The Campaign to Let Retarded Children Live

The death of ‘Baby Doe’ in Bloomington galvanizes the Reagan White House.

In April 1982, the death of “Baby Doe” in Bloomington, Indiana, made headlines nationwide. The newborn, with Down’s syndrome and correctable physical deformities, was starved to death after his parents and doctor decided his life was not worth sustaining. While he did not count for much in the eyes of his family, “Baby Doe” single-handedly riveted public attention on a hospital practice that is kept well hidden from view. The practice is ridding parents of unwanted handicapped babies by deliberately withholding food or treatment.

In Washington, the Reagan administration has responded to the uproar by establishing a hot line at the Department of Health and Human Services (HHS). The hot line number was to have been posted at the 6,800 hospitals that receive federal money, along with a warning that “discriminatory failure to feed and care for handicapped infants in this facility is prohibited by federal law.” The measure took effect March 22, but three weeks later, a federal judge in Washington struck it down. He said the rule was “arbitrary and capricious” in increasing the government’s power to police hospital nurseries.

Proponents of the new regulation see it as a long-overdue enforcement of a section of a civil rights law, which since 1973 has stated that no person should be denied “benefits” solely because he or she is handicapped. Disabled citizens’ groups and right-to-life organizations say the rule sends a necessary message to health-care providers that life—despite its apparent “quality”—is to be protected. Hospital administrator Gordon B. Avery, commenting on how this may affect hospitals, wrote in a Washington Post column that “this is capital punishment for the institution, amounting to bankruptcy.”

Besides fearing economic retribution, most pediatricians are highly critical of what they see as a needless intrusion into their medical practice. At the American Academy of Pediatrics, Harry Jennison said, “To have issues that involve life and death handled bureaucratically by Big Brother is ludicrous.”

Successful hospital treatment for babies who surely would have died in the past is increasingly commonplace. Recently, the youngest premature baby ever to survive pulled through in San Diego six weeks before she should have been “viable,” according to popular legal and medical definitions.

Because of this, pediatricians are shouldering new burdens of responsibility for considering “quality of life” and the allocation of costly medical resources—questions that may seriously complicate their mandate simply to protect and preserve life. U.S. Surgeon General C. Everett Koop, who supports the HHS regulation, acknowledged at a Senate hearing last month that the rule might make life a little more difficult for the average pediatrician, but Koop, a pediatric surgeon, sees it as an essential deterrent. He hopes it will force the issue among doctors, causing them to clarify their thinking and begin viewing these cases as clear life-or-death choices with relatively few “gray areas” of doubt.

Koop testified at the hearing that “it is very important to note that we do not intend to fruitlessly prolong the process of dying. Rather, we seek to guarantee that infants who would live, given ordinary care, will not be denied the usual opportunity for life by someone who judges that their lives are not worth living.”

Physician George A. Little, speaking for the American Academy of Pediatrics, which filed suit against HHS, said the warning signs and the hot line number will generate a distrust of physicians and “trigger confusion in the minds of parents” by implying that violations are commonplace. Little questioned whether nonmedical HHS investigators are qualified to decide which treatments are “appropriate.” Part of the problem, Little said, is that HHS “has not produced any direct evidence of inappropriate treatment of severely ill newborns.” He called the HHS action “a completely untried procedure to remedy a situation which it cannot define.”

Proponents of the rule say the burden of proof weighs more heavily on the medical community to show that the rule is not needed. They cite medical journal accounts, such as a 1973 report from two Yale University doctors, who said 14 percent of the infant deaths in their hospital over a two-year period resulted from deliberate neglect. Surveys of pediatric surgeons conclude that most of them would not correct physical problems in Down’s syndrome children. Koop said he has received more than 20 calls in recent months from nurses who face disciplinary action for opposing doctors’ orders to deny treatment or food.

Instead of government intervention, pediatricians advocate ethical review committees inside hospitals to provide well-rounded assessments in hard cases. At present, according to a presidential commission survey, fewer than 5 percent of the nation’s hospitals have such procedures. Ethicists are scrambling to stay apace of advances in technology and treatment. A recent presidential commission report, entitled “Deciding to Forgo Life-sustaining Treatment” says “society should adopt a very restrictive standard” because even “babies whose lives are doomed to be brief are owed whatever relief of suffering and enhancement of life can be provided.” The report sharply criticized the parents, doctors, and judges responsible for Baby Doe’s death. It does not endorse the HHS regulation, which it said may lead to excessive intervention by the government.

There seems to be some evidence of a lack of interest and expertise among pediatricians concerning handicapped children. A task force of pediatric education experts assessed medical school training in the areas of handicaps and medical ethics. Their conclusion: “grossly inadequate.”

Parents also have extremely limited contact with severely handicapped children, so stereotypes abound. Ann-Marie, a nursing supervisor, who asked that her last name be withheld, gave birth to a Down’s syndrome infant five years ago and was plunged immediately into emotional turmoil. “It’s very hard,” she says. “You don’t think you can cope with it.” Choosing to withhold treatment appears to be an easy way out, Ann-Marie says, “because the normal first reaction is ‘get rid of it!’ ”

But she and her husband Scott instructed their doctors to proceed with life-saving surgery on their infant Jill—who had a physical deformity identical to that of “Baby Doe.” In Jill’s case, however, the hospital would not have collaborated with a parental decision to withhold treatment. If the parents had decided to “get rid” of Jill, they would have had to take her home to die.

The initial surgery corrected Jill’s intestinal obstruction, but more serious physical troubles cropped up, causing her heart to fail over and over. Again, the parents faced a decision, but by that time they had seen “there was something in this kid that was salvageable,” Ann-Marie recalls. Today, Jill is moderately retarded, attends a special school, and looks forward eagerly to dance-movement class each week. She is “a bundle of energy,” her mother says, and she readily recognizes colors and numbers. Strong support from their Episcopal church as well as group meetings with parents of other Down’s children have eased some of the inevitable strain on the parents and their two normal children.

“When I look at Jill and see how much she enjoys her life,” Ann-Marie reflects, “I’d hate to think of being the one who caused her to miss out.”

A Boston News Report Strikes A Nerve

Groups championing the rights of handicapped infants have found an unlikely ally within the ranks of the usually skeptical secular news media. Boston’s CBS affiliate, WNEV-TV, produced a four-part news report, “Death in the Nursery,” documenting cases of infants being deliberately neglected in hospitals due to their handicaps and presumed low “quality of life.”

The show’s influence has spread far beyond Boston, where it has aired three times due to popular demand. President Ronald Reagan and members of the White House staff viewed it via closed-circuit television in their offices. Excerpts have been shown at Senate hearings and press conferences on the issue.

Carlton Sherwood, a Pulitzer-prize-winning reporter who developed the story, recently moved to WNEV from Gannett News Service in Washington.

In the report, William Taeusch, head neonatologist at Harvard Medical School’s Brigham and Women’s Hospital, admits that an infant with Down’s syndrome is less likely to be treated for physical defects than a child without Down’s. The show knocks the Department of Health and Human Services (HHS) for allegedly winking at previous reports of neglected infants.

Doctors and parents are portrayed in conflict. In one case, the mother of a Down’s syndrome child says her doctor told her the boy would never know his name, walk or talk. He advised her to institutionalize the baby and tell her family and friends he was stillborn. She was outraged and took the child home. Today the boy, Jason Kingsley, is a star of “Sesame Street.”

A Connecticut couple featured in the series has adopted 11 severely handicapped children. Reagan, reportedly deeply moved by their story, telephoned the family and spoke with many of the children after he saw the film. He invited the whole family to the White House for a 45-minute visit with him in April.

Sherwood said he believes a “conspiracy of silence” about the practice of withholding care pervades the medical community as well as news media who know about the situation.

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