The Baby Doe Law or Baby Doe Amendment is an amendment to the

Child Abuse Prevention and Treatment Act The Child Abuse Prevention and Treatment Act (Public Law 93–247) of 1988 provides financial assistance for demonstration programs for the prevention, identification, and treatment of child abuse and neglect and to establish a National Center on Ch ...

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.

Details of the law

The Baby Doe Law mandates that states receiving federal money for child abuse programs develop procedures to report

medical neglect In the context of caregiving, neglect is a form of abuse where the perpetrator, who is responsible for caring for someone who is unable to care for themselves, fails to do so. It can be a result of carelessness, indifference, or unwillingness an ...

, 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

In 1982 a baby known as "Baby Doe" was born in

Bloomington, Indiana Bloomington is a city in and the county seat of Monroe County in the central region of the U.S. state of Indiana. It is the seventh-largest city in Indiana and the fourth-largest outside the Indianapolis metropolitan area. According to the Mo ...

, with

Down syndrome Down syndrome or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual dis ...

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 The terms moot and mootness are used in both in English and American law, although with different meanings. In the legal system of the United States, a matter is moot if further legal proceedings with regard to it can have no effect, or eve ...

) there could be no appeal to the Supreme Court.

Baby Jane Doe

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 A birth defect, also known as a congenital disorder, is an abnormal condition that is present at birth regardless of its cause. Birth defects may result in disabilities that may be physical, intellectual, or developmental. The disabilities ca ...

affecting the spine and brain. Baby Jane Doe was born on October 11, 1983, in

Long Island, NY Long Island is a densely populated island in the southeastern region of the U.S. state of New York, part of the New York metropolitan area. With over 8 million people, Long Island is the most populous island in the United States and the 18th ...

, with an open spinal column (

meningomyelocele Spina bifida (Latin for 'split spine'; SB) is a birth defect in which there is incomplete closing of the spine and the membranes around the spinal cord during early development in pregnancy. There are three main types: spina bifida occulta, m ...

), hydrocephaly and

microcephaly Microcephaly (from New Latin ''microcephalia'', from Ancient Greek μικρός ''mikrós'' "small" and κεφαλή ''kephalé'' "head") is a medical condition involving a smaller-than-normal head. Microcephaly may be present at birth or it ...

. 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 Paralysis (also known as plegia) is a loss of motor function in one or more muscles. Paralysis can also be accompanied by a loss of feeling (sensory loss) in the affected area if there is sensory damage. In the United States, roughly 1 in 5 ...

, to have

epilepsy Epilepsy is a group of non-communicable neurological disorders characterized by recurrent epileptic seizures. Epileptic seizures can vary from brief and nearly undetectable periods to long periods of vigorous shaking due to abnormal electrica ...

and kidney damage, and to have severe brain damage. The parents, who were

Roman Catholic Roman or Romans most often refers to: *Rome, the capital city of Italy * Ancient Rome, Roman civilization from 8th century BC to 5th century AD * Roman people, the people of ancient Rome *'' Epistle to the Romans'', shortened to ''Romans'', a let ...

Christians, consulted medical specialists, clergy, and social workers to decide what to do. They chose

conservative management Conservative management is a type of medical treatment defined by the avoidance of invasive measures such as surgery or other invasive procedures, usually with the intent to preserve function or body parts. For example, in appendicitis, conservati ...

with nutrition, antibiotics, and bandages, rather than invasive surgery to close the hole in her spine.

Vermont Vermont () is a state in the northeast New England region of the United States. Vermont is bordered by the states of Massachusetts to the south, New Hampshire to the east, and New York to the west, and the Canadian province of Quebec to ...

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 The United States Department of Health and Human Services (HHS) is a cabinet-level executive branch department of the U.S. federal government created to protect the health of all Americans and providing essential human services. Its motto is ...

(HHS) 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 (past October 19) under section 504 of the

Rehabilitation Act of 1973 The Rehabilitation Act of 1973 () is a United States federal law, codified at et seq. The principal sponsor of the bill was Rep. John Brademas (D-IN-3). The Rehabilitation Act of 1973 replaces preexisting laws (collectively referred to as the V ...

. 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 Kidney disease, or renal disease, technically referred to as nephropathy, is damage to or disease of a kidney. Nephritis is an inflammatory kidney disease and has several types according to the location of the inflammation. Inflammation can b ...

and the need to use a

wheelchair A wheelchair is a chair with wheels, used when walking is difficult or impossible due to illness, injury, problems related to old age, or disability. These can include spinal cord injuries ( paraplegia, hemiplegia, and quadriplegia), cerebr ...

, but she can speak and currently lives in a

group home A group home, congregate living facility, or care home (the latter especially in British English and Australian English) is a residence model of medical care for those with complex health needs. Traditionally, the model has been used for children ...

. She celebrated her 30th birthday with her family in 2013.

The Baby Doe Laws

In January 1984, the government issued Baby Doe regulations whereby if parents refused treatment for their infants with congenital defects, Infant Care Review Committees were required to advise the hospital to alert the courts or a child protective agency. In 1986, those regulations were struck down by the

U.S. Supreme Court The Supreme Court of the United States (SCOTUS) is the highest court in the federal judiciary of the United States. It has ultimate appellate jurisdiction over all U.S. federal court cases, and over state court cases that involve a point o ...

in the case ''Bowen v. American Hospital Association (AHA), et al.'', on the grounds that the autonomy of the states had been violated and that the

did not apply to the medical care of disabled infants. However, on October 9, 1984, the final Baby Doe law, known as the Baby Doe Amendment, amended the

of 1974 to include the withholding of fluids, food, and medically indicated treatment from disabled newborns. This law went into effect on June 1, 1985, and is still in effect.For information about this, see: Kathryn Moss (1987) "The 'Baby Doe' Legislation: Its Rise and Fall". ''Policy Studies Journal'' 15 (4), 629–651.

Actual text of the current Baby Doe 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'': :(B) an assurance that the State has in place procedures for responding to the reporting of medical neglect (including instances of withholding of medically indicated treatment from disabled infants with life-threatening conditions), procedures or programs, or both (within the State child protective services system), to provide for-- ::(i) coordination and consultation with individuals designated by and within appropriate health-care facilities; ::(ii) prompt notification by individuals designated by and within appropriate health-care facilities of cases of suspected medical neglect (including instances of withholding of medically indicated treatment from disabled infants with life-threatening conditions); and ::(iii) authority, under State law, for the State child protective services system to pursue any legal remedies, including the authority to initiate legal proceedings in a court of competent jurisdiction, as may be necessary to prevent the withholding of medically indicated treatment from disabled infants with life threatening conditions;

References

External links

The End at the Beginning

"'Baby Jane Doe' at 30: Happy, joking, learning"
– 2013 news article about 'Baby Jane Doe' on her 30th birthday {{EthicsCases 1984 in law 98th United States Congress United States federal child welfare legislation Medical ethics