Baby Doe Law - Background of The Law

Background of The Law

The law came about as a result of several widely publicized cases involving the deaths of handicapped newborns. They died from being withheld medical treatment,starved and not getting any water. The primary case was a 1982 incident involving "Baby Doe", a Bloomington, Indiana baby with Down syndrome whose parents declined surgery to fix esophageal atresia with tracheoesophageal fistula, leading to the baby's death. The Surgeon General of the U.S. at the time of this incident, C. Everett Koop, argued the child was denied treatment (and food and water) not because the treatment was risky but rather because the child was mentally retarded. Koop commented publicly that he disagreed with such withholding of treatment. In his decades as a pediatric surgeon, Dr. Koop had repaired hundreds of such defects, with a continually improving rate of success. By 1982, success was nearly certain if the surgery was performed.

A similar situation in 1983 involving a "Baby Jane Doe" again brought the issue of withholding treatment for newborns with disabilities to public attention. Baby Jane Doe was born on October 11, 1983, in New York, with an open spinal column, (meningomyelocele), hydrocephaly and microcephaly. Surgical closure of the defect and reduction of fluid from her brain would prolong her life, but she would be bedridden, paralyzed, epileptic, and with severe brain damage. Faced with an agonizing decision, the parents consulted specialists, clergy, and social workers. They decided to treat the newborn with antibiotics and bandages, rather than surgery to repair the defect.

Vermont attorney Lawrence Washburn, brought suit in New York to obtain an order to have the surgery performed. Also, the Department of Health and Human Services (HHS) received a complaint that Baby Jane Doe was being denied medical treatment. The HHS referred the case to New York's Child Protective Services, which on November 7 found no merit to the complaint. The HHS also obtained copies of the infant's medical records for her first week of life, which were reviewed by the Surgeon General, C. Everett Koop, who stated that he did not see anything in the record that would exclude the child from surgery. HHS took the stance that Baby Jane Does was being discriminated against due to her medical conditions and mental retardation. HHS repeatedly requested copies of the infant's medical records (past October 19) under section 504 of the Rehabilitation Act of 1973.

Koop's efforts to educate Congress about this issue ultimately led to the Baby Doe Amendment (U.S.C.A. TITLE 42, CHAPTER 67, Sec. 5106a). On October 9, 1984, the amendment extended the laws defining child abuse to include the withholding of fluids, food, and medically indicated treatment from disabled children. The law went into effect on June 1, 1985.

In early November, HHS brought suit against the hospital to the US District Court. The court concluded that the hospital was not in violation of section 504, and that the hospital treatment plan for the infant was based on the parents' decision to withhold surgery, not on discrimination. The court also found the parents' decision was "reasonable" based on the "medical options available and genuine concern for the best interests of the child."

The Court of Appeals ruled that the Rehabilitation Act did not give HHS any ability to interfere with the "treatment decisions involving defective newborn infants,". In 1986, the regulations were struck down by the U.S. Supreme Court on the grounds that the autonomy of the states had been violated and that the Rehabilitation Act did not apply to the medical care of handicapped infants.