One month after the premature birth of her son Andrew, Peggy Stinson wrote in her journal:
What threatened to be a simple, private sorrow has changed unexpectedly into something so altogether different, so altogether complicated that thoughts and feelings tangle hopelessly and give no guidance.
Andrew is not our baby anymore—he’s been taken over by a medical bureaucracy. The bureaucracy controls Andrew—access to Andrew, information about Andrew, decisions about what will happen to Andrew. It rolls inexorably onward, oblivious to our attempts to communicate, participate; oblivious equally to angry reaction and attempts to reconcile.
If this sounds bad, it’s not half so bad as it will be if President Reagan gets his way. The Stinsons’ problem was that they had doctors who followed a rigid ethic of preserving life at virtually any cost, and they could not get their son out of the hands of their doctors. Now, however, the president who promised to cut back on the intrusion of big government into the private lives of American citizens is taking steps to ensure that even when parents, doctors, and a hospital “Infant Care Review Committee” agree on the best course of action for an infant born severely handicapped, there will be another layer of bureaucracy—the federal government—to step in and see that the baby is treated, regardless of what the parents and their doctors think.
The Long Dying of Baby Andrew consists of the daily journals in which Peggy and Robert Stinson recorded their private thoughts between December 1976 and June 1977. At the beginning of that period, Mrs. Stinson was twenty-four weeks pregnant and the pregnancy was going seriously wrong. The Stinsons contemplated an abortion to avoid the risk of a life-threatening hemorrhage, but decided against it. A few days later the pregnancy began to miscarry. Mrs. Stinson was rushed to the hospital (in a town she does not identify) where, to everyone’s surprise, a baby was born alive, weighing one pound twelve ounces. The doctors expected the baby to die, but Andrew struggled on.
Against the Stinson’s better judgment, they were persuaded to allow him to be taken from the local community hospital to a downtown specialist pediatric hospital with a neonatal intensive care unit. There, despite a host of problems including periodic fits, infections, and a very uncertain prognosis for mental development, Andrew was put on a respirator and all the resources of modern medical technology were used to keep him alive. The Stinsons repeatedly made it plain that they did not want these heroic measures to be taken. Their wishes were ignored. Not until June 14 did Andrew die. Mrs. Stinson wrote in her journal, “Modern medicine makes possible a sad new epitaph: He died too late for grief.” The hospital sent the Stinsons a statement listing charges of $104,403.20. The doctor in charge told them: “We were all lucky to get out of this as easily as we did.”
The most unusual thing about …
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An Exchange on Baby Doe June 14, 1984