Baby Doe Law

The Baby Doe Law or Baby Doe Amendment is the name of 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 is "virtually futile" in terms of the newborn's survival. 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 handicapped newborns. The parents of these children withheld standard medical treatment for correctable gastrointestinal birth defects, leading to their death by preventing nutrition and hydration. 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 intellectually disabled. 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 City, 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. 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.^[1]

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.^[2] 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.^[3]

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,".^[4][5]

During the protracted court battles, Baby Jane's parents did consent to some surgery for their daughter. The hole in her spine closed naturally, but she was still mentally retarded and suffered from many other handicaps.^[6]

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.^[7]

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 (specifically, the withholding of medical care to seriously ill newborns). 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:

(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

See also

• Born-Alive Infants Protection Act
• Meltdown (Steve Taylor album) Christian artist Steve Taylor wrote a song in 1984 in response to the Baby Doe incidents, entitled "Baby Doe."
• Baby K

External links

• The End at the Beginning
• http://uuhsc.utah.edu/ethics/KeyCases.htm