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Where’s David?
We found David in a pile. Not the kind you might usually think of—not a pile of neighborhood kids having fun, tumbling over each other. We spotted him in a pile of "no-show charts," the daily stack of records for children who don’t make it in for their scheduled doctor’s appointment. At the time (nine years ago), our family practice had what we thought was an adequate system to follow up with these children: Letters were sent to the parents asking them to call and reschedule the missed visit. We then filed the chart, expecting the parent to follow through. However, after receiving no response from some parents, we began to wonder if our system might have holes, if some children were falling through the cracks.
I am a psychotherapist who for nine years has been the faculty behavioralist for the Pennsylvania State University/Good Samaritan Hospital family and community medicine residency program in Lebanon, a city near Harrisburg. I teach interviewing and counseling skills to resident physicians and help them identify and work with patients’ psychosocial issues such as depression, anxiety, domestic violence, addictions, and parenting concerns. One October day in 1993, family physician Carol Baase and I started sorting through a stack of charts, looking for clues in progress notes, growth charts, immunization records, and emergency room visits that might tell us who the no-show children were and why we weren’t seeing them. What first caught our eyes about David’s chart was the number of missed appointments for this eighteen-month-old (David is not his real name). No cancellations, just a lot of no-shows since his last well-child visit at six months. More disturbing was his growth chart. Instead of curving upward to indicate a height and weight increase, David’s growth line swerved south. We called his mother. She said, a little defensively, that David was just fine. We worked the education points—talked about the need to check his weight, to see how he’s doing developmentally, to get him immunized. She agreed to come in. But on the day of his appointment, she didn’t. We called again. We offered more education about the value of well-child appointments, this time in a slightly firmer tone. "OK, OK, I’ll bring him in." Again, she didn’t. The next time we called, we spoke more forcefully: "Mrs. B., if you do not bring David in for his doctor’s appointment, we will be required to call protective services for medical neglect." It ended up taking protective services to physically bring David in. The nurse who undressed and weighed David left the room in tears. A beautiful, blond-haired boy lay silently on the exam table. Weighing only as much as an average six-month-old baby, he appeared ready to accept whatever fate befell him. We could have given him all of his missed immunizations in one fell swoop and he wouldn’t have shed a tear. It takes energy to cry, and he didn’t have that. We hospitalized David that day for failure to thrive, a diagnosis of severe malnutrition that is usually the result of parental abuse or neglect, not primary nutritional problems. David is a prime example of the estimated one million children who are abused or neglected in the United States each year. In 1997 alone 1,000 children died from abuse and neglect; nearly three-quarters were under age four. When you calculate associated spending on health care, mental health, welfare, and crime, child abuse costs more than $94 billion a year. Although states have immunization requirements for children entering school, no law requires that a child be seen for a well-child exam. No regulation can make David’s parents bring him into our office.
In our small community hospital, word of the little child on pediatrics spread quickly. At an age when most toddlers are running and babbling and curious about all that life presents to them, David lay quietly in a crib. With paper-thin skin, dark sunken eyes, and the protruding belly typical of kwashiorkor (a syndrome characterized by severe protein and caloric deficiency), David was unable even to sit without support. Hearing rumors of the child, a hospital administrator made a trip to see him. "My God," he asked, emerging from David’s room, "where did we ever find that baby?" "From family practice," answered a nurse. She should have said, "From a pile of no-show charts." After a few days of added calories, David started responding. Within ten days he gained two pounds. The vacant look we observed on admission began to focus; the blue veins under his thin skin began to fade. Then one day the close attention he had received from the nurses and family physicians paid off. "He smiled," the nurses said. And word of this small step in communication made everyone smile. At the team meeting with the family to discuss foster care, nursing called hospital security to stand watch. We had concerns that the parents, sensing that David would not be going home with them, might try to grab him and run. We held the meeting in the children’s playroom. David’s dad, dressed in a "Born to Raise Hell" T-shirt, took a seat just outside the circle of chairs. A trucker who hauled freight cross-country, Mr. B. never said a word. He slumped in a chair, legs outstretched, arms crossed. I wondered whether the disdain he portrayed was for us or his wife and where those pent-up feelings might go after the meeting. His anger needed to be diffused, but he would not be engaged. I searched his face for what might have been happening at home. Why had he not called for help earlier when he saw David’s health deteriorate? Was it fear? Ignorance? Did he and his wife argue about getting help for David? Or did they simply not care about their son?
The case for medical neglect began to build. The inpatient team detailed the medical history. A nurse read notes from David’s ten-day hospital stay, and a protective services worker reviewed the home visit. David’s mother responded defensively to each detail. A few days before this meeting, during feeding time, I had observed David’s mother screaming at him for dropping a piece of peanut butter and jelly sandwich. The nurse tried to educate the mother. "It’s really OK, Mrs. B.," she said, gently. "All children this age drop food. That’s why we have a linoleum floor, to make it easy to clean up. When he gets a little stronger and his hand coordination is better, he won’t be dropping his food as often." David’s mom just glared at her. After the feeding, I handed David to her and asked her to change his outfit, damp from spilled apple juice. Mrs. B. held him straight out at arms’ length. "What do you want me to do with this child?" she yelled. It was becoming apparent that shouting was her normal tone. Any other child would have cried. David was used to it. Through the playroom window, I could see security pacing, waiting for the decision. Finally it came. The director of protective services made the call. "Mr. and Mrs. B., I’m afraid we have no other choice, for David’s sake, than to place him somewhere for a while where he’ll be safe and get the attention he so badly needs." We sat and waited in what seemed like a loud silence. Mrs. B’s eyes were red and welling up with tears. The director continued, slowly and clearly presenting the mandated actions that would be necessary to get their son back home: weekly mental health counseling, parenting classes, developmental services for David, and supervised visitation rights. A resident physician, letting David’s mother know that it was all right to cry, passed the tissues. "You’re going to take my child away from me?" she asked. (The father’s eyes never left a patch on the floor.) "Where were any of you when I was a child? Where were all of you when my mother locked me in closets? Or when I was starved?" Now the tears, like tiny balls of silver mercury, rolled slowly down her cheeks. David’s mother pointed to a closet. "She kept me in there for days. In the dark. No one ever came. None of you people ever came to save me." Then she raised the sleeve of her shirt. "See these burns?" The circle of participants leaned forward. Patches of muted pink skin ran irregularly down her arm. "My own mother did that! I’ve been a good mother to David. He doesn’t have one mark on him!" David was placed with a foster family for almost a year. A history of the father revealed severe abuse as a child and incarceration as an adult. The parents complied, reluctantly, with the treatment plan, and David eventually returned home. Now ten years old, David has petit mal seizures, severe attention deficit/hyperactivity disorder, speech delay, and hearing loss. He is in special classes for children with learning disabilities. The parents divorced, and the mother has remarried. David, his mother, and his sisters continue to be seen at our office.
To us, David was a gift. His small life taught us that we health care providers need to be concerned not only with the children we see before us, but even more with those we do not. How do we reach the "missing" children to learn if they are in danger or if their parents need our help? Without doubt, some are not being seen because they lack insurance coverage. I am hopeful that universal health care will be forthcoming and provide the assistance these children so desperately need for a decent start in life. But getting children the health care they need involves more than providing financial access. Family dynamics, work schedules, transportation, and cultural and religious beliefs also come into play. In Pennsylvania, for example, the Childhood Immunization Insurance Act mandates that insurance companies cover all childhood vaccinations and immunization booster shots. Yet many insured children remain unprotected. If universal health coverage won’t solve the problem, what about other options? A few states have tried, with mixed results, to improve children’s health care by imposing financial penalties on welfare recipients who do not get their children vaccinated. A demonstration project in Maryland in 1992 fined welfare recipients $25 a month for failing to verify that their preschoolers had received preventive health care services. The project failed to increase vaccination rates. A similar experiment in Georgia threatened loss of welfare benefits for families who did not provide proof of up-to-date immunizations for children under age six. That effort produced some positive outcomes, but the ethics of placing financial penalties on already economically stressed families has prompted questions about such programs. What about mandating care? Legally requiring that children have check-ups six times in the first year of life; again at fifteen and eighteen months; then at two, three, and four years of age (per American Academy of Pediatrics recommendations) may be unrealistic. Also, mandated care is not needed for all children who fail to show up for health care visits, and it is fraught with ethical, legal, and economic problems, not to mention the logistics of enforcement.
In light of the problems with these options, maybe the best course of action are the simple steps we instituted nine years ago with David. Those initial phone calls eventually developed into a family support program, which evolved as the pediatric at-risk population grew. To date, we have identified, tracked, and intervened for some 1,400 children from birth to age six. After finding David in the no-show pile, we began looking very closely at who else was not coming in. Daily we reviewed the charts of every child who failed to show. We learned that frequent no-shows often are major identifiers of a child or family needing attention. Specifically, we have defined cause for follow-up as two well-child no-shows in the first six months and two or more consecutive well-child no-shows at any age under six. Our family support program now includes a team of two nurses and a social worker who are funded by the Good Samaritan Hospital as part of its community outreach. They make home visits, conduct parenting classes, consult with schools, address patients’ concerns in the office and by phone, periodically review charts, and help our resident physicians in making referrals to community agencies. The daily review of no-show charts, still at the heart of the program, is probably the most easily replicable action for other primary care practices, not all of which may have the resources we have been lucky enough to procure. However, any office should be able to have someone review the charts of no-show children and look for possible red flags. Health care providers can then follow up with a call or letter, or a request that protective services bring the child in if parents do not respond, as in David’s case. What we need to realize is that once a chart is filed back into the system, the child is out of sight, out of mind, and possibly at risk of a real tragedy—like those the public so often reads about in newspapers. The intervention model that began as a simple follow-up call to David’s family is now being replicated at two public health centers in Philadelphia. Maybe there is hope for some of the other Davids in the world when providers can find the wherewithal to make that first phone call to find out: Where is David?
Janette Kurie, jkurie{at}gshleb.com, is director of behavioral medicine for the Pennsylvania State University/Good Samaritan Hospital family and community medicine residency program. She is a former member of the Pennsylvania Attorney General’s Family Violence Task Force and that state’s Child Fatality Review Committee.
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Seeing David
Rescuing A Child
