Helping "vulnerable" children-and their parents-lead normal lives

DR. LIPSTEIN is a senior resident at the University of Washington School of Medicine, Seattle. She has nothing to disclose in regard to affiliations with, or financial interests in, any organization that may have an interest in any part of this article.

"Raymond is here," announces your assistant. It is late in the afternoon; you are exhausted. Just the mention of Raymond's name compounds your feeling of fatigue. It is not Raymond himself, a now-healthy 9-month-old, who produces this feeling. It is having to face his mother, who visits the office every month and calls at least once a week.

Mrs. La France clutches Raymond tightly to her as she slumps down into a chair, sighing audibly. Her facial muscles are tight, her eyes close to tears. "He has another cold, doctor. He just got over one two weeks ago." The gravity in her voice is what you would expect of a parent whose child's leukemia has come out of remission. To Raymond's mother, the sword of Damocles hangs over her son's head by a slender thread, ready to drop at a moment's notice.

You met Raymond when he spent a week in the neonatal intensive care unit. He was admitted for hypothermia, had a negative septic workup, and developed hyperbilirubinemia that readily resolved. He was fine at the time of discharge and has remained healthy since. While Raymond was in the NICU, his parents were often tearful; his mother wondered if something she ate during pregnancy had contributed to the baby's problems. She told you that she herself had a history of several chronic illnesses, as well as anxiety. In talking with her, it became clear that she was still actively mourning her father's recent death.

During the ensuing months, you have come to know the family well. Shortly after Raymond was discharged from the NICU, his mother expressed concern that he had a medicinal smell, which neither you nor the baby's father could detect. Normal developmental concerns have been exaggerated in this family; the mother has expressed anxiety about the baby drooling at 4 months and later about conflicting advice she read on the Web about starting solid foods. Most recently, she called your clinic from out of town because Raymond's cousin had a cold and she feared that if the baby caught it he would have to be hospitalized. For several months, you have been concerned that Raymond will develop vulnerable child syndrome.

Vulnerable child syndrome (VCS) was first identified in 1964 by Green and Solnit, who described a cohort of children, each of whom had a history of life-threatening illness.¹ Years after recovery, the children displayed a variety of symptoms, including abdominal pain, tantrums, sleep difficulties, headaches, and school problems. The authors divided the symptoms into categories: difficulty with separation, infantilization, excessive bodily concerns, and school underachievement. They concluded that the presenting concerns were related to problems in the parent-child relationship that stemmed from the parents' reaction to the child's life-threatening illness. After this initial study, other investigators went on to find that VCS occurs when parents' and physicians' perceptions of a child's medical vulnerability are discordant and that it leads to difficulties in the relationship between parents and child or behavior problems in the child.

In 1995, the community prevalence of children at risk for VCS was estimated to be 10%.² As more premature infants and children with previously lethal illnesses survive, the prevalence will likely increase.

Families at risk

Even before a child is born, the family may be at risk of VCS because of a history of infertility, miscarriage, or illness during pregnancy.^1,3 Low birth weight and prematurity have been found to correlate with elevated parental perception of the child's vulnerability.⁴ Similarly, early illness or other threat to the child's health, especially if the parents believe the child will die, increases the risk of VCS. Hospitalization during the first year of life has been shown to affect parental perception of the child's vulnerability, independent of birth weight or current health status.⁵