Baby Doe Law

The Baby Doe Law or Baby Doe Amendment is an amendment to the Child Abuse Prevention and Treatment Act of 1974, passed in 1984, that sets forth specific criteria and guidelines for the treatment of disabled newborns in the United States, regardless of the wishes of the parents.

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.

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.

In 1982 a baby known as "Baby Doe" was born in Bloomington, Indiana, with Down syndrome and a birth defect requiring surgery. The parents refused the surgery because of the child's Down syndrome. Hospital officials had a guardian appointed by the Indiana Juvenile Court to determine whether the surgery should be done. The court ruled in favor of the parents (and thus against the surgery), and the Indiana Supreme Court refused to hear the case. The baby died later in 1982. Due to the baby's death (mootness) there could be no appeal to the Supreme Court.

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 (meningomyelocele), 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. Vermont attorney and right to life advocate 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 (past October 19) 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.