AS A CIVILIZATION rich in medical technology, we have become increasingly acquainted with the dilemmas of protracted aging. Medicare, Social Security and nursing homes give testimony to our commitment to longevity while, increasingly, concepts such as euthanasia, living wills and suicide pacts rise up to protest the mindless support of life. Ethical and economic themes run throughout these issues, both enlightening and confounding them.
These tough and unresolved questions about the far end of life also confront the near end. When is an infant too small or too premature to be resuscitated? What amount of effort and resource should be spent on reviving and supporting a tiny bundle whose likelihood of normal survival is slim--possible but slim? Who should make these decisions--the parents, the pediatrician, the society? These conundrums are the subject of The Long Dying of Baby Andrew, the lengthy, detailed and painful account of the six-month life and death of an 800-gram (1-3/4 pound) premature infant as recorded by his parents, Robert and Peggy Stinson.
Andrew is treated initially in a low- tech nursery in the community hospital where he has been born three months early, and there is little expectation on the part of the pediatrician or his parents that he will survive. After a week, however, Andrew is still alive and, reluctantly, the Stinsons permit him to be transferred to a medical center with a high- powered intensive-care nursery. From the outset they are ambivalent about the attempted rescue of their son. They enjoy and suffer normal parental instincts-- however befuddled by the premature birth--while, at the same time, they are dubious about Andrew's intact survival, worried about his suffering and skeptical about the expense of the entire undertaking.
These monumental quandaries are befouled by a run of apparently insensitive physicians who staff the intensive-care nursery and who become the Stinson's antagonists for the balance of Andrew's struggle. It is the position of the medical staff that Andrew is salvagable and they proceed on that premise in spite of the wishes of the Stinsons and regardless of the consequences. The neonatal team initiates and maintains artificial respiration, supplies special high caloric supplements by deep intravenous feedings, fights multiple infections, and orders environmental stimulation therapy in later months--all in the face of clear and repeated objection by the parents. The doctors--and there are hosts of them in the rotational "teaching hospital" setting-- respond with varying measures of hostility, condescension and inaccuracy to the protests and appeals of the Stinsons. In spite of the most aggressive tools of neonatology, Andrew's course is one of failure leading to eventual, merciful death.
This is not to say that 800-gram infants can't make it. The best data now available suggests that for infants of this size somewhere between 6 and 30 percent will survive without damage. Of all those who do survive 7-30 percent will have severe handicaps and 22-55 percent will suffer minor impediments. These figures (figures the likes of which the neonatologists never provided the Stinsons) raise as many questions as they settle. If, say, one of of five babies of this size will grow to normal adulthood, should all be treated? What about the risk of an increased incidence of retadation in the failures? What is the family's stake in these decisions and what is society's? And so on.
The Long Dying of Baby Andrew doesn't settle these issues. Rather it raises them, boldly, clearly, painfully. And it puts them in context. Caught up as they are in the "arrogant heroics" of the intensive care nursery, the Stinsons' life together bogs down. Bitterness and anomie come between them. Their 5-year-old child is neglected and resentful. Unable to relate to the intensity of the Stinson's tribulations, friends drift away. Their modest academic income is stretched to the limit and the fear of total financial catastrophe haunts them. And, slowly, Andrew becomes a foreign object. "I keep trying to puzzle out to what extent the Andrew in the intensive care nursery is our responsibility, is even our Andrew. . . . Andrew will be, in important ways, a person grown by scientists in a lab--if he's not 'turning out too well,' they're at least learning how to produce the next person a little better."
The Stinsons, however, do not escape their story unscathed. The dogged humorlessness with which they record their troubles is honest, but it is neither endearing nor enjoyable. Midway in the tale I found myself hungering for some whimsy, some levity and perspective and I wondered, had it been there, might not the terrible communications snarl with the medical center have been improved. Some good editing, too, could have lessened the numbing burden of the book. A journal format is used throughout with the authors alternating entries and often describing the same incidents. Occasionally this provides insight. More often it is repetitious and annoying.
The Long Dying of Baby Andrew is the anatomy of a calamity. It supplies neither the biomedical nor the ethical answers to the question of when the full army of science should be mobilized on behalf of an infant who happens into the world three months ahead of time. But it does pose the problem in bold face so that there is no escaping it. Moreover, it presents the medical center--from neonatologist to billing clerk--at its rigid worst. When medicine has no cleaner answers than it did for baby Andrew, its practitioners have a clear human responsibility to stand shoulder to shoulder with the parentssand deal with the problems cooperatively. If it was nothing else, Andrew's brief life is an eloquent appeal for physicians and parents to work together in the twilight zone of neonatal medicine.