Medical advances in the last decade have made it possible to prolong the lives of gravely handicapped infants who otherwise would have been doomed. While many of these salvaged children go on to lead productive lives, others linger in a vegetative state for years, draining their parents' emotional and financial resources. Given a choice, some parents have deemed it more humane to let their severely handicapped infants die. Now, a new congressional amendment to the 1974 Child Abuse Act that went into effect last month makes it unlawful to deny treatment to such infants except in the most extreme cases.
In his book Playing God in the Nursery (Norton, $18.95), Jeff Lyon, a writer for the Chicago Tribune, argues that the new federal statute is not necessarily humane. Though designed to protect the rights of the gravely disabled child, the measure may also cause needless suffering, he maintains, both for the infants and the parents who must witness their pain. Lyon, 41, married and the father of an 18-month-old daughter, has seen such tragedies firsthand. A member of the University of Chicago hospitals' pediatric ethics committee, he has worked extensively with the mentally retarded. His brother Mike, 31, has lived in an institution for the retarded since he was 8 and will never function above the level of a 10 year old. "He's a very frustrated person," says Lyon who spoke with reporter Giovanna Breu. "My sense of his unhappiness makes me all the more aware of people much more seriously affected than Mike."
Why did you write this book?
These are issues that potentially affect everyone of childbearing age. Decisions have been made by the White House, physicians and lobbyists. Legislation is passed by people who don't have a personal stake in the issue. But this is too important to leave to them; we all ought to get involved. I want to bring the subject out of the closet.
How will the new congressional amendment affect the parents of a child with life-threatening handicaps?
Let's say a child is born with defects that require life-support intervention. Regardless of what the parents or the doctors may prefer, their hands are largely tied because the new law says that all medically indicated treatment, including appropriate nutrition, must be supplied to disabled children regardless of the quality of the life that awaits them. The only exceptions are when the child is irreversibly comatose, when treatment would merely prolong dying, or when treatment would be futile and in itself inhumane.
What prompted Congress to pass such a measure?
The issue was brought to public attention in 1982 by a "Baby Doe" case in Indiana: Two doctors had a strong disagreement over the treatment of a Down syndrome infant with a potentially fatal defect of the esophagus and windpipe, requiring vigorous surgery with long-lasting aftereffects. The pediatrician pushed for surgery, while the obstetrician—who felt that the quality of the child's life would be minimal—decided the parents should have a choice. After agonizing, the parents asked the doctors not to operate.
What happened then?
The Indiana courts upheld the parents when the hospital sought a ruling; the right-to-life organizations and disability-rights groups made it a cause célèbre. At their urging, in May 1982 the Reagan Administration sent warnings to hospitals saying that refusing to treat handicapped children was discriminatory and a violation of the babies' civil rights. The Administration later issued regulations requiring signs in nursery and maternity wards asking anyone who had knowledge of a handicapped child not receiving care to call a Baby Doe hotline. Those regulations were twice struck down by federal courts, but the Supreme Court, which has never ruled on these issues before, is now reviewing the whole discrimination issue.
What do you see as the main problem with the amendment?
The underlying assumption of the Child Abuse Amendment is that the child needs protection from its own parents. In these cases, that's virtually always false: Of all the potential decision makers, the parents are best situated to measure what's in the best interests of their child. Even if, in a rare case, parents did act out of disregard for a handicapped child, there are safeguards like hospital ethics committees and, in extreme situations, the courts.
Are there times when it's best for the child's life not to be prolonged?
When the infant's current condition or prognosis is abysmal, in my view it would be better to allow nature to have its way. We have to realize that these are not lives as we would wish them to be, where everything has a happy ending: In many of these cases, these children suffer enormously.
Do you know any children like this?
Alex, a bright, beautiful child, began having respiratory difficulties soon after he was born in December 1982. His physicians discovered three very serious heart abnormalities, so surgeons gave him a shunt to permit more blood to reach his lungs. They then made him a diabetic, in effect, by removing his pancreas because it was producing too much insulin. Parts of his intestines died; he had to be fed through a tube. He required mechanical ventilation for so long that his lungs virtually stopped working alone. Finally, he had a series of strokes that left him brain damaged. He developed cerebral palsy, and he had no prospect but to die painfully in early childhood.
What did his parents do?
By the end he had endured 27 operations, and they began to think that it would be merciful to let him go. But the pediatrician was a committed right-to-lifer, and he continued to treat everything. Eventually they found a doctor who was more humane about withholding treatment. Alex finally died last February, and the parents honestly felt it was better for him.
Can you give any other examples?
There are children with a terrible disease called the Lesch-Nyhan syndrome. In its worst form, it involves retardation and a severe palsy. The hostility centers of the brain are activated, and it causes an inexplicable mania to mutilate oneself. Patients have to have their front teeth removed so they can't bite their fingers; they must be constantly kept in restraints. I met a 22-year-old man who, like a few victims of the syndrome, has near normal intelligence. He's rail-thin, with misshapen joints and no front teeth. I asked how he felt about things and he said, "I want to die."
Could you allow your child to die if she were seriously afflicted?
I don't think anyone knows how he would act in such an extreme situation, but I hope I would have the courage to make the right decision. And, if necessary, I hope I'd have the freedom to say, "My child's had enough."
What are some long-range repercussions of the Baby Doe amendment?
There are thousands of severely defective infants born every year, and their parents are sometimes wiped out by medical expenses that insurance doesn't cover. Society will have to bear much of the burden. Many of these children will outlive their parents, and we have to have facilities for housing them. A child placed in an institution today will, if he has a normal life span, cost society about $1 million. And this is aside from medical treatment.
What provisions are being made to care for these children?
Ironically, the Administration that tells us we must save all these infants has also systematically whittled away at the programs designed to help them and their parents. They have tried to cut federal special-education funding by 30 percent. Social Security disability benefits have been taken away from 200,000 qualified people, and the Maternal and Child Health Care Program has been slashed by 25 percent. The Developmental Disabilities Program, the major source of funds for programs for the retarded, was operating last year on less money than it received in 1980.
What can citizens do to express their concern?
They can write their congressmen and ask that this amendment be repealed. At the same time they can demand that Congress and the White House provide more support for the disabled. We're barely taking care of the disabled children who are already here, and we're certainly not gearing up for the flood of salvaged infants that we're likely to have in the future. Consistency demands that the government institute financial supports for parents, rather than just insisting on saving a child, presenting it to them and cutting them adrift. Otherwise, we're saving these kids without a purpose.
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