Congenital Birth Defects and the Medical Rights of Children: The "Baby Doe" Controversy

On April 9, 1982, a woman in a Bloomington, Indiana hospital gave birth to a son who was quickly diagnosed with Down syndrome, a chromosomal abnormality that produces mental retardation, and with esophageal atresia, the separation of the esophagus from the stomach, which rendered the newborn unable to absorb food. The obstetrician who delivered the baby told the parents that their child would have only a 50 percent chance to survive surgery for his atresia of the esophagus, and that even if surgery were successful, their child would remain severely retarded and would face a lifetime of medical treatment, disability, and dependency. He advised the parents to withhold treatment and let their child die of his birth defect. However, two other doctors, a pediatrician at the hospital and the family's physician, disagreed with the obstetrician's assessment of the newborn's prospects and called for immediate surgery. Nevertheless, the parents decided that they did not want the baby treated. The hospital's attorney as well as outside attorneys, one of them representing couples prepared to adopt the baby, went to court to have him declared a neglected child under Indiana's Child in Need of Services statute and to have the court order medical treatment. Indiana courts ruled that there was no violation of the statute, and that the parents, confronted with contradictory medical opinions, had the right to decide the fate of their child, soon named Baby Doe by the press. One of the attorneys appealed the case to U.S. Supreme Court Justice John Paul Stevens, but before the Justice could hear the case, Baby Doe died of dehydration and pneumonia on April 15.

The death of Baby Doe triggered a fierce controversy over the right of infants with congenital birth defects to medical treatment, as well as over the right of the government to intervene in the relationship between doctors and their patients and in decisions by parents about the future of their children. Conservatives, pro-life activists, and individual physicians and health care providers--including the nurses at the Bloomington hospital--condemned the decision not to operate on Baby Doe as infanticide. They demanded government regulations that would prescribe treatment even in spite of the parents' wishes. By contrast, physicians' organizations like the American Academy of Pediatrics denounced government interference with medical practice, and liberals argued that the choice for or against treatment should be exercised by parents, not the government. The courts sided with the parents in the absence of explicit legal provisions prohibiting the withholding of treatment.

As a pediatric surgeon and U.S. Surgeon General, C. Everett Koop found himself at the center of this controversy. During 475 operations over 35 years to correct esophageal atresia, his success rate had risen to nearly 100 percent for infants born full-term. Moreover, he knew that the degree of mental retardation from Down syndrome was impossible to predict, and that it can range from mild to severe. Moreover, the quality of life enjoyed by a child with Down syndrome was greatly affected by the emotional resources of his family, by the level of community support, and by the availability of medical and education services. Even though Koop acknowledged that information on Baby Doe's medical condition was incomplete--he had to rely on press reports because medical files were ordered sealed by the courts--Koop felt compelled by his previous professional commitment to saving the youngest and weakest of all patients, and by his sense of responsibility as the nation's chief public health officer, to speak out against the decision made by the parents of Baby Doe.

The moral and religious tone of Koop's stance made it suspect to many liberals and civil libertarians. Nonetheless, in his view, the nation's medical and legal system had clearly failed to protect Baby Doe both as a human being and as an American citizen against neglect and discrimination. His concern became even more urgent when on October 11, 1983, a girl, promptly named Baby Jane Doe, was born with spina bifida and other complications in a hospital in Port Jefferson, Long Island, the same hospital where Koop had spent summers as an intern from high school through medical school. Spina bifida, a condition in which a section of the lower spine is exposed, can lead to infection of the spine and brain, and subsequently to mental retardation. Moreover, the girl had both an abnormally small head and hydrocephalus, or water on the brain, an unusual combination. Once again, physicians reached contradictory diagnoses of the girl's medical condition and made unsupported predictions of her long-term prospects; once again the parents decided against treatment for their impaired child. Having been deeply troubled by Baby Doe's death in the previous year, Koop interceded more directly in the case of Baby Jane Doe. He called the physicians involved and attempted, unsuccessfully, to have her medical records subpoenaed and to compel treatment for the child in spite of her parents' stated preference. Once again, treatment was withheld while medical and legal disputes were fought out. Even though Baby Jane Doe survived, the delay in treatment kept doctors from preventing an infection of her spine and a subsequent inflammation of her brain, which in turn left her severely retarded.

As a surgeon Koop agreed with his medical colleagues that only an attending physician can make an accurate diagnosis of a child's birth defects and chance of survival, and that such determination had to be made on a case-by-case basis. Yet, as a public health officer and as a physician deeply concerned with the ethics of medical care, he also felt that the life of a baby born with congenital birth defects should be protected, especially when there were contradictory medical diagnoses and when there was no scientific way to predict the child's future quality of life. As Koop summed up his position, "we ought to do things to give a person all the life to which he or she is entitled, but not do anything to lengthen that person's act of dying." The right of government to override the rights of parents had been established in several areas, including truancy, child abuse, and immunization laws, and it should extend to the protection of children with birth defects and disabilities as well, he argued.

Thus, with some misgivings, Koop supported regulations drawn up by the Department of Health and Human Services (HHS) that prescribed in detail the provision of medical care to newborns with congenital birth defects. The regulations were later overturned by the courts for unduly restricting a doctor's medical judgment, a ruling with which Koop did not disagree. Then, after consulting proponents both of government regulation and parental choice, Koop drew up his own plan to prevent future Baby Doe crises. His plan centered on creating hospital-based patient-care committees of up to fifteen members, including community representatives, responsible for advising on the medical treatment of babies with birth defects. Like the HHS regulations, Koop's plan did not withstand legal scrutiny, because it infringed on the autonomy of doctors and parents. In the face of these failures, supporters of legal protections for disabled children next turned their attention to Congress, which in October 1984 extended the definition of child abuse in federal law to include the denial of fluids, nutrition, and medically indicated treatment for infants with birth defects, and required states to implement procedures for reporting and investigating such cases of neglect. The adoption of the "Baby Doe amendment," as it was called, was the culmination of an extended, often bitter debate over the medical rights of newborns, a debate that centered on the extent of government authority, the meaning of citizenship, and the value of human life.

Surgeon General Koop continued to champion children with disabilities, an issue with which he had long been involved as a pediatric surgeon. He organized a workshop on respirator-dependent children in December 1982, which explored ways of caring for these children in their own homes rather than in hospitals, and making Medicaid funds available to pay for long-term home care. One of the last conferences he convened was the "Surgeon General's Conference on Growing Up and Getting Medical Care: Youth with Special Health Care Needs," held in March 1989. In numerous speeches Koop urged policymakers, physicians, health care administrators, educators, and the public to recognize the dignity, rights, needs, and capabilities of children with life-threatening birth defects and other impairments. A growing number of such children were saved by advances in medicine, but were left with disabilities. Throughout his eight years as Surgeon General, Koop was the most outspoken and persistent government advocate for increasing access to medical and health care, educational opportunities, and employment for these children.