The Baby Doe Law or Baby Doe Amendment is an amendment to the Child Abuse Law passed in 1984 in the United States that sets forth specific criteria and guidelines for the treatment of seriously ill and/or disabled newborns, regardless of the wishes of the parents.
Details of the law
The Baby Doe Law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment for the newborn's survival is "virtually futile." Assessments of a child's quality of life are not valid reasons for withholding medical care.
Background of the law
The law came about as a result of several widely publicized cases involving the deaths of disabled newborns. The parents of these children withheld standard medical treatment for correctable gastrointestinal birth defects, sometimes leading to their deaths.
Baby Doe
The primary case was a 1982 incident involving "Baby Doe", a Bloomington, Indiana, baby with Down syndrome whose doctors denied surgery to fixesophageal atresia with tracheoesophageal fistula, leading to the baby's death. The Surgeon General of the United States, at the time of this incident, Doctor C. Everett Koop, argued the boy was denied treatment not because the treatment was unreasonably risky but rather because he was intellectually disabled. Koop commented publicly that he disagreed with such withholding of treatment. In his decades as a pediatric surgeon, 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 somewhat similar situation in 1983 involving a "Baby Jane Doe" again brought the issue of withholding treatment for newborns with disabilities to public attention. In this case, the parents and doctors had decided not to perform surgery on a baby with a birth defect affecting the spine and brain. Baby Jane Doe was born on October 11, 1983, in Long Island, NY, with an open spinal column,, hydrocephaly and microcephaly. Surgical closure of the defect and reduction of fluid from her brain was expected to prolong her life – perhaps extending her life from age 2 without the surgery, to age 20 with it – but she was still expected to be bedridden and paralyzed, to have epilepsy and kidney damage, and to have severe brain damage. The parents, who were Roman Catholic Christians, consulted medical specialists, clergy, and social workers to decide what to do. They chose conservative management with nutrition, antibiotics, and bandages, rather than invasive surgery to close the hole in her spine. Vermont attorney and right-to-life advocate Lawrence Washburn brought suit in New York to obtain guardianship and an order to have the surgery performed. After an initial win in court, in which a justice of the New York Supreme Court found that her life was in "imminent danger", another person was appointed as her guardian, and the surgery was ordered, Washburn lost his case on appeal. He then filed another in federal court. The parents, at this point, had accumulated tens of thousands of dollars in legal debts. Also, the Department of Health and Human Services received a complaint that Baby Jane Doe was being denied aggressive 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 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 Doe was being discriminated against due to her medical conditions and mental disability. HHS repeatedly requested copies of the infant's medical records under section 504 of the Rehabilitation Act of 1973. 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". During the protracted court battles, Baby Jane's parents consented to some surgery for their daughter. The hole in her spine closed naturally, without surgery. Baby Jane survived beyond anyone's expectations. She has intellectual and other disabilities, such as kidney damage and the need to use a wheelchair, but she can speak and currently lives in a group home. She celebrated her 30th birthday with her family in 2013.
Results
Koop's efforts to educate the United States Congress about this issue ultimately led to the Baby Doe Amendment. 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 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.
Changes in the regulations over time
In order to enforce the regulations laid out in the Baby Doe Law, telephone hot lines were set up around the country and the federal government encouraged anonymous reporting of alleged child abuse. The hotlines were discontinued, however, as they resulted in the frequent intrusion of federal investigators into hospitals, often without warrant or without finding actual abuse.
Actual text of the law
The following text is found under the eligibility requirements for federal funding in U.S.C.A. TITLE 42, CHAPTER 67, Sec. 5106a. Grants to States for child abuse and neglect prevention and treatment programs:
