As the author of The Premature Baby Book (St Martin's Press, 1983), I have received hundreds of letters and telephone calls over the past decade from parents of babies treated in neonatal intensive care units (NICUs). Many of these parents express unqualified gratitude for the skilled staff and new technologies that saved the lives of their children. Others, however, voice concern, even anguish, over the way they and their babies were treated in the NICU. These parents tell of difficulties obtaining accurate information about their babies' conditions, treatments, and prognoses; of parental exclusion from medical and ethical decision-making; of the overtreatment of marginally viable babies and the undertreatment of babies' pain; of concerns about the relentless nursery environment and the use of poorly validated therapies; of unnecessary impediments to the nursing and nurturing of babies in the NICU; and of frustration over inadequate discharge planning, follow-up, and services for NICU survivors.4-16
In 1991 I sent some letters and articles that I had received from these parents to Dr Jerold Lucey, Editor of Pediatrics. Dr Lucey immediately proposed that the two of us convene a conference in which a small group of parents and physicians could discuss the problems described by parents and explore possible solutions.
At Dr Lucey's request, I assembled a group of articulate parents who were knowledgeable about the NICU from personal experience and from their work in support organizations, disability rights groups, and hospital ethics committees. Because I wanted a group that would be sympathetic to the concerns of medical professionals, I made an effort to choose parents with a background in health care or with a spouse or close family member in the medical profession.
- Received June 15, 1993.
- Accepted July 7, 1993.
- Copyright © 1993 by the American Academy of Pediatrics