Pediatric education strongly emphasizes the psychosocial aspects of diseases of children. The pediatric literature, replete with articles about evaluation and treatment of children with developmental disabilities,1-6 rarely addresses adaptation of the family to the child with a major congenital malformation or mental retardation.7-10 The dearth of such articles in general pediatric journals in recent years is inconsistent with the stated emphasis on developmental pediatrics in our training programs.11
How does one teach pediatric house officers to deal with handicapped children and their families? The emotions unleashed by the day-to-day needs of a handicapped child are uncomfortable, and are, to a large extent, defended against, if not denied, by the medical caretaker. Although necessary for one's own emotional survival, and for the delivery of objective pediatric care, such defenses may, in fact, interfere with one's ability to deal optimally with such a child and his or her family.12 Being Michael's mother has changed all of that for me.
I can remember vividly the date and time we first recognized that Michael had a problem. His placid disposition, coupled with a hectic household and our delight in having an "easy" baby for a third child, had combined into at most a vague sense of unease at his delay in motor activity. The realization that all was not well came to me suddenly and with urgency one night when Michael was nearly 7 months old.
"I don't know why I keep fooling myself," I told my husband that night. "He should be rolling over.
A Case of Diprosopus: Perinatal Counseling and Management
