Reprinted from July-September 1997 issue
Carol Oleksiak, Thomas M. Horner, Ph.D.
Intervention: Carol Oleksiak
Terry was referred to an infant mental health program located in an urban community because a children’s hospital social worker was concerned about his poor weight gain. Although he weighed 6 pounds, 7 ounces when he was born at 33 weeks, he had gained only 5 pounds during the next six months. Terry was Jane’s fifth child. She reported that she had previously come to the hospital twice because her baby was throwing up after each feeding, and eventually had stopped eating. She tried a third time to get help for her baby at her local medical clinic, which responded by having Terry hospitalized. During his hospital stay he began to eat and gain, and he had hernia surgery. He was discharged after one week and the hospital social worker referred him to our program for home-based services.
As I entered this family’s home a few days after Terry was released from the hospital, I reminded myself of this mother’s many attempts to get help for her baby. It helped me to remember the IMH assumption that even in the face of difficulty the family is struggling toward health. The family was large: a single mother and her five children under the age of eight.
A slight, timid mother opened the door to the home, a lower flat near a busy airport. The rooms were sparsely furnished. Terry’s next sibling, a two-year-old boy, was not wearing diapers even though he was not yet potty-trained. There were only two beds; Terry’s mother, Jane, stated that she and Terry slept on the couch. There was very little evidence of books or toys. The baby appeared very thin and fragile, his belly distended. He was hypervigilant and watchful. He did not sit alone and often slid to one side when he was propped in a sitting position. However, he seemed curious about a toy that I had brought with me and, when his mother offered it to him, he reached for it, transferring it from one hand to the other. His 25-year-old mother quietly sat on the couch.
As I watched them, I wondered how I could begin to help them. She was so shut down and he was so frail. She finally spoke and said, “I think he has a fever.” She was worried because he had just had surgery; I was worried, too. There was no thermometer or Tylenol, so I went to the corner store and purchased some infant Tylenol drops for her. When I returned, she was giving her baby water to keep him from dehydrating. When it was time for me to go, I said, “I’ll be back tomorrow at noon to see how you and the baby are doing.”
When I arrived the next day, Jane was waiting for me at the window. I understood her wish to have things be better for her baby and her other children, but it was clear that she would need a great deal of support. Jane was unable to accomplish the most basic caregiving tasks.
I talked with her about becoming a team, that together we would try to understand why her baby was having trouble gaining weight.
She was able to manage a slight smile and nodded her head.
The next day I took the whole family to WIC to get formula for Terry. It was a difficult visit. The appointment took a long time; the children had not eaten breakfast and were hungry. I went next door to the grocery store and bought a bag of apples. It was at this appointment that I noticed that Terry seemed to avert his gaze when I tried to talk to him. I thought it was important to ask Jane if this was something that she had also noticed. She nodded her head in agreement. As a team, we would try to understand Terry’s cues and behaviors. She smiled but said very little.
I felt worried about Terry’s health and scared about being able to really help this family. I watched Jane tease Terry with his bottle — offering it and then pulling it away — understanding how difficult it was for her to give him what he needed at that moment. I acknowledged her struggle, saying, “This must be so hard for you.” I repeated this many times during our work together. With recognition of her struggles, Jane began to respond more consistently to her baby.
Two months later, at eight months old, Terry weighed 14 pounds, 6 ounces, a gain of three pounds! During this time I transported Jane and her children to all their pediatric appointments. I advocated for Jane and her children to be seen by the same pediatrician every time. We added Dr. B. to our “team.” Together, we provided the family with consistent medical care.
I struggled. I had so many questions. What got in the way of Jane feeding her baby? What made this baby unable to keep his formula down? Why did he vomit after almost every feeding? I observed Jane teasing the baby with the bottle and withholding his toys during play. When Terry and his mother were together, he often seemed more interested in other things. It was hard at times for Jane to get her baby to play with her. We used videotapes to understand how she and Terry were interacting with each other.
In the time that we worked together, I spoke often for the baby as well as for Jane and her other children. I gave support for the concrete needs of the family, e.g. diapers and formula for the baby, clothes for the children and food when they ran out. I visited at least twice per week, and more often if Jane needed to go to the clinic, WIC, the grocery store, or to visit her family. Jane began to listen to me as I talked about Terry’s development and his cues and his behaviors.
Together we discussed what she thought her baby might be thinking or needing when we observed him. As Jane felt supported and came to trust me, she could respond to her baby’s needs.
At 10 months, Terry was a stronger baby. He crawled, pulled himself up on furniture, and could feed himself. He now weighed 15 pounds and showed interest in playing patty cake, could find hidden objects and liked dropping toys as a game. When Terry’s weight gain slowed, Jane agreed to keep a food chart. After eating, Terry would often cry for more food even though his belly looked very distended. We concluded that he couldn’t tell his mother when he was full. I wondered aloud that if she slowed the pace of his feedings it might allow him to feel full. She gave this a try, with positive results.
By Terry’s first birthday there were still concerns but also some celebrations and pleasures. He was a much happier baby. He began to communicate, using gestures and simple words. He was getting ready to walk, a much sturdier baby who now weighed 17 pounds and 2 ounces!
One hot summer day as we sat on the porch watching the children play and eating the popsicles I had brought, Jane revealed that she had once thought Terry was going to be “slow” and only recently did she feel hopeful about him being “OK.” She felt better because he was beginning to do more things and was more responsive to her. Her baby continued to gain weight and enjoyed eating. As Terry grew more healthy and competent, Jane realized that he would survive and was in turn able to be more affectionate and attentive toward him.
Jane and I worked together on behalf of Terry and her other children for four years. She continues to keep in contact with me. She calls when she has questions and during Terry’s birthday month. Today he is seven years old and doing well in school. There are no significant developmental delays. After a difficult beginning, Jane and Terry have an enduring relationship with one another.
Discussion, Thomas M. Horner, Ph.D.
Terry was referred for infant mental health services when he was 6 months old, an age at which a typical infant weighs 14-15 pounds. The presumption underlying the development of such “typical” infants, though, is that they have lived in ordinary circumstances that are conducive to their physical growth, including weight acquisition. Weight acquisition is a widely used marker of how well physical growth is proceeding in an infant.
At the time of the referral, however, Terry’s circumstances were not ordinary. Experienced practitioners are accustomed to the fact that many preterm infants who are born with low (but not extremely low) gestational weight “catch up.” The point by which the actual “catch-up” will have occurred is usually in the early half of the first year following the expected full-term date. Born significantly preterm, Terry’s weight acquisition had clearly stalled. He entered the hospital, where his eating led to weight gain, and where he also underwent surgery to repair a hernia. Clearly the discharging staff at the hospital were concerned that his gains might not be sustained, and the services of the infant mental health were appropriately sought. Enter Ms. Oleksiak.
Ms. Oleksiak’s depiction of Terry’s living circumstances are familiar enough to those who work with slow weight acquisition in infants. Limited material means, a mother who shoulders alone the care of her children, and who is distracted by so many sociofamilial exigencies, and in whom exists a basic cautiousness about the infant mental health provider’s presence and intentions — all are evident as Ms. Oleksiak makes her initial contact. Yet the story of what follows in Ms. Oleksiak’s brief narrative is also a familiar one: the therapist’s pattern of patient observation and listening, her faith in the mother’s drive to be whole (or well, as one might put it), her implicit recognition in her approach that there is much, much more that is operating in the case than simple “failure to thrive” dynamics, and her impulse to help and assist from a perspective of partnership and alliance (Ms. Oleksiak’s “team” approach) — all are the familiar (though sometimes faith challenging!) elements of effective intervention on behalf of nutritionally compromised infants. She knows that Terry has an eating disorder, which may be only partly related to the possibility that there exists a feeding disorder as well.
Ms. Oleksiak’s entrance into Terry’s and his mother’s lives transformed itself from the start into a growth-augmenting process; operating from within the subjective domains of her clients, she was able to assist, advise, advocate and guide — all in the service of enhanced eating and growth. She aligned her observational stance with Terry’s in order to convey to his mother ideas as to how she might approach his troublesome eating behavior — his tendency to distract himself during eating, his reaction to her seemingly innocent but frustrating teasing with the bottle, and his general tendency to avert his gaze. Such infants frequently defeat their nutritional needs, particularly when their appetitional dynamics have been suppressed by depression, or when they are insufficient to impel nutritionally secure eating.
Ms. Oleksiak’s holistic approach — one that entailed involvement with the family and acting within and throughout the large sphere of events and circumstances surrounding Terry’s eating and weight acquisitions, e.g. visits with the pediatrician to recruit him to the “team” — was essential to his ability to recapture a positively accelerating weight trajectory. Her use of videotapes to bring perspectives to the eating and interactive situation was, perhaps, certainly important to the mother’s permitting Terry a greater share of the lead-taking in eating. It also contributed greatly to the mother’s being able to develop a communication/feeding framework that was more nutrition-augmenting and enhancing than existed at the outset of their work together.
By one year of age, Terry’s weight is said to be still quite low relative to his age-mates, but he is growing and his abilities and interests in social communication are emerging. Ms. Oleksiak is the truly wonderful facilitator of this, being the skilled accompanist, rather than the conductor, of Terry’s developmental performances and his mother’s caretaking performances. She has not taken Terry’s weight alone as an index of her, or his, or his mother’s success at life. She has dealt with an eating disorder of infancy, but she has also enhanced a realm of communicative and psychologically significant contacts he has with his mother and others. She has worked with the relationship not to undo causes of the eating disorder but to assist in their joint dealing with it and to foster its life-enhancing functions.
Ms. Oleksiak remained at or near their sides for four years, a continuity of care that is not only remarkable but truly exemplary. Nearly seven years after entering his life she is aware that Terry is on a secure developmental track. His weight as such is no longer the issue. He has achieved an adjustment and ability to accept life’s challenges, including those that come with being who he is, physically and otherwise.
General comments: a more general consideration on non-organic failure to thrive
Terry is like so many infants who are born into circumstances in which their parents are distracted by many exigencies or collateral demands. These circumstances are so familiar that they frequently form the basis of an intervention that implicitly holds the mother responsible for the infant’s failure to gain weight. No doubt, there are mothers who are neglectful. But there are circumstances where the mother, distracted as she was in Terry’s case, is not responsible for her infant’s failures to gain weight adequately or at a pace that is even roughly commensurate with comparably aged infants. Such mothers often “seem” neglectful, and they are often, due to expediency, classified as such.
As infant mental health specialists we must discipline ourselves not only to set aside presumptions as to the causes of infant failure to thrive, but also to recognize that eating in infancy is not solely a matter of someone’s simply feeding her/him.
I have, over the years, developed a differentiated approach to infant failure to thrive, one that distinguishes between eating and feeding. A truly infant-centered point of view requires that the infant mental health specialist acknowledge that as much as anyone feeds infants, infants eat. From the outset of their lives, eating is an active process governed not only by the appetitional dynamics of the infant, but also by the eating repertoires of behavior infants possess. This repertoire may be “skilled” insofar as the infant has the behavioral capacities to orient to and to “connect with” food, or it may be comparatively “unskilled” insofar as the infant either lacks these capacities or possesses capacities that are impaired either by circumstances or by intrinsic defect.
Although no one would avoid trying to link together the seeming “causes” and “effects” in an infant’s behavioral and affective adjustment, the natural tendency on our parts to construct just such linkages frequently results in our forming premature (and sometimes erroneous) judgments as to what has “gone wrong” when we encounter infants classifiable as failing to thrive. Terry’s aversion to the bottle could have been brought about by early patterns of maternal intrusiveness that “caused” him to learn to avoid the bottle, to avoid eye contact, to avoid social exchange, and the like. But it is also possible (and more likely in my experience) that Terry himself possessed inherent patterns of gaze and social communication that made him less likely to effectively organize his food orienting and food seeking behavior around and within the food-presenting contexts created by his mother.
Why would Terry not eat when food was presented? Is it simply depression, which we know can alter appetitional urges, satisfactions, and mechanics. Or is it the condition that is causing his fever, which we know can alter appetite. Is it perhaps that the food itself is not interesting to him? Is this his mother’s “fault?” Perhaps a case can be made (whether or not correct) that Terry’s mother lacks the ability or disposition to excite his interests, or to present food in ways that satisfy his appetitional (and ultimately, his nutritional) needs. There are such parents. But is it also possible that Terry’s appetitional dynamics are intrinsically different from what we ordinarily encounter in infants who are obviously hungry and who “know what to do” to be fed. It may be that he does not feel the urgencies of hunger in a way that we quite naturally expect them to be in an infant. We are not prepared — until we have allowed such possibilities to exist — to recognize that such infants lack, or seem to lack, part or all of a hunger drive. They do not clamor for, nor do they directly seek, food, sometimes even after rather strikingly long periods of not eating. If such an infant happens to seek food when s/he is hungry, s/he may demonstrate what appears to be a very low threshold of satiety, that is, having only just begun to eat s/he may close off eating as though s/he were now “full.”
At the core of Ms. Olkesiak’s approach to Terry was at least a tacit recognition and acceptance that Terry’s eating was just that, Terry’s eating. In other words, she allowed Terry to be Terry, while offering advice and guidance to his mother that defined her not as the cause of the eating disorder but as the one and only figure who would be instrumental in his thriving — emotionally and nutritionally — the best that he could. Ms. Oleksiak’s approach sought to bring the best from Terry’s mother without ascribing the worst in her. That Ms. Oleksiak’s assistance in these regards led to changes in how Terry’s mother presented food to him, and to changes as to how Terry’s eating was to be augmented, in no way “confirms” that the mother was the “cause” of 1) the eating dynamics themselves, or 2) Terry’s inability to gain weight at a pace commensurate with the growth charts.
In truth, the fact that things improved in the affective-interactive sphere, while Terry continued to gain weight at a pace far below his agemates suggests that the eating/nutritional dynamics that were operative were originally as disconnected from the affective-emotional sphere as they were connected to it.
This is, of course, a point that many infant mental health specialists, and many Protective Services case workers, fail to consider when dealing with infants in nutritional distress associated with failure to gain weight. Fortunately Ms. Oleksiak did not fail to consider it.
This is not to say that there are not instances in which maternal neglect, willful deprivation, or simple incompetent provisions of food, are operative. But it is to say that there are infants whose intrinsic patterns of eating foster an illusion that a given mother — who herself may be depressed, distracted, burdened heavily, or otherwise non-optimal in her interactive and emotionally communicative dynamics — is at fault in the matter of her infant’s failure to gain weight. Recognition of the fact that infants do have unique styles and dynamics of eating, which are in turn connected to their respective and unique appetitional-behavioral dynamics, has caused some in the field to reconsider the use of the term “feeding disorder” to describe such conditions. Increasingly clear is the fact that they are dealing in such cases with eating disorders.
Eating disorders are, after all, disorders of eating, and we must be careful not to quickly ascribe their roots to psychoaffective and socioaffective domains that, while crucially relevant to amelioration, are not necessarily causal.
In most instances, problematic eating is a transient thing, perhaps an offshoot of a serious illness or surgery, or an accompaniment of an illness, say, or the pain of an ear infection, etc. In some instances, however, problematic eating belongs to the endowed behavioral repertoire of the infant. In any of these instances, chronic problematic eating is demoralizing, and the behaviors of parenteral demoralization then arise. When the latter are first encountered by the infant mental health specialist, they form an illusion that the parent is somehow causally inattentive, or causally disruptive, to a point that she is at fault rather than at a loss as to how to overcome the impasse of the infant’s failure to gain weight. Ms. Oleksiak’s case report is a splendid example of where this illusion was not peremptory of her therapeutic assessment, planning, and intervention.
Failure to thrive in infancy is more than simply a challenging disorder. In the past decades, the increased rates of survivorship of extreme preterm birth generally entail to the infant not only an altered course of emerging behavioral dynamics associated with coping with impositions of early extrauterine, but adjustments associated with any number of mechanical and surgical procedures imposed in the service of keeping her/him alive. In these cases infant mental health specialists are increasingly having to confront conditions, including medical, that far exceed the knowledge traditionally directed to determining simply whether or not a given parent is “fit” enough to care for an infant. Moreover, with the widening knowledge that has accumulated in regard to the early primary ego repertoire of infants — including aspects of what is widely called temperament, but including as well aspects of infant-directed attention, social interest, and social communication — infant mental health specialists are faced with having to account more fully and in more detailed fashion for the infant’s own contribution to problems of development or adjustment.
But this is what makes infant mental health truly infant mental health: taking the infant’s point of view, allowing for individual and sometimes perplexing differences between infants, and, in the end, coming to the infant’s assistance in helping a given parent make things go better.
Can there have been a better example of this than Ms. Oleksiak’s account of her work with Terry and his mother?