Right.

Heather: In order to use that -- that one.

Karla: Mm-hmm.

Heather: That's why I haven't taken this one out because what if this one -- what if
the balloon is lopsided in this and I just -- I go through all these scenarios in my
head and I need to, um,….I need to call the company and get the new button sent
before I can, you know, feel okay with exchanging. You know, if I know one's
coming, then, I feel better.

Heather does have health insurance, but is worried about the expense of the button
as she has recently changed insurance companies and is not sure how often replacement
buttons will be provided or how long it will take to receive them. We can also hear she is
learning that there are ―buttons that don‘t require changing‖ and considering what the
other moms are recommending as far as when to change Anna‘s button. Heather is
trying to incorporate all the necessary information as to when to change her daughter‘s
Mickey button. She is learning and incorporating information from her friends, her own
personal beliefs, her new insurance company, and equipment necessities. The decision
making process in more complex than it appears, but in the end comes down to the
availability of equipment.

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Mothers in the study at times had to make medical kinds of decisions for their
children while incorporating a wide range of information. For example, Heather has
gathered information regarding buttons from other mothers versus the medical
community. The other mothers can be seen as acculturating Heather into the practices of
mothering a child with a g-tube. It is interesting that she seeks out other mothers for this
kind of advice versus Anna‘s medical team. I would suggest she has already begun to
assume the role of a medicalized mother and is no longer as dependent Anna‘s medical
team, but rather seeks out a variety of resources. She is then applying that information to
her situation while also considering the expense and availability of equipment. As
mother of a child with a g-tube, Heather begins to familiarize herself with equipment and
protocols so she can make these kinds of decision for Anna.
Equipment modifications; Simple but significant. The standard physicality of
the equipment and supplies would lend you to believe that mothers would use the
equipment in similar ways. However, that was not necessarily the case. Mothers were
able to find agency and create meaning in their use of supplies by individualizing their
use for their own children. The most individuality was seen with how mothers choose to
use the extension tubes, pumps, and protect the Mickey button and extension tubes.
Mothers were proud of the adaptations and a successful insertion of their own ideas. One
mother was even in the process of creating a company that would specifically address
appropriate equipments for families.
Two of the mothers chose to have the extension tube hooked up all the time to the
Mickey button to provide easier access for frequent feedings. Both mothers described it
as essential to always have the extension tube hooked up, but saw drawbacks to how they

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had chosen to adjust their use of the equipment. Heather would run the extension tube up
behind Anna through her shirts and thread it through the button hole and pin it. However,
Heather was then limited to only putting clothing on Anna that had a button in the back.
Frana had a very strategic way that she secured the extension tube to Heath‘s diaper in
order to prevent the extension tube pulling on his g-tube site. Frana actually
demonstrated to me during our final interview how she was able to thread the tube and
secure it with tape in a very specific manner in order to provide Heath with the least
discomfort in the event that the extension tube got pulled on. However, this process had
prevented Frana from finishing potty training Heath even though he is ready, as the
diaper is required to be able to adequately secure the extension tube. Even the mothers
who chose not to have the extension tube connected all the time took special care and had
individualized ways of protecting the stoma for example by modifying the child‘s
clothing or adding extra gauze.
An example of another way mothers chose to modify equipment may be seen
through the Y extension tube. Four of the mothers complained about how sometimes the
flap on the med port of the Y extension tube would come open, so the child, bed, and
anything else in the near vicinity would get soaked with whatever the mother was
attempting to put in the tube. The formula would go in one port and simple come out the
other. The mothers incorporated different strategies to address the everyday problem.
The following story describes the difficulty Frana experienced with extension tubes and
how she chose to address the problem.
Frana: so, I have gone away from those because the med port often would just
open up. So whatever you have coming in with the syringe would go right back
out and you have a mess like, and it‘s, it‘s sometimes not just formula, but it‘s

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stomach content, too, and you have the clothes, bed, and everything is wet.
Because, you know, at three years old, kids don‘t lie still. So, you know, however
they were pretty quiet, you know, I mean Heath didn‘t get it until he was almost
two, but still, you know, when they‘re small, you can put them and they lie there
and that‘s pretty much it, you know?

Karla: Right.

Frana: They don‘t go anywhere. But when they are at this age, they roll and, you
know, turn around, and they can get tangled up. So, sometimes when they lie on
the tube a certain way, the med port would open up. And, you know, I cannot tell
you how often you change the sheets and wash the pillows and the comforter,
because everything is soaking wet. Uhh, so, I have gone away from those tubes,
those extension tubes, and I‘ve gone to one that a, just a straight tube, and it also
has a bigger and a better, uhh, port. So, when you put the syringe in, it‘s a much
better fit.

Karla: OK.

Frana: With the other ones, with the Y, you constantly are just making sure when
the kid is just moving around that the syringe is not going to pop out and you have
a leak.

Karla: Feed everything else.

Frana: Right. Exactly. Yes. (laughing) And sometimes you don‘t notice, because,
you know, I mean, if I have Joanna there and I‘m talking to her, yeah, I have
Heath and then he moves around, and, even if he just moves lightly, and the thing
comes out, you know, it‘s, it‘s messy. So I‘ve gone away, but the, the
disadvantage of those straight tubes is they don‘t have a plug. So you come up
with your own stuff, nobody tells you that…

What also should be taken into consideration in Frana‘s story was that Heath
sleeps between his mother and father in their bed at night. So when she describes the bed
being soaked with formula, it is actually their bed and they are also getting soaked in the
formula. As can be interpreted in Frana‘s story, Heath‘s equipment is causing a simple,
but significant disruption in the family‘s ability to sleep at night and his mother to
effectively feed him at times during the day. Frana was able to problem solve, discuss
with the supplier, and then further adapt the new equipment to creatively address the

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problem and better meet everyone‘s needs. So although Frana‘s story may appear to
about the mundane specific aspects of equipment, the negotiation and modification of this
equipment was essential to support their day to day functioning. Frana has gained
knowledge and become an expert in this area of mothering to get her and her family‘s
needs met.
Mothers‘ abilities to embody their new or altered occupations associated with g-
tube feedings provide them with the opportunities to further adjust and adapt equipment
to better meet their needs. An interesting point to consider is that while each mother
dealt with the problem a little differently, four mothers spontaneously told stories about
the same problem with that specific type of extension tube, which may indicate a topic
for further research.
The pragmatics demonstrated through the previous stories begins to describe the
different kinds of challenges that mothers experience regarding the day to day care of a
child with a g-tube. Numerous stories were told related to how equipment and supplies
interfered with a mother‘s ability to provide the daily care needed for her child.
However, mothers were all able to eventually negotiate this kind of management and
modifications. The frustration could be heard within the mothers‘ stories, but the pride in
their success and skill at a new occupation was also heard. The psychosocial challenges
have been documented in families with children with g-tubes (Enrione, et al., 2005;
Sleigh, 2005; Townsley & Robinson, 2000). The difficulty acquiring and maintaining the
basic equipment to provide care for their children further contributes to those kinds of
day to day challenges. However, in contrast, I have argued that mothers are translating
these challenges into meaningful occupations that allow them to provide care for their

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children while expressing less psychosocial challenges as compared to previous bodies of
literature.
G-Tube Feedings
When I initially decided to study mothers of children with g-tubes, one of my
assumptions was that mothers would replace feeding with other occupations that were
meaningful between her and her child. I hypothesized these new occupations would
attempt to replicate the kinds of interactions that are likely to occur between a mother and
her child during feeding. My other thought was that mothers would structure g-tube
feedings to support those kinds of interactions. However, Nellie was the only mother
who described those types of experiences.
The mothers in my study described feeding their children by g-tubes as labor
intensive especially in the beginning or for the children who had poor tolerance. Their
stories suggest the pragmatics of actually doing the feeding took all their physical and
emotional energy. For five of the families, the actual g-tube feedings were enfolded
within other typical childhood occupations and/or where done when the child was asleep.
However, for the other two families, the g-tube feedings took place in a slightly different
way that shifted the focus back to the equipment and the opportunities that the specific
equipment allowed for the mothers. The mothers more often wove the g-tube feedings
throughout other daily occupations
G-tube feedings within everyday occupations. Many of the children‘s g-tube
feedings were done within the context of other daily occupations. The physical feeding
took place in a routine manner individualized for each family. The feedings were shaped
by the family structure, child‘s tolerance for the formulas, equipment used, and necessary

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feeding schedule. At times, I had difficulty eliciting stories around the actual g-tubes as
they were such a routine part of day to day experience.
Pam incorporated Isaiah‘s g-tube feedings into the family‘s daily meal schedule.
When I came over to the house for the second interview, the children and their father
were preparing and eating breakfast. Isaiah was eating waffles and the rest of the
children had waffles and cereal. They were all sitting together at the table with Isaiah‘s
pump and pole sitting behind him. It appeared that Isaiah was already physically
connected to the pump, but his father was just beginning to fill the bag with formula and
followed by putting it in the pump and turning it on. It was done with such routine and
normalcy that I would liken it to him filling a bowl of cereal for one of his other children.
I questioned Pam about the process of Isaiah‘s g-tube feedings that day.
Pam: Yeah, yeah. Oh gosh, yeah. Now it‘s one of those things with our eyes
closed-kind of things.

Pam briefly responds, but then goes on to another story. Isaiah‘s g-tube feedings
are a routine part of the family life. Isaiah‘s g-tube feedings are done while eating with
his three siblings and as he is also being provided solid food. His siblings are provided
with their own foods, but also some of the food that Isaiah can eat. The g-tube is simply
a part of the family‘s breakfast routine.
G-tube feedings as an opportunity for engagement. Nellie demonstrates a
great example of how she has specifically chosen certain types of equipment to feed
Mark that support opportunities for occupation, however, in a much different manner
than other mothers in the study. Nellie viewed Mark‘s extended g-tube feedings as an
opportunity for engagement and interaction. Typically, Mark was given his bolus feeds

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slowly over about 45-60 minutes, without the assistance of a feeding pump. Mark did not
tolerate his feedings being given in larger quantities or at a faster rate. If they were, Mark
would gag, retch, vomit, and/or have general discomfort. To provide a bolus feeding
over 45-60 minutes is a very labor intensive task for a parent. Without directly asking, I
explored why Nellie had chosen to continue to provide bolus feedings by hand versus
using the pump. Nellie knew what I was asking without me directly asking her the
question. Nellie‘s story is below.
Nellie: For the bolus feeding, umm, I know that you are questioning how come
we don‘t use the Kangaroo pump, one of the disadvantage of the Kangaroo pump
is that um, my, my husband feel that we don‘t have a communication or
connection with, with my son. At first we try to use it, it‘s convenient, it‘s very
convenient, you just put it there and then you let him, and then he kind of like,
turn it, turn around, but the bad thing is that, that when you are not there, and then
you let the child, kind of like busy, brushing your teeth, cleaning up, and he was
still watching the TV, getting excited, all a sudden the, the connection was lost,
you know, and sometime I found, oh my god, the milk spill on the, on the bed
already, he doesn‘t, the milk doesn‘t go inside,

Karla: So, when you are talking about the connection, are you talking about the
connections on the pump…

Nellie: The pump

Karla: Or the connection with, with Mark

Nellie: No, no, I mean, Both (assertively), ok

Karla: Ok

Nellie: Both, umm, connection with Mark is that during this 45 minutes you can
kind of like play with him, you can talk with him, you can kind of like, (change
voice) Oh, what did Elmo, um, talking about, oh, you want to sing with Elmo, All
those kind of communications and then create relationships. But um, the physical
connection with the Kangaroo and then there is the connection between the g,
and, and then the Kangaroo bag, with the g-tube

Karla: Mmm

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Nellie: Sometime, even though, the bag is really long, but you know how kids
used to move around and they tend to tangle him up

Karla: Um-mm

Nellie: And sometime if you, if the bag doesn‘t have a good connection, the
whole thing leak, [Karla: Um-mm] You have to clean up.

When I was listening to Nellie‘s story, I initially became confused. However, her
story conveys that she may have initially been talking about the emotional connection
with Mark, but she also wanted to talk about the physical connection to the pump as other
mothers‘ stories we have heard. By eliminating the Kangaroo pump, Nellie was able to
limit the amount of equipment malfunction along with carving out a daily time for her or
her husband to engage with her son. Nellie continues her story to further describe the
importance of the relationship connection to Mark, particularly for her husband.
Karla: Yeh, and so the first time when you mentioned that your husband preferred
to use the bolus versus the Kangaroo and you mentioned the connection, you were
talking about the personal connection to Mark, or

Nellie: Yeh, the relationship

Karla: Uh-huh. Tell me more about the relationship for you with the bolus feed
versus the Kangaroo pump.

Nellie: Uhh, well for me there is no difference because, um, during the feeding, I
will be with him, anyway, because I, I feel that, oh, um, you have, oh, it is the
only time that I can lay down with him, and then talk with him, teaching, teaching
him to speak, vocalize or whatever I want, but um, for my husband, he will used
to like, oh, I have a Kangaroo pump, he just walk to pick up things here, check the
email, you know, it‘s kind of like, more like, oh, I have more time.

Karla: Um-mm, yeah. Are there any other feedings, you mentioned the morning
feedings that you sit down, are there any other feedings during the day when
you‘re

Nellie: Evening, the last, the last meal, like 9:00 when he was tired and then we‘ll
say ok, um, dinner, um, a nigh-night and then he will turn off everything and then
we go inside, (voice change) brush your teeth, and then, we go, he will know that

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he has to go up and then he will lay down and then I kind of like, oh, he will tell
me, ahh, turn on the computer and then at the same time I will teach him how to,
to communicate with me through sign language so, um during the din, dinner, at
the last meal it is more relaxing because he was about to go to sleep, and then he,
he will kind of listen to me, sometime kind of like, if he‘s ahh, participate in,
respond to my communication also.

Nellie reveals that she feels she had always tried to make Mark‘s feeding an
opportunity to spend time with him. However, her husband did not. Eliminating the
pump has forced both of them to spend time engaging with Mark as all of his feedings are
done by bolus with the responsibility being shared by both Nellie and her husband.
Nellie further describes the evening meal that she shares with Mark when he receives a
bolus feeding. The tone, by which she describes their interaction, conveys a very
intimate time that she is able to share with her son, providing her a time to support and
teach Mark every night while giving him his g-tube feeding.
It may not be a coincidence that Nellie, the only mother who had explicitly stated
she had chosen to use the g-tube feedings as a time to connect and interact with her son,
happened to be the mother of the child who ate the least by mouth. At home, Mark ate a
very limited about by mouth, often simply tasting, and nothing when he was ill. Nellie
was also a mother who requested to put other kinds of things in the g-tube, but was told
no by her gastrointestinal doctor. Nellie was also the only mother who reported that she
worked full time outside the home. I would suggest that the circumstances under which
Nellie was mothering created a slightly different scenario than the other mothers,
possibly encouraging the use of the g-tube feedings to shape times of interactions. Nellie
was forced to work full time, spending her lunch hour and after work hours with her son,
which were also times when g-tube feedings were administered. Mark did not routinely

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eat by mouth and Nellie was denied permission to put other kinds of food through his g-
tube. The g-tube feedings were one of the primary experiences she and Mark shared
around feeding and Nellie was able to recognize that as a time she could spend with her
son.
The numerous stories surrounding equipment and supplies indicate their
importance in the daily lives of these women and children. Although, the stories
supported general themes, the individuality within the stories was remarkable The
individual stories exposed the tremendous amount of work and management that goes
into the equipment and supplies, but that is only part of the story. Mothers found
opportunity for agency through the equipment to support their own occupations. They
also were able to incorporate new occupations based on the care requirements of their
child. This type of work further supports the ideas of medicalized mothering as discussed
earlier in the chapter. The stories did convey a need to provide increased support
services and resources to mothers and families when their children first receive a g-tube.
They also supported that children within different families may have different equipment
needs that are determined for reasons other than medical, which is not currently
recognized in the medical community.
Burdens and Benefits of Caregiving
Through the stories of medicalized mothering, including equipment and supplies,
it is not surprising that themes emerged in my data that would suggest mothers are
enfolding meaning and engagement into the often technical and non-technical aspects of
caring for their child with a g-tube. I did not find evidence in my research to support
previous concepts in the literature that often focused on the negative impact and caregiver

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burden of raising a child with special needs. The literature regarding mothering a child
with a g-tube discusses how feeding suddenly becomes an unfamiliar technological
process and causes increased stress and burden to mothers and family members (Judson,
2004; Miles & D'Auria, 1994; Ratliffe, et al., 2002; Thorne, Radford, & McCormick,
1997). Enrione (2005) specifically described caregiver stress as often associated with
education and the implementation of the technical aspects of caring for the child with a g-
tube.
Coffey did a metasynthesis on the parenting of a child with chronic illness (2006).
She found strong themes around the burdens of caregiving for a child across many of the
studies. The themes expressed in Coffey‘s synthesis often depicted great sadness, worry,
depression, and hopelessness. The themes and stories expressed by the mothers in my
study in some ways initially would corroborate those findings, but what emerged was
more complicated as mothers also expressed great hope, rewards, and satisfaction in
mothering their children. The paradox of mothering a child with special needs is
beginning to be documented in the literature (Green, 2007; Larson, 1998). I would
suggest the burdens associated with mothering such children are easily identified, but it
takes more time, stories, and discovery to uncover the richness of the experience as was
allowed through my study. Further exploration situates these stories of caregiver burden
and reward within the larger context of mothering. It provides the opportunity to
examine the many layers of mothering a child with a g-tube and how the daily care can
become meaningful occupation.
When examining the stories told by the mothers in my study, the meaning
associated with the daily technical care a g-tube requires and associated feedings was

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complicated and evolving for each individual mother. Through the mothers‘ stories it
may initially appear that having a child with a g-tube creates more stress and burden, but
further examination reveals a much more complicated meaning. The mothers in my
study often quickly transformed the stressful unfamiliar caregiving experience into an
opportunity to competently care for their child.
The mothers in my study emphasized the rewards and benefits, not focusing on
the burden or the stress of caregiving. Sophia, whose son Erek, required extensive care
due to his tracheostomy and g-tube, was grateful for the opportunity to mother Erek. Her
stories contained multiple examples of how she enjoyed providing for Erek‘s many needs
and often discussed what she had learned from doing so. Sophia was hesitant, similar to
other mothers in the study, to focus on burden of care or negative aspects of caring for
her son. The following story follows a discussion regarding the labor intensive care that
Erek requires on a daily basis.
Sophia: Oh, it‘s been great (providing care for Erek). I love – I love him with all
my heart and I wouldn‘t – you know, I would – of course I would love him to be
healthy and be, you know, normal not – not – not – not sick. But, I don‘t really
mind taking care of him, you know. It change completely your life and opinion
about other people and, you know, you take life for the grant – for granted, and I
think every day so, so important, you know. Because you never know what can
happen, you know. And they give us so many like, negative stuff about him and
we just enjoy it and, you know, he‘s our miracle baby. I guess you can say that.
And then mystery, because we don‘t know why he‘s so sick. Why – what
happened, and what he has, and we don‘t know what the future brings, but, we
hope, you know, everything is going to be fine.

Sophia‘s story highlights another side of mothering a child with a g-tube. In
previous stories, Sophia acknowledges the exhaustive work required caring for Erek‘s
many technical needs, but when further probed about the specifics of the care she seems
to view Erek‘s life as a true miracle and being able to take care of him is a gift. Her

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mothering occupations may not be quite typical and at times exhausting, but she is
grateful to be doing them.
Another perceived benefit the mothers expressed in my study is how mothering
their child had influenced their own perceptions of the world. Many of the women
shared stories on how their relationship with their child had shaped their thoughts and
behaviors not only influencing how they interacted with their child but also others in their
lives. Jane‘s story is a good example of how this theme emerged in my data. In the
following story, Jane begins to describe the impact that mothering Braden has had, not
only had on her, but her entire family.
Jane: Umm, I don‘t know, he‘s like, really like set us straight, like—we like, we
used to be like so caught up in like,… you know,… live frivol-, the things in life
that don‘t matter, we were obsessed with. And now we kind of just like, you
know, just like I said, clothes is one of them. Um, just like going out to nice
restaurants, we used to do a lot, and those things don‘t matter.

Karla: Tell me more about that. Being caught up in frivolous things. And he set
you straight.

Jane: Just like he kind of like showed us, like, you don‘t need this stuff to be
happy. You don‘t, you don‘t need all this extra stuff that, that isn‘t going to
change you or it‘s not like, there‘s just like extras, they‘re like friv-- they‘re not
necessary, they‘re, they‘re not going to change your life, they‘re not going to
make you happier, they‘re not going to do anything for you. There‘s things that
other things that can do the same thing that are easier, er. You don‘t need, well
maybe not easier, you just don‘t need, like, I don‘t know, like, there‘s so many
things I thought I had to have that you just don‘t need. [Karla: um-mm] I mean
Braden doesn‘t really have anything, and he‘s like totally happy. Yah. Does that
make sense? (starts laughing)

Karla: Yeah. Why don‘t you tell me an example or a story about it?

Jane: Um… (pause)Like maybe, like my weight. Oh, I always wanted to be
skinnier, oh, I always wanted to be fitter, I always wanted to be able to run faster,
you know, this or that. It doesn‘t matter. Those are, that‘s like a, a, a, a, frivolous
thing that really isn‘t going to get you any further in life. Well, maybe the weight,
if you‘re like healthier. It‘s not really going to put you ahead in life, or make you

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happier, it just make you feel like sit back and think what is it that makes me
happy.

These life lessons appeared to have altered Jane‘s perceptions on the world.
Braden has not only made Jane rethink her personal value system, but has also expanded
her view of normal as she continues with the story below.
Jane: You know we just treat him like, he is a (couldn‘t quite understand), like our
other kid, we don‘t treat him any differently. Umm, you know, of course, it is
like a juggle, because I had to stop working, you know and go over to part time
and um, umm,… (slight laugh) I don‘t know. You know, he is just like one of our
kids. It‘s just like no, it‘s just, we have gotten used to it, to where it‘s like normal,
you know. I can‘t say it‘s…

Karla: So what ways, if any, has your mothering experience been changed by
Braden having a g-tube?

Jane: Umm, just, we definitely have more patience, more accepting of everybody
else, cause I see like people have differences

Karla: Um-mm

Jane: It was totally like,..yah, like, people that are different, I would have been
before going like, oh my god, what‘s wrong with them, now I am like oh, he‘s
like you know, he has a g-tube or he is in a wheel chair or look at him, you know,
it‘s like no big, [Karla: Um-mm] it‘s like I am definitely more accepting of
people‘s diff..., I am not as scared of, of people who are different

Mothering Braden has contributed to changing to how Jane perceives and
interacts with others in her world. She has become more comfortable with people‘s
differences. Previously, Jane was scared of people who were different and mothering
Braden has forced her to challenge and rethink her fears. The entire experience has
apparently led her to reevaluate her life in a way that she described how she has found
greater meaning and happiness.
Akemi describes the experience of mothering her children as not only changing
her larger perception on the world, but also her general philosophy on mothering. In the

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beginning of the story below, Akemi describes how culture influenced her views on
children with special needs specifically as she was growing up. The following story was
taken from a context where Akemi was describing her initial unfamiliar experience of
participating in her children‘s therapy appointments and how that began to shape her
interactions with her children along with changing her perceptions.
Akemi: Yeah, so, you know, got to see like more, bigger world and to the side I
never expected like, you know, in my country people don‘t accept like people
with special needs, you know. Like, it‘s not – how do I say this. It‘s even worse
than not accept them. They tend to look down or make fun of the, you know,
special needs kids or family. I was a mean girl when I was in, you know,
elementary school.

Karla: You were a mean girl?

Akemi: I was. Seriously, like, and I, I didn‘t like friends who were different, or
even like less smart. I used to be smart, but not anymore. (laughing) Seriously,
like you know getting good grades without having to study. Something like that. I
never understood why, you know, friends couldn‘t do that like - you know, and,
and part of it – I feel like, you know – I grew up with the expectation of being
smart, being good, being like, you know, the best in term of, you know, the
intelligent way, but there wasn‘t a lot of value that was taught to me, like you
know, how to be kind and stuff, seriously.

Karla: Really.

Akemi: And, yeah, I learned, you know, from things that I‘ve seen, you know, the
experiences that I‘ve been through with my children and I totally love it, you
know. If I had not gone to any of the therapy places and, you know, seen all those
children who need help then I would like have totally missed this life, you know.
Like, yeah. It‘s that.

Karla: That‘s really interesting.

Akemi: Yeah, seriously. Yeah, I would have been, just, you know, one life that
start and then ended with like nothing. Like nothing specific in that life, but now
like there‘s something in it and I, you know, look forward to do something more
about it, like to help people.

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Akemi‘s story continues below as she moves from a larger cultural world view to
her children‘s impact on her own mothering philosophy and occupations.
Karla: Tell me more about what you mean by you would have started this life and
just ended and there would have been nothing specific in your life. Tell me more
about what you mean by that.

Akemi: Like, you know, if the two kids were typical, then I would probably work
at the company, you know, just do the same thing every day and the kids probably
grow up with the babysitters and, you know, and probably like don‘t get to – to
see how they grow, to learn the value and the process of, you know, growing up,
spend time with family and you know, having to missed out all these piece of like
the special needs kids and, you know, other parents. It‘s not just special needs
kids now. It‘s like kids with serious medical issues, you know. It‘s like – and you
– and I‘ve met like people from different level, you know, the financial levels,
too, like I had no idea before that. You know, a mother – a single mother with five
children, you know, would be like, you know, I, I couldn‘t imagine. I never met
one, never knew one, you know. Or like teenage, you know, mom with a
boyfriend and child with a cancer, something like that. Never knew one. Yeah, so
you know, ultimately what I see the most is that love is all around, especially in,
you know, like these two unique situations, like kids‘ families at the therapy
places, and the families at the hospitals. Like, once in a while we see like, you
know, families who left the child at the hospital and we never saw the parents,
which is very sad. Sometimes even, you know, with babies, and yeah, it is sad.
You know, something like that. I would never see anywhere but there.

Karla: Yeah.

Akemi: Yeah, so, you know I would say it‘s the whole – the big – the bigger
picture of life and the world, you know, how it‘s like, you know, you can choose.
Like, you, you always have choices, but you can‘t control every single thing, but
you still have, you know, choices. Like, you can choose the way you want to be.
Yeah, but, you know, even though sometimes we choose to be this way, but like
doing it is sometimes difficult you know, cause like we‘ve been some, like this
person for a long time, and trying to, you know, change things.

Akemi‘s story shows many ways in which her life has been impacted by having
children with special needs from her day to day mothering occupations to her larger
world views. I interpret Akemi is describing her life being void of meaning and
occupation. Arguably if Akemi had typical children, she might have drawn more on her

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family and cultural resources as to how to mother them. However, having children with
special needs challenges her resources and provided Akemi an opportunity to explore her
own ideas of mothering. Through these mothering experiences, Akemi seemingly found
greater meaning, personal occupation, and began to challenge some of her own previous
cultural beliefs.
Green‘s (2007) work can be helpful when thinking more about the multiple
meanings of mothering work involved in the daily care of children with chronic illness.
As a result of surveying and interviewing mothers of children with disabilities, she
discusses that beyond the physical care of their children, mothers perceived many
benefits of caring for a child with special needs. Her findings suggested the experience
of mothers was more ―emotionally complex‖ than previous thought (p. 161), which more
closely aligns with my findings. Green found perceived benefits to be areas such as
confidence, skill achievement, assertiveness, and a reassessment of what is meaningful in
mothers‘ lives similar as to what was described through Jane and Akemi‘s story. Green‘s
work supports my findings, but I would build on the idea of perceived benefits. Mothers
acknowledged the challenges that can be encountered in the day to day care of their
children, but emphasized stories about of the benefits of raising a child with chronic
illness with a g-tube. Even going as far to describe the relationships as transactional,
discussing how they have been transformed and learned in the process.
I want to be clear, that I am not arguing the mothers in my study did not
experience extraordinary challenges associated with the daily care of their children with
g-tubes. But I would suggest their experiences as related to these occupations,

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particularly the more unfamiliar occupations, at times provided unexpected occupational
fulfillment.

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Chapter 7: The Dimensions of Mothering
The following chapter will focus on the most prominent themes from my research
regarding mothering. The themes are all centralized around a mother‘s need to be able to
feed her child. As well as other occupations mothers suggested through their stories that
they did when they could not orally feed their child. The four themes that will be
discussed are a mother‘s primal instinct to feed her child, the consuming task of being
able to feed your child, pumping as an occupation, and the alternative food provided in
the g-tube. Ruddick‘s (1989) conceptualization around mothering work as discussed in
Chapter 2 may be helpful in initially framing some of these themes. She discusses the
concept of preservation which becomes a highly challenged task for the mothers in my
study. The ability to recognize and meet the needs of a medically fragile child is
complicated, specifically related to feeding. The mothers in my study were all unfamiliar
with the types of feeding needs their children had and the equipment they would need to
support nutrient intake. The skills needed are not ones typically shared among mothers
or in many cases are even culturally available. In the absence of being able to easily
provide their child with nutrition, mothers needed to negotiate how they would preserve
their child‘s life. This negotiation required elaborate coordination among themselves,
their child, extended family, and often the medical community.
To further complicate the feeding process, the acts of preservation may actually
be seen to conflict providing nurturance, Ruddick‘s (1989) second demand of mothering
work. Feeding becomes medicalized with equipment and intertwined with other people,
often physicians, therapists, and other caregivers for children with g-tubes. A mother‘s
ability to successfully nurture a child‘s physical and emotional well being while

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providing a successful feeding experience may be challenging as will be demonstrated in
the examples below.
The Primal Instinct to Feed My Child
One of the primary roles for a mother is to be able to feed her child (Campbell,
1988; Olson, 2004; Ruddick, 1989; Satter, 1990, 2000; Sleigh, 2005). As discussed in
Chapter 2, the inability to be able to feed your own child is often interpreted as failing at
mothering (Humphry, 1991). Feeding also signifies a mother‘s competency as a good
mother in her social worlds further determining her own perceived success (Kellegrew,
2000; Olson, 2004; Ruddick, 1989). Considering the extensive discourse on the
importance of being able to feed your child, it is not surprising that all of the mothers in
my study shared stories corroborating these findings. The mothers in my research went
to great lengths to feed their children by g-tube and/or by mouth as is also documented in
the literature (Spalding & McKeever, 1998; Thorne, Radford, & McCormick, 1997).
They all agreed feeding was one of their primary occupations with their children and
were resistant to give it up. Townsley and Robinson (2000) discussed in their findings
how feeding was not only instinctual to mothers, but was also extremely difficult to
relinquish. Eating often was the children‘s highest developmental level. They also
determined through their work that mothers were initially stressed by the introduction of
unfamiliar equipment into the feeding process. The mothers in my study were all forced
to learn new ways of being able to supply their children with nutrition. All of the
children in the study were receiving the majority of their calories by g-tube, but they were
also all at least being provided tastes of food. The children ranged from one child who
was actually receiving about 40% of his calories by mouth to another child who took

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occasional tastes when he was feeling healthy. Whether the child was receiving their
nutrition by mouth or by g-tube, it was still equally important for the mother to be able to
fill their child‘s nutrient needs.
Frana believed it was her primal instinct as a mother to be able to feed her child
and referred to it multiple times throughout the interview. In the following story, Frana
describes what it was like for her to not be able to adequately feed her child when he
wants to eat.
Frana:……When you‘re a mom and you know you‘re struggling to get food into
your child, I think I mentioned that before, that‘s your most primal instinct, you
know? Or one of them. To be able to feed your child, to, you know, to sustain
them. [Karla: Yeah.] And, you see your child struggling every day, I mean, these
cups get pretty filled up. (goes over to the cup that he spits and vomits in and
holds it um to emphasize) [Karla: Uh-huh.] And you see and you could just start
crying, just thinking, all of this could have been in his stomach.

Karla: Now, when he‘s really sick like this, does he try…

Frana: He wants to eat.

Karla: So, he‘s hungry.

Frana: He‘s hungry.

Karla: Um-mm…

Frana: And it drives me……(starts crying) I don‘t know what other people do,
but his case is just so complicated.…….Just all the time. And when he says,
mommy I just want to eat. I mean, I just think, oh my God, I can‘t take this
anymore.

Frana‘s story sets the scene for the importance of being able to feed your child as
discussed in the literature. She is devastated at not being able to feed her son. Frana is
exacerbated as Heath wants to eat, she wants to feed him, but his medical challenges are

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the barrier. She has equal difficulty feeding him by mouth or by g-tube. Heath does not
tolerate his g-tube feedings well, often refusing them by attempting to pull out the g-tube.
Many of the mothers were juggling both oral and g-tube feedings. Some of the
children were not able to sustain on the oral intake, so they needed at least 50% of their
intake through g-tube supplementation. The other groups of children were primarily
receiving g-tube feedings, but their mothers wanted to continue to provide them with oral
feeding experiences. I am going to continue to use Frana‘s story as an example of this
process. In the following example, Frana was participating in the interview with me, but
feeding Heath as well. Frana was alternating among supporting Heath in his oral feeding,
continuing to participate in a conversation with me, preparing food for Heath to eat orally
and receive by g-tube, and eventually starting to g-tube feeding him. Heath‘s strong
desire to eat by mouth can be seen along with his resistance and discomfort with g-tube
feedings. He also was attempting to engage both his mother and me in the feeding
experience by showing us what he was eating. The following story is a long quote, but I
felt it was necessary to demonstrate the process of feeding Heath along with Frana‘s
commitment to providing her son with nourishment.
Heath: There‘s carrots in there.

Frana: I think there might just be a tiny, tiny bit, OK?

Heath: I don‘t want it, carrots.

Frana: OK. We‘ll eat from this side, OK? Alright. Now, we‘re going to take
small bites, OK?

Heath: I want broth.

Frana: You want the broth instead of the rice, right now? OK. Let me check. OK.

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Heath: I want rice. (his mother trying to get just the right amount on the spoon)
No carrots. No carrot.

Frana: That‘s a speck of carrot. (as she takes it off) Alright, show me how you
can chew.

Karla: I want to see, too.

Frana: Yeah.

Karla: Wow. You must have been practicing that, huh?

Frana: Uh-huh. That was fast. OK. Good job. Swallow. Swallow again. Swallow
again. Push it all the way down. (his mom was trying to coach him step by step
through the process of chewing and swallowing-at this point with the soup, she is
feeding him every bite, apparently to provide more control with bite size and what
is on the spoon)

Heath: I want…

Frana: Broth?

Heath: Yeah.

Frana: OK.

Heath: I want more.

Frana: More broth?

Heath: No carrot. I hate carrot.

Frana: Don‘t say that.

Heath: I hate carrot.

Frana: Don‘t say that. (you can hear him doing effortful swallows on the tape)

Karla: So your feeding therapy you felt was helpful?

Frana: Yeah, it was helpful, but, um, you know, I‘m still dealing with the same
issues.

Karla: Same challenges. So when you did have feeding therapy what was your
role within the feeding therapy process?

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Frana: I think, I always tried to give the therapist a chance to, because … (Heath
has increased coughing)

Heath: I don‘t want broth.

Frana: .…there‘s such clingyness. OK. I know you want to do it, (to Heath as he
is trying to direct the spoon) it‘s just, you usually take a bit less. No broth, you
said?

Heath: Right. No carrot.

Frana: Some on the spoon. OK. Chew, chew, chew, chew, chew, chew chew (lots
of coughing) . Still chew it, still chew, still chew. Did you swallow already? You
are way too fast (in a supportive kind of way). Swallow again. Push it all the way
down. Try it again. Swallow again. Good. Did you hear it go down? Did you feel
it go down? (lots of coughing and audible swallows)

Heath: Yeah.

Karla: I heard it.

Frana: I did too.

Heath: Me, too.

Frana: Good. Now, chew, chew, chew, chew, chew. Chew, chew, chew. (lots of
coughing) I told you what I did when I came back from out of the country. You
know, we had that whole talk and I said no more cup and that lasted for two
weeks and it was great. (lots of coughing and some spit) And, and then when this
virus hit again, it was all over. And, now I hear that he doesn‘t do it at school as
much as he does it at home.

Karla: The spitting?

Frana: Uh-huh. And I‘m kind of thinking because I think they get… - Heath you
can swallow that, it‘s just liquid. (a little frustrated)

Heath: It doesn‘t work.

Frana: What‘s not working?

Heath: This. The broth.

Frana: You did a couple spoonfuls.

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Heath: I want the rice…

Frana: You want the rice again?

Heath: Nuh-huh.

Frana: You want the broth?

Heath: Nuh-huh.

Frana: No?

Heath: It doesn‘t work. The soup and the rice and the broth.

Frana: Ummm, I think you could try again, just tiny, tiny bits. Do you want to do
it? (referring to self-feeding) Oh, good. Good job. (Mom has warmed up the beef
puree in a cup of hot water and then drawn it up into a syringe to give Heath a
bolus feed while we have been talking. She sits down next to him to very
nonchalantly start a bolus feed, putting it in with a syringe in a very slow manner)

Karla: Like the perfect amount, Heath… (Heath showed me the spoonful of food
that he was going to put in his mouth) So you said at feeding therapy then, you
were trying to give the therapist…

Frana: I always tried to kind of step back. I mean I was always kind of in the
room and close, but I tried to,…you know, because I felt it was harder on him for
me to be, you know, the focus wasn‘t there when I was there. So I always tried to
just say, I‘m here, but, you know, this is your time.

Karla: So you were in the room with him?

Frana: Oh, yeah. Yeah. Chew, chew, chew, Heath.

Heath: (big spit and continuing to cough)The rice is not working.

Frana: And now I wonder, OK, has the cup become a crutch? You know, but the,
you know, the …

Heath: I don‘t like these.

Frana: danger of aspirating is still there, you know…

Heath: The soup is not working.

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Frana: It‘s not working?

Heath: Nuh-huh.

Frana: OK.

Heath: I want crunchy stuff.

Frana: Of course you do.

Heath: Stop, mommy. (Turns toward his mom and tries to physically stop his
mother from giving him the syringe feeding by bending the extension tube)

Frana: No, no, no, Heath, please. (a little frantic)

Heath: Please stop. (starting to whimper/cry)

Frana: You know what, Heath? I gave you the last one when we left school. (in a
hurried voice)

Heath: Please stop. (starting to cry a little)

Frana: Please let me do it. Why don‘t you think about what you want to eat and
I‘ll get it for you.

Heath: Mommy, stop. Mommy…(crying, very sad-looking like he is not feeling
good-Frana stops the bolus feed. Heath‘s face changes along with her voice
changing to less frantic and more comfortable as they both move on.)

Frana: This is, this is what I mean. And, you know, sometimes I just fold, though,
but if I can kind of do the distraction… I went to these tubes because the other
ones with the Med port, the Med port opened so often or the clip opened and the
Med ports we have to stop kind of…

Heath: Mommy, I want crunchy stuff.

Frana: …running back out. …(Physically showing me the tube that she has
relatively switch to using)

Heath: My crunchy stuff.

Throughout the eating experience, Heath was often spitting pieces of chewed food
into the cup. Frequently, he also appeared to bring up small amounts of food that had

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been chewed and swallowed, at times attempting to re-swallow them and other times
simply spitting it back in the cup. Generally when Heath was requesting to change food
such as ―I want broth‖ or when he simply stated, ―it doesn‘t work‖ was in relation to
having difficulty orally managing the food and swallowing. Frana remained extremely
patient and supportive. At one point, I could hear her frustration with his refusal of
simply broth. Crunchy food is Heath‘s favorite, but due to the texture, he appeared to
have the greatest amount of challenge.
This excerpt of the interview demonstrates the work that Frana must do to support
and maintain Heath‘s oral eating. She must negotiate his preferences, monitor his safety,
and support the physical steps of eating, all well continuing to encourage positive social
engagement. In addition, Frana inserted teachable moments as related to eating and
general manners. For example, Frana would talk Heath through the eating process step
by step telling him to chew, swallow, swallow again, push it down, and then following up
with whether he actually felt it go down. At one point, Frana tried to shape Heath‘s
behavior to be more acceptable by asking him not to say ―I hate carrots‖.
At the same time, Frana attempted to prepare and give Heath a bolus of blended
pureed food. Frana was quite easily able to begin the syringe bolus feeding with very
minimal disruption to Health, due to the way she physically constructed the extension
tube and port. He clearly was aware as he briefly referenced the syringe as she inserted
it. While there was a sense of chaos to the feeding experience; the interaction smoothly
vacillated between Frana and Heath. However, there was an abrupt halt as Heath leaned
over and physically attempted to stop the g-tube feeding. I could feel the moment of
culmination as Heath was clearly uncomfortable, but as Frana desperately attempted to

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get in just a few more ccs. They pleaded with each other as they had equally strong
stances. In the end, Frana conceded as she has indicated in previous stories that Heath‘s
overall comfort was also important for her, which clearly is being compromised at this
point. However, once she conceded both Frana and Heath are able to immediately
resume their previous roles.
The detailed negotiation along with the tediousness of the story gives insight into
Frana and Heaths‘ feeding experiences. Frana attempted to delicately balance Heath‘s
comfort, g-tube feedings, and oral meals. The tightrope that she walked can be felt in this
story. The intricate construction that must take place to support Heath‘s oral feeding is
overwhelming, which speaks to Frana‘s extreme desire to support his oral intake and
fulfill his request to eat. Frana had to specially prepare food, construct the environment
to have available ―spit cups‖ when needed, and then coach Heath through small steps of
the eating process. Heath‘s strong reaction to the g-tube feeding must be contributing to
Frana‘s preference for encouraging his oral feeding at great cost. Also, the discomfort
associated with his g-tube feeding would seem to go against Frana‘s understanding of a
mother‘s role in feeding your child. However, the balancing act must continue in order to
support Heath‘s growth and health.
Frana may be thought of as participating in all three demands of mothering
according to Ruddick (1989). She is desperately trying to provide Heath with his
nutrition for survival, but even with the combination of oral and g-tube she continues to
have difficulty. The process becomes more complicated as Heath is incredibly
uncomfortable in some ways with both aspects of feeding. Heath is really struggling and
Frana made the choice to support his overall comfort versus his caloric needs, which

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would bring Ruddick‘s demands into conflict. Frana‘s struggle makes sense when
situating it within this framework. As Frana continues to address the first two demands
of mothering, she can even be seen trying to support Heath‘s future social acceptance of
eating by encouraging him with the appropriate rules for oral eating.
One may suggest that the findings of the importance of a mother being able to
feed her child is obvious and has been well documented in the literature. I would agree,
but the literature discussion over simplifies a mother‘s need to feed her child, specifically
when the child has a g-tube. It does not adequately depict the work that the mothers in
my study went through on a daily basis to meet their children‘s nutritional needs. The
management of the g-tube feedings, difficulty with oral feedings, inherent medical
barriers, and the balancing act among all three was exhaustive work. I was struck over
and over again by the tremendous time, effort, and emotion that the mothers were
investing in their child‘s daily nutritional intake.
My Life Revolves Around Feeding
Feeding took large amounts of time and energy on a daily basis for many of the
mothers in my study. Heyman et. al (2004) actually found that caring for a child with a
chronic illness with a g-tube required twice as much time as caring for a child with
chronic illness without a g-tube. While the actual time required to care for the children in
my study was not measured, mothers told stories describing how feeding their child often
consumed them on a daily basis. Clearly, a mother‘s dedication to feeding her child as
discussed in the theme above is closely intertwined with this particular finding. It makes
sense that a mother‘s life might revolve around feeding their child due to their child‘s
highly specified needs and a mother‘s desire to meet those needs.

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Heather‘s stories are going to be used to illustrate this point. In the first story,
Heather describes what she had to do to support her daughter to eat by mouth. The
following story describes what Heather was doing to support Anna‘s oral eating to avoid
a g-tube during that time.
Karla:…tell me an example of what you were doing every three hours to try and
get her to…

Heather: Umm, well, umm -- and I still do this now. She gets swaddled.

Karla: OK.

Heather: In a, you know, a swaddler. Umm, she has to be sucking on her pacifier,
umm, and the vacuum noise is -- is on. Umm, and she usually uhh -- now, because
we don't have to get her asleep to feed, umm, now she only usually takes two naps
a day. But, she usually can tolerate more volume while she's sleeping than when
she's awake, because she's fully, ahh, relaxed and muscles, you know, aren't
moving too much. And things like that. But, um, prior to the G-tube, it was every
three hours, I would have to swaddle her up, try to get her to fall asleep. Umm,
and once she was asleep, I would take the pacifier out of her mouth and slip the
bottle in.

Karla: Umm-mmm OK.

Heather: Umm, and umm, sometimes her tongue would -- sometimes, she would
just -- it just had to be the right position at the right time, and I was the only one
that could feed her. Umm, I had nurses -- nurses, LVN's could not -- and it wasn't
-- it's not that it was rocket science; it's that, you just had to get that nipple into
that exact right spot in her mouth so that she would suck on the nipple
appropriately.

Karla: Um-mm

Heather: And even when she did eat, sometimes it was just an ounce.

Karla: When she was sleeping.

Heather: Yeah. And then, sometimes if I did get her to eat, as soon as she woke
up, she would just barf whatever I got down. And it just got to -- it's just -- it just
got to be too much pressure.

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Heather constructed the perfect feeding environment for Anna, but Anna would
still eat very limited amounts. Heather was supposed to be feeding Anna every three
hours. However, each feeding needed to begin with Heather trying to put Anna to sleep,
so she could get her to eat. Often if Anna would awake before the feeding was finished,
she would vomit whatever she had consumed, so the process would immediate start
again.
Anna did receive the g-tube and quickly stopped eating by mouth. However,
Anna had a difficult time tolerating the g-tube feedings as well and continued with
frequent vomiting. Heather put tremendous effort into feeding Anna, except now through
the g-tube. In the following story, Heather begins to describe how difficult it was for
them to go anywhere as Anna vomited when she got upset along with the frequent small
feedings that Anna requires through the g-tube.
Heather: Umm, and she‘s more afraid of men than she is women. Umm, but she
now knows – she knows the doctor‘s office lobby. And she gets hysterical every
time we‘re just in the elevator. She knows where we‘re going. So, my whole – my
whole life is revolve – revolves around vomit. And trying to prevent her from
vomiting. Umm, and we went to the doctor last week and the doc – the people in
the office said, you know, you really need to keep, you know, one of those like,
vomit bowls. So that when she vomits you can catch it. And I was like…….why?
I mean, I would walk around with a bowl underneath her mouth all day long. I
mean, really.

Karla: Umm.

Heather: …. And, I can hop around on one foot, trying to distract her. And this is
my new thing where I‘ll feed her part of the feeding, and then let – go let her play.
Whereas before I was trying to get all two or three ounces in within like, ten
minutes, and just leave her in the high chair the entire time. Now, I do one ounce,
and then I let her go play for 20 minutes. And then I do one ounce and let her go
play for 20 minutes. ‗Cause she can‘t – she doesn‘t get the feeling of being full.
But, as a downside, I literally probably spend the entire day feeding her.

Karla: Mm-hmm.

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Heather: Umm, you know, one ounce – I gave her one ounce right before you
came. And one ounce now. And I‘m going to wait ten more minutes and give her
another ounce. And then she‘s due for another feeding at six o‘clock. I mean, I
literally spend the entire day feeding her. (you can hear Anna have a slight
wretch, gag, cough in the background, when I looked at her, she looked green,
and that a vomit might be on its way, Heather clearly saw/heard the same thing
and quickly claps her hands a few times very loudly and stops the cycle, no vomit
this time)

Heather continues her story below.
Heather: You know, if I can do an ounce and a half every hour between the hours
that she's awake, it really, it's going to be like 25 ounces per day which is more
than what I was getting in before. But you live, eat, breath calories, food, high
chair. You know, that's, the whole day is just based on, I can't go anywhere we're
about to, we have to feed her. You know. We become a prisoner in the house.
(ironic chuckle)

Karla: Yeah, because if you were saying about an ounce and a half. Every hour
and a half, hour.

Heather: Yeah, every hour and a half. I mean, literally, it's like feed her, ok, let's
run to (the store), let's run to the market real quick. Come back, as soon as we
walk in the door I heat up the milk. I'm always, my entire day is, and even at night
because I'm up at night working on her machine too, it's food, food, food, food,
food.

Heather no longer struggles to feed Anna by mouth. Her struggle has been
replaced by feeding her by the g-tube. Heather‘s preservation extends beyond nutrition,
but also strategies developed to prevent vomiting. Previously, Heather‘s life revolved
around the routine of putting Anna asleep to eat every three hours and now she describes
her life as spending her entire day g-tube feeding Anna. Heather‘s commitment as
Anna‘s mother to be able to provide her with sufficient calories to grow is commendable.
She has to dedicate the majority of her day to Anna‘s eating in the effort to support
Anna‘s growth and development even though often feeling unsuccessful. Heather feels

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as though her life is run by food and describes her and Anna as being prisoners in their
own home as they are consumed by feeding.
Pumping as Mothering Occupation
Many of the mothers in the study did talk about things they could do for their
child versus oral feeding. Six out of the seven mothers talked about the importance of
breast feeding. They all either attempted to breast feed or pumped in the absence of
being able to successfully breast feed. There is a wealth of literature surrounding breast
feeding and pumping. However, much of literature focuses on the pragmatics (Apple,
1981; Auerbach & Walker, 1994; Bernaix, Schmidt, Jamerson, Seiter, & Smith, 2006). In
my research, the mothers spoke of pumping in a more relational manner. They described
pumping as the next best thing they could do for their babies even when the babies were
getting the milk by the g-tube. Pumping may also be considered a culturally familiar
occupation that mothers were able to assume. In my research, I considered pumping a
meaningful occupation for mothers to provide nutrition to their infants in the absence of
being able to bottle or breast feed them.
In the story below, Heather begins to describe the role pumping fulfilled for her
when Anna was still in the NICU.
Heather: Umm, it was really hard. Umm, you can only really talk to them through
the portholes in the isolets. And sing, you know, sing -- sing to them a little bit.
But, umm, there isn't much interaction that you can be doing. Umm, and for the
most part during those four weeks, I just read -- I just took a book and read. And,
umm, and the only thing that I felt that I could be doing for her was pumping.
And so, I pumped the milk for her. And, you know, that -- that made it a little
easier. But during that -- those four weeks, there's nothing you can really do.

Karla: So, tell me more about the pumping.

Heather: Every three hours, umm, you know, to get the milk supply up. And,
umm, I had trouble, you know, with my milk supply. And it finally came in,

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umm, and then I just pumped and pumped and pumped. And I was recovering
from a C-section, so it was really exhausting. But, umm, I stored the milk. Umm,
and umm, --

Karla: Oooh. (to Anna as she has handed me her toy)

Heather: You know. I did what I needed to do. It was -- I felt like it was one of
the only things that I could be doing at the time. And then, after a while, it just --
once -- once, uhh, she was a -- you know, more awake, and I could hold her and
stuff, I just got annoyed every time I had to go pump.

The important role of pumping for Heather can be seen in this story. Pumping is
something she is able to do for Anna and I would suggest a way to be connected to her
infant. Heather mentions at the end of her story, becoming disinterested in pumping
when she is actually able to physical engage more with her infant. Mothers told stories
about going into the mother‘s room to pump, for some even being a moment of refuge.
Mothers were able to relax for a moment with privacy. However, the pumping in some
ways was viewed as more of a burden once they were able to interact with their child in a
more dynamic manner. Mothers had been waiting to be able to resume more typical early
mothering occupations, so when they were given that opportunity, it was difficult for
them to spend time away from their infant. Mothers were anxious to resume early
mothering occupations such holding, touching, and possibly even starting to feed their
infants. Pumping was fulfilling a need for mothers, but was overpowered by actually
being able to engage with their child once it was possible. Many of the mothers
continued to pump after similar kinds of transitions, but I would suggest the meaning
shifted such as demonstrated through Akemi‘s story.
Akemi felt very strongly about pumping for her son, Micah. In stories regarding
her son who had autism and cancer and with her daughter who had autism, she described

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pumping as the one thing that ―no one else could do for them‖. In the following story,
Akemi describes her conflict around pumping during one of Micah‘s many
hospitalizations and the multiple meanings it assumed for her.
Akemi: I didn‘t like it. I – like, you know, it took time and it‘s kind of like, you
could be doing something else, you know, and – but, in fact, I was, you know, I
was doing it in the mother‘s room, so I used the hospital pump, because I didn‘t
want to bring my own pump and do it in the room, you know. It‘s like kind of
noisy, so, it was kind of like my down time too. In fact, I was reading book – only
that time, you know, because I couldn‘t do it – because I wasn‘t with him, so I
kind of read book in there.

Karla: Was the – so, just to see if I‘m understanding – then the pumping was a
time where you‘d have a little personal down time.

Akemi: Yes, yes. (laughing) But I – but I didn‘t like to go do it, you know. Like I
said, it wasn‘t that comfortable, and – yeah. And I wanted to be, you know, with
him or whatever.

This story demonstrates the multiple meanings that pumping assumed for Akemi.
I interpret that it was important to Akemi to provide Micah with nutrition, but does not
like to be physically separated from him. I would suggest she even feels guilty about
admitting to having down time, as she quickly reassures me she doesn‘t like it.
Overall, I was surprised by the number of stories mothers told about pumping. It
appears that pumping assumed multiple meanings for mothers depending on the context
and timing in which it occurred. The pumping was initially a mothering occupation that
helped ease the loss of not being able to feed their child. It also served as a means of
connecting to their infant. When children are born with health challenges, the ways that
mothers are able to interact with them are more limited. Many of the mothers talked
about pumping as being the ―next best thing‖ to actually being able to feed their child.
The mothers were able to provide the infants the nutrition simply by a different means.

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This topic would lend to further research to maximize how to support mothers through
pumping in this very difficult time. I would suggest the conflict mothers felt regarding
leaving their infants during hospitalizations should further be examined to explore the
possibility of constructing the environment, so mothers don‘t have to choose between
being with their infants and pumping.
Providing Nourishment through the G-tube
Another way mothers were able to ―do‖ for their child with feeding challenges
was to provide them with nourishment other than commercial formula. Five out of seven
mothers had put something besides formula and water, medications or supplements
through the g-tube. One mother, Nellie, who had not put anything else in the g-tube had
actually inquired with her gastrointestinal doctor about it and he told her that it wasn‘t
something that could be done. She questioned him, but in the end decided she
understood his view point. Pam was the other mother who only put formula in Isaiah‘s g-
tube due to his multiple allergies. The other mothers put a wide range of blended solids
and liquids in the g-tubes. The children‘s gastrointestinal doctors were not necessarily
supportive of it, but tolerated the mothers‘ choices. Physicians have greater control over
the calories and the composition that are provided to the children when a commercial
formula is used. I would suggest a parallel may seen with putting blenderized food and
liquid in the g-tube versus formula to the historical shifting away from breast feeding to
commercial based formulas as feeding and mothering became increasingly medicalized
(Apple, 1981). The mothers in my study expressed their physician‘s tolerance to the
transition of blended foods versus acceptance. Mothers reported the physicians didn‘t
understand why a mother would go through the work of using a blenderized diet when

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commercial formulas were available. According to the mothers, the majority of the
physicians took a wait and see approach or the mother implemented the new diet without
informing the physician.
Blenderized diets are becoming increasingly popular with mothers as evidenced
by the growing number of online support groups supporting mothers in attempting such
diets. Health professionals now have to respond to the mothers‘ demands and interests
in the new diets. There is an online Yahoo group whose sole purpose is related to
supporting parents in implementing blenderized diets. Klein and Evans-Morris (2007)
also recently published a book not only to provide families with the pragmatics of
implementing such a diet, but also acknowledging blenderized diets may serve additional
purpose for mothers and children. While developing their book, the authors, a speech
pathologist and occupational therapist, sought out opinions and feedback from parents.
They found ―many parents report that preparing homemade blended formulas gives them
more control in their children‘s growth and feeding, and allows them to nurture their
tube-fed children with food as they would orally fed children‖ (Dunn Klein & Evans-
Morris, 2007, p. 1). I find the idea of providing children with a blenderized diet as a
particularly interesting finding. There are a number of resources to support mothers
independently exploring such a diet for their often medically fragile or chronically ill
child. However, none of the resources have a medical base and I would argue in some
ways go against the medical model. Mothers did express similar thoughts as proposed by
Dunn Klein and Evans-Morris when considering the rational for providing the child such
a diet.

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Jane tells the story of their first exploration of attempting a blenderized diet for
her son. She describes that she was initially motivated to explore it when children in
Beijing, China were becoming ill with the formula that was tainted with melamine.
Jane:(Continues to try to say the name-melamine) I can‘t remember what it is
called. Umm, how it was like in all these formulas in China and all these kids
were getting sick and stuff. I was kind of thinking, oh my gosh, it‘s like, I, I, I…
And I look at the formula ingredients and like I can‘t even pronounce any of
them. Umm, so it kind of made me think, god, what are we giving him, you
know, so um, we talked to GI. And no one is really crazy about it, doctors aren‘t
like yah, good idea. Yah, you know. They really like the formula, I think
because it is very controlled. They know exactly what he is getting, umm, GI was
like yah, we have some families that do that, whatever, if you want to do that, you
know, fine. Try it. You know. But they weren‘t like, yah, good idea. Umm, but
from this blenderized diet group, a lot of the parents say their kids gain more
weight, they eat more by mouth, they don‘t spit up as much, it just seems normal,
it just seems like, I couldn‘t imagine like, living on Ensure. Like with no fresh
fruit or no fresh produce or anything. It would just be. Like how would you be
healthy if you just had, this like…

Karla: Formula

Jane: Yah, yah, So um, when I first mentioned it Mark, cause the blender that you
need, you need to use a really good blender or it will clog the hose. Cause it has
to be super thin and for it to go through the pump. It needs to be like liquid. It
needs to be the same as the formula. So, I tried it with my blender and of course
it didn‘t work. So, everyone has the same one. And you can get one with a
medical discount from a prescription from your doctor and um, I was like. It
ended up being like 423 dollars. But on retail, they are like six or seven hundred
dollars.

Karla: Wow

Jane: And Mark was like (changing voice to imitate Mark yelling in a quiet
manner) That‘s nuts, no way are we spending that much on a blender, that‘s
crazy, you know. (Laughter from both) At first, he was just like no way and then
I was like, (changing voice) Oh, they make Margaritas, you know they ma…
(Both laugh loudly) and slowly he kind of started accepting the idea. (Jane: still
laughing as she talks)

Jane‘s story described the varying elements that went into her construction of
being able to provide Braden with a blenderized diet for his g-tube starting with

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incorporating information that was being provided in popular culture to initiate the
process. Braden had significant vomiting and gastrointestinal challenges, so she
appropriately discussed it her physician. The physician didn‘t think the formula change
was necessary, but agreed as long as Braden continued to gain weight. She then seeks
out support through other parents online as it is not available in the myriad of
professionals that see Braden only to encounter opposition within her home social
structure, her husband. The blender Jane deems was necessary is quite expensive,
particularly for this family. She strategized how to persuade her husband to purchase the
blender and in the end the blender becomes their Christmas present to each other. I am
struck by the layering that occurs around Jane being able to provide her son with the food
of her choice for nourishment, which arguably is her right as his mother. It once again
speaks to the work mothers must go through to feed their children in ways that are
meaningful to them.

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Chapter 8: Conclusion
In Chapter 4, I provided a summary and analysis of individual themes for the
mothers and their children involved in the study. In Chapters 5, 6, and 7, I discussed a
number of findings across the mothers‘ stories such as the gains and unanticipated
challenges associated with the g-tube, a new way of thinking about medicalized
mothering and unique dimensions of mothering children with g-tubes. In the conclusion,
limitations, clinical implications, and future research will be discussed. I will also
describe my personal process of reflexivity.
Personal Reflections
My research topic was particularly meaningful for me. As I shared in Chapter 1,
my son was born prematurely under difficult circumstances. I had the experience of
mothering an infant in the NICU and a child with continued health and medical needs. I
have also worked with families with children with g-tubes for over ten years and am
highly invested in providing them quality care. In addition, I found it interesting to
engage with these women and their children from a researcher stance, a new experience
for me.
My past experiences supported my engagement with these women and helped me
to understand the data better. I had an element of empathy that appeared to be reflected
or understood in the mothers. I also understood the topic in some ways from a personal
and in other ways from a professional stance that gave me a sense a familiarity. The
understanding shaped my follow up questions and ways I elicited stories. Overall, my
previous experiences benefited my interactions with the mothers, data collection and
interpretation. However, it became more complicated than anticipated to partition off

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aspects from my personal history. For example, many of the mothers asked me questions
throughout the interviews and wanted to know if I was a mother or details about me as a
mother. One mother in particular was very interested in learning more about me. During
the first interview with her, I reassured her that I would be willing share aspects of my
life at the close of the final interview as this was truly about her mothering experiences.
When I did briefly share information about my son, she thanked me and with a big smile
said, ―I knew it, I knew you had a story‖. My professional experience also came into
play as many of the women knew that I was an occupational therapist, as they had been
told by the individuals who had referred them to me for the study. Initially, a couple of
the mothers requested further information from me regarding their current occupational
therapy services for their child or specific questions about feeding. I was very conscious
about maintaining my research stance to not comprise my data collection.
My prior experiences helped me to further understand and interpret the data.
However, I was very cognizant as to when to contain my personal story as to not interfere
with data collection. My primary way of managing this task was to frequently journal
about the position that I was in. I took care in consciously reflecting on the process. At
times, I would simply journal about an experience from a profession stance. For
example, I had concerns regarding one of the children‘s medical care and therapy. From
a professional stance, I was inclined to gather more clinical information to determine if
there was a more effective way for him to be eating solids or if he should be eating at all
by mouth. I wanted to help them explore ways to maintain his oral eating while
protecting his lungs and heath. However, I knew that was not my role with the family.
The journaling helped to further delineate the line between researcher and clinician.

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Journaling simply about the clinical aspects allowed me to explore them with myself
versus attempting to simply ignore them. The journal also allowed me the opportunity to
think about my personal experience and how this process was potentially helping me
make sense of my own story. I was also in constant communication with my advisor
frequently addressing the different worlds that I was negotiating from the stance of
mother, clinical expert, and researcher. My advisor also supported me by assisting with
how to answer questions that many of the mothers asked. The feedback and support was
invaluable in maintaining my researcher position.
As discussed in Chapter 3, I contacted directors and therapists from therapy
clinics to seek out about possible participants. I did receive a number of referrals and
was able to gather my research participants relatively quickly. One of the things that
struck me was the acute episodes of illness the children experienced while I was
collecting data. A number of interviews needed to be rescheduled, postponed or occurred
while a mother was caring for an ill child. Some of the children had illness that I would
consider to be related to their primary diagnosis while others seemed to be experiencing
more typical childhood illnesses. I question whether it was a coincidence or possibly
even as simple as the time of the year when illness is more prevalent. Another suggestion
may be there is a complexity around the illness experience that is not adequately
addressed in the literature or everyday experiences of these families. The medical and
therapy worlds continue to provide fragmented services for these children and families
that don‘t allow for the complexity of these children‘s illness to fully be revealed.
The mothers in my study shared a wide range of stories with me throughout the
data collection. Many of the stories conveyed a sort of tragedy for them and their

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families. During the interviews, the majority of the mothers expressed intense emotion
while telling their most meaningful stories. The narrative interview structure was very
evocative in terms of emotionality. I have struggled with how to balance the great
tragedy with the many other aspects of their stories, including the family strengths,
tenacity, persistence, hope, and happiness that also need to be conveyed. As I have
gotten to know my data and the mothers‘ personal experiences, I can feel the weight of
their emotional pain; at times it can be overwhelming, making it even difficult to write
their stories. However, mothers also expressed a genuine joy in being with their children
along with a variety of perceived benefits of their specific situations. I felt a great sense
of responsibility to adequately represent and interpret these women‘s stories as they have
privileged me by sharing them.
Implications
Complications of the g-tube. There is a fair amount of literature surrounding
complications of the g-tube insertion. However, the majority of that literature as
discussed in Chapter 2 focuses on the complications around the pragmatics, which I
would suggest, is what the physicians are trained for and more comfortable dealing with.
My data supports there is an entire other side of complications associated with g-tube
insertion that is not appropriately addressed and defined in the literature. I am referring
to challenges such as the continued struggle for weight gain, tolerance of feedings, and
overall child discomfort after the g-tube is inserted. Even when taking these ―other‖
complications into consideration, a g-tube may still be the right choice for many children.
However, preparing families that a g-tube placement may be essential, but possibly not
completely resolve the primary reason for insertion would support mothers in further

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preparedness and understanding. My data would suggest that once the g-tube is inserted
the children are not necessarily followed by their gastrointestinal doctors or it is
perceived that ―the problem‖ has been solved even if they continued to be followed. A
future area of research may be to further examine the other kinds of complications or
problems that continue with many children after the g-tube placement. The
complications are not necessarily ones that can be seen in the office during a follow
appointment. By obtaining information on these ―other‖ kinds of complications, parents
and physicians may have more information before the g-tube is placed to guide their
decision making and provide support services for the child and family.
I was struck by the finding in my research indicating the extremely limited
amount of support and training families were given when their children received the g-
tube. My findings corroborated with the sparse information provided on this topic in the
literature (Kohlen, Beier, & Danzer, 2000). In my study, the limited support and training
initially resulted in emergency room visits and extra physician appointments for many of
the families. Once the families became knowledgeable and confident with the care that
previously required medical intervention, they were now able to perform similar tasks at
home. I would suggest by providing an initial level of training when children receive
their g-tubes with potentially brief follow-up would not only provide decreased stress,
time, and trauma to children and mothers, but also would be highly cost effective for the
medical system.
Fragmentation of care. Another finding that has implications for practice and
research is the continued fragmentation of care these families experience in the medical
and therapy worlds. Services appear disconnected with little consideration for the entire

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child and family. The child is partitioned into sections with each discipline or therapy
dealing with their small piece. As I have referenced in previous sections, the children
have chronic illness and fragility that appears to be overlooked in the context of the
individual disciplines. Akemi has many stories illustrating the fragmentation of care they
experience. Through her stories, she repeatedly expressed frustration with the team
members for not being able to view her son as a whole child versus from their own
individual discipline‘s lens. Her stories convey specifically how the path to Micah‘s g-
tube was filled with lack of communication and discipline driven decisions by his
therapist and physicians. Akemi shared the following story around decision making
process of Micah receiving his g-tube.
Akemi: About, oh, did he get enough calories and did he get opportunity to eat by
mouth, because he was getting the….you know, the feeding therapy at home and
this person strongly disagreed with the G-tube, you know, placement. We worked
with him…last, last December, last December '07. So, when he heard about the
doctor‘s recommendation to put the G-tube and he said like ‘no, like no, no,’ but
you know what, I said I couldn‘t handle this anymore. When he got sick and
being in the hospital, he was very, very sick and I just couldn‘t, I just couldn't stop
thinking that he would die, you know, from line infection or something. With the
-- especially the last two times, he was allergic to the IV medication. It was so
severe. You know what I mean? It‘s like are the people in Micah‘s life, you know,
that either they are this therapist, that therapist, you know, this specialty doctor,
that doctor. They tend to look at the scope of work, this part of, you know, the
part of him that‘s related to him, but not look at him as a whole person, you
know?

Karla: Um-mm

Akemi: And yeah, sometimes I‘m so sick of like the therapist and doctors, you
know? They put a lot of stress on me. I feel like, okay, everyone wants him to do
a lot in, you know, their direction. At one point, everybody wanted to increase
hours, like okay, let‘s do twice-a-week speech, twice-a-week, you know, feeding.
Let‘s add more ABA hours. Something like that, you know, because they look at
their thing, you know, like -- you know what I‘m saying?

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After intense medical debate, his medical team had finally decided that it was
time for Micah to get his g-tube, but the occupational therapist who had been working
with Micah in the home with oral feeding was against it. The home based therapist felt
Micah has a greater probability of eating by mouth in the near future if he remained on
the TPN. Akemi‘s story not only emphasized the fragmentation of care, but also what the
fragmented care means to her as a mother. She seems to have to prioritize the varying
opinions that she receives in order to make her own decision. This situation is
particularly difficult for Akemi because she has a strong relationship with the therapist as
they have been coming into her home for a year. However, I can hear her struggle as she
is also concerned about Micah and how continuing on the TPN may negatively impact his
overall health status. Akemi says Micah‘s team puts a lot of stress on her as it appears
that they all are in competition for her and Micah‘s time.
Children with gastrostomy tubes are complicated, often requiring multiple
physicians, therapists and types of intervention. However, the family needs have to be
taken into consideration and the child as a whole. As Akemi‘s story suggests, teams need
to be created around these children to better support the family‘s needs versus dissecting
the children into pieces and assigning relevant therapists. The fragmentation of care adds
to the complicated worlds a mother must negotiate to adequately care for her child. The
decisions professionals and parents are making for their children are to support their basic
health and if the child‘s interventionists and physicians are not making those
recommendations as a cohesive team the child‘s health may be compromised. My
research serves as a platform to support further research into providing integrated teams
to care for children with medical fragility and special health care needs.

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Co-occupations. I had anticipated that as a part of my research I would begin to
rethink the definitions and explanations of co-occupations presented in the occupational
science literature. My initial thoughts were the ideas around co-occupations were too
limiting, not adequately describing what occurs between a mother and a child during
intimate activities such as feeding. As I began to analyze my data, I realized that even
my own thinking had been too constricted and the process of describing the interactions
between a mother and a child and the ever-changing consequences of that interaction will
require increased reflection.
Through my research, interactions between a mother and a child were co-
constructed in a dynamic manner, involving reciprocal shaping of one and others
behaviors and ideas. The reciprocity was simple, yet complicated. With the knowledged
gained from the research participants, the construct of co-occupations should be
reconsidered and expanded. Discourse should include further examining the fluidity of
engagment and shaping of the co-participants behaviors and ideas. I would agree with
previous literature (Dunlea, 1996; Olson, 2004), discussing feeding as what they
described as a ―co-occupation‖, but would argue their discussion as limited and not fully
encompassing the intricacies that occur between a mother and her child during feeding or
other occupations. I would suggest that a closer examination of the mothers‘ stories in
my research would support further theoretical disscussion and continued research.
Feeding therapy was good, I am just not sure if it helped. All of the children
in the study had or currently were attending feeding therapy. Mothers dutifully took their
children to the weekly feeding intervention. None of the mothers had anything negative
to say about the range of types of intervention these children were receiving. The

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mothers often said the therapy experience were ―good,‖ but often expressed a lack of
progress or disconnect that occurred during the therapy session. Some of the mothers
were required to be in the room because of the child‘s special health care needs, but many
others were recommended to not participate, sometimes even if they were in the room.
As discussed in Sophia and Erek‘s story, Sophia took Erek to multiple hours of
therapy a week, but when describing his achievements or progress, she believes it simply
happens or in her words ―just clicks‖. Sophia was able to clearly provide the rational for
why she took Erek to therapy, why she needed to be in the therapy room, but also why
she would transition out as soon as Erek no longer required her for suctioning needs. I
questioned Sophia as to if she thought Erek would do better when she wasn‘t present.
She didn‘t think so, but responded that‘s what the mothers do and the therapists
encourage, which Sophia was comfortable with doing. Sophia tells a story of trying to
replicate the feeding therapy sessions at home.
Sophia: Um, well, I -- you know, whenever they show me over there, I try to
always repeat it at -- at home. So, they say okay, give him crackers and show him
how to bite, so I do that to him. I sit with him and I give him cracker, and I keep
the cracker and I say, okay, that's-that's-that's the way to crunch it, that's the way
to eat it, you know. And he stares at me for about 20 minutes and then I say, okay,
that's it.

Karla: He's like, that's it.

Sophia: Yeah. He doesn't really want to do it. He's not interested.

Sophia clearly is invested in feeding therapy as she takes Erek to the sessions and
then attempts to do the intervention at home, but does not necessarily appear to feel that it
is beneficial for him. Sophia describes Erek as uninterested and then when he did eat, it
―just clicked,‖ apparently having little to do with his therapy experience.

240

I have to question why mothers would take time in their already complicated
schedules to participate in a therapy that they don‘t feel will necessarily benefit their
children. I would argue that it is something else that they are able to physically ―do‖ to
support their child‘s potential eating even if they didn‘t it would be helpful. The
intervention is not going to harm the child, so why not try. By not taking the child to
therapy, the mothers would portray a sense of hopelessness and possibly be viewed as
non-compliant.
Two other interpretations may also be explored, the therapy is inappropriate or the
therapy provision is ineffective. The children in the study have chronic illness with
reoccurring medical exacerbations that will interfere with their ability to eat by mouth.
Feeding therapy needs to be examined within the context of the whole child. The child‘s
health status should serve as the primary indicator for current level of intervention and
goals establishment. However, within the current system of intervention, therapists often
work in isolation of other team members, which limits their ability to consider the
complexities these children present. Also within the current form of funding for services,
there is limited flexibility in varying the child‘s level of intensity of intervention based on
their changing health care needs; meaning only providing more intense therapy, such as
weekly intervention, when the child is in a more optimal state. This type of flexibility
would be incredibly difficult for the therapy clinics and funding sources to provide.
The other interpretation for the disconnect and lack of the progress may be the way in
which therapy is administered. The research reviewed and themes that emerged focus on
feeding as a dyadic experience between a mother or caregiver and her child. Only one of
the interventionists reportedly incorporated the mother as an integral part of the therapy

241

administration. The other mothers were asked to provide follow through at home, but not
participate during therapy. This type of intervention may be consider to further support
mothers‘ feelings of inadequacy at feeding their children and create limited investment in
the feeding therapy process. Both of these interpretations have tremendous implications
for therapy administration and required further research and investigation.
Limitations
Although it is clear that the data is very rich and is able to provide certain
insights, the data was collected within a diverse group of families with young children
with gastrostomy tubes. The diversity and sample size should be considered when
considering the applicability of the data. The data is applicable due to its richness, but in
no way completely describes all the complexities associated with children with g-tubes
nor should it simply be applied to other families with g-tubes without thoughtful
consideration.
A limitation, with implications for future research, is that the family‘s culture and
ethnicity was not controlled for in this study. I did have a sample of maximum variation.
I was fortunate in one way to get a highly diverse group. My mothers were from
Germany, Poland, Taiwan, California, and one mother was an Orthodox Jew and another
one was African American. There are multiple works that indicate feeding and family
practices are culturally situated (Apple, 1981; Coll, Surrey, & Weingarten, 1998;
DeVault, 1991; Garro, 2000; Gillis, 1996; Harkness & Super, 2000). Within the context
of this research, culture was considered and interpreted within the individual families.
However, I did have two families from Taiwan with both mothers being in the United
States for about nine years. The mothers and families were very different. The mothers

242

appeared to grow up in very different situations in Taiwan, had different kinds of
occupations, had different numbers of children in the house, their children acquired the g-
tubes under different contexts and currently were in contrasting socio-economic
situations. However, both mothers situated the g-tube within their cultural context in a
different way than the other five mothers. The two mothers from Taiwan expressed
distinct similarities in talking about what the g-tube meant to them as a member of the
Taiwanese community and to their family. Both women brought up topics of shame
associated with having child with special needs, especially for their parents and in-laws.
Interestingly both women also talked about the g-tube disrupting body integrity in a way
different than the other women. Both women were concerned about adding another
physical ―hole‖ to the body of their children.
While these similarities were striking, they were drawn upon with two women
from a group of only seven. However, it was a strong similarity, which when situated in
research done around the cultural influences on feeding and family practice makes sense.
I was not able to find any research specifically on the cultural implications of a g-tube.
Further research into the cultural relevancy of g-tubes and associated feeding challenges
is warranted.
The G-Tube as Situated within a Context of Chronic Illness and Medical Fragility
When choosing to focus my research on mothers with children with g-tubes, I was
not naïve to the fact that children who require g-tubes often would be deemed as
chronically ill or medically fragile. I knew that aspect of the children‘s lives would be
incorporated into their stories, but I hoped to focus on the day to day stories surrounding
feeding and g-tubes. While I was clearly able to get sufficient information surrounding

243

some of my original questions, I quickly learned how important the mothers‘ stories
relating to their children‘s illness were going to be. Mothers wanted to tell me their
child‘s illness history. The g-tube was really more of a symptom of the illness versus a
focal point even though it impacted the child‘s daily care. For all of these children and
families, the g-tube was situated within a context of illness and fragility. The g-tube
often became an accessory to the illness or the result of a long struggle. The g-tube and
associated occupations were what families, mothers, and children were dealing with on
an everyday basis, but the illness story behind it, was what had shaped the g-tubes daily
meaning.
The g-tube was very much its own entity that was easy to see, identify and had its
own set of associated technical procedures. However, in actually lives it had a much
more complicated embedded phenomenon that could be perceived to possibly have more
to do with mothering than about feeding per se. The g-tube was required for these
children to receive calories and was a central part of their daily lives, but the family‘s
stories also reflect that they are in a broader community of chronic illness and other
health care needs. The mothers and children in my study were not able to firmly be
situated in any one discourse. The mothers‘ discourses must cross into areas of feeding,
chronic illness, technology dependency, and mothering. The challenges these mothers
and children face were complicated as well by the fact that many of the things they were
dealing with were dimensions of daily life. Families must negotiate feeding experiences
multiple times on a daily basis.
Heather‘s daughter in many ways exemplifies the intricacy and embeddedness of
the g-tube. Anna continued to struggle with the same health difficulties that were evident

244

prior to the insertion of the g-tube. Heather, it seemed felt betrayed by the medical
community as many steps of Anna‘s life have come with unanticipated challenges that
began before Anna was even born, which were further convoluted by Heather‘s own
illness trajectory. Heather and Anna‘s medical journey had now been complicated by
having to integrate a piece of equipment into their daily lives to support Anna‘s survival
that Heather felt the need to hide from her family and friends. Heather closed one of her
interviews with the story below on the impact of the g-tube on her and Anna‘s life.
Heather: Um, I don't know…. You know, I think we discussed a lot of the
challenges involved, you know, with having a G tube baby. Um, You know, you
just don't take -- you don't really realize how it's really going to change, you
know. Every -- everything you do, your day-to-day living, your day-to-day
activities change…………And it's a big challenge. You know, it was very
challenging feeding her before the G tube and it remains very challenging to feed
her now and that's just kind of the gist of it. Everything is a challenge and
everything is a struggle and some days luckily are better than others and you just
hope for every morning to be one of those good days and if it's not, you just hope
well tomorrow is going to be a better day.

An occupational science perspective gave me entry into examining the day to day
life and multiple meanings associated with mothering a child with a gastrostomy tube.
Using this lens allowed me to be open to complexities revealed when collecting data
regarding this topic that have not yet been seen in the literature. The data provides a
compelling view of the dyadic nature of a g-tube. However, the current descriptions and
definitions in the literature of co-occupations do not adequately describe what I observed
and heard through the mothers‘ stories. The richness of these stories demonstrated the
extensive work and care that mothers do for their children with g-tubes.

245

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Asset Metadata

Creator Ausderau, Karla K. (author)

Core Title Mothers' experiences with feeding children with a gastrostomy tube: recontextualizing mothers' daily occupations

Contributor Electronically uploaded by the author (provenance)

School School of Dentistry

Degree Doctor of Philosophy

Degree Program Occupational Science

Publication Date 11/25/2009

Defense Date 05/12/2009

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag Child,chronic illness,daily life,feeding,gastrostomy tube,g-tube,mother,OAI-PMH Harvest,occupation,Occupational therapy

Language English

Advisor Lawlor, Mary C. (committee chair), Frank, Gelya (committee member), Neville-Jan, Ann (committee member), Turman, Jack, Jr. (committee member)

Creator Email bama@triwest.net,karlaausderau@hotmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-m2769

Unique identifier UC1203060

Identifier etd-Ausderau-3096 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-281640 (legacy record id),usctheses-m2769 (legacy record id)

Legacy Identifier etd-Ausderau-3096.pdf

Dmrecord 281640

Document Type Dissertation

Rights Ausderau, Karla K.

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Repository Name Libraries, University of Southern California

Repository Location Los Angeles, California

Repository Email uscdl@usc.edu

Abstract (if available)

Abstract Background: One of the most intimate aspects of mothering is feeding a child. A change occurs in mothering occupations when a gastrostomy tube is placed in a child and the methods of feeding are altered. Frequently mothers feel as if they have failed when their children receive a gastrostomy tube. The majority of literature regarding children with g-tubes comes from a bio-medical perspective, focusing on the medical and technology aspects of a g-tube. Limited information can be found in the literature regarding the socio-cultural dimensions, mothering, and mother-child interactional aspects of parenting a child with a g-tube. This research proposes to fill a gap in the current literature surrounding mothering, feeding, and gastrostomies.