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Long title | An act to extend and improve provisions of laws relating to child abuse and neglect and adoption, and for other purposes. |
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Enacted by | the 98th United States Congress |
Effective | October 9, 1984 |
Citations | |
Public law | Pub. L. 98–457 |
Statutes at Large | 98 Stat. 1749 |
Codification | |
U.S.C. sections amended | 42 U.S.C. §§ , , , |
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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. [1]
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. [2] The parents, who were Roman Catholic Christians, consulted medical specialists, clergy, and social workers to decide what to do. [2] They chose conservative management with nutrition, antibiotics, and bandages, rather than invasive surgery to close the hole in her spine. [3] [4]
Vermont attorney and right-to-life advocate [4] Lawrence Washburn brought suit in New York to obtain guardianship [4] 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. [2] He then filed another in federal court. [2] The parents, at this point, had accumulated tens of thousands of dollars in legal debts. [2]
Also, the Department of Health and Human Services (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. [5] 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". [6] [7]
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. [3] [4] She celebrated her 30th birthday with her family in 2013. [4]
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. [1] In 1986, those regulations were struck down by the U.S. Supreme Court 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 Rehabilitation Act of 1973 did not apply to the medical care of disabled infants. [8] [1]
However, on October 9, 1984, the final Baby Doe law, known as the Baby Doe Amendment, amended the Child Abuse Prevention and Treatment Act 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. [9] [10] [1]
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:
Infanticide is the intentional killing of infants or offspring. Infanticide was a widespread practice throughout human history that was mainly used to dispose of unwanted children, its main purpose being the prevention of resources being spent on weak or disabled offspring. Unwanted infants were usually abandoned to die of exposure, but in some societies they were deliberately killed. Infanticide is generally illegal, but in some places the practice is tolerated, or the prohibition is not strictly enforced.
Baby farming is the historical practice of accepting custody of an infant or child in exchange for payment in late-Victorian Britain and, less commonly, in Australia, New Zealand and the United States. If the infant was young, this usually included wet-nursing. Some baby farmers "adopted" children for lump-sum payments, while others cared for infants for periodic payments.
Child abandonment is the practice of relinquishing interests and claims over one's offspring in an illegal way, with the intent of never resuming or reasserting guardianship. The phrase is typically used to describe the physical abandonment of a child. Still, it can also include severe cases of neglect and emotional abandonment, such as when parents fail to provide financial and emotional support for children over an extended period. An abandoned child is referred to as a foundling. Baby dumping refers to parents leaving a child younger than 12 months in a public or private place with the intent of terminating their care for the child. It is also known as rehoming when adoptive parents use illegal means, such as the internet, to find new homes for their children. In the case where child abandonment is anonymous within the first 12 months, it may be referred to as secret child abandonment.
Stephanie Keene, better known by the pseudonym Baby K, was an anencephalic baby who became the center of a major American court case and a debate among bioethicists.
David Southall is a retired British paediatrician who specialised in international maternal and child hospital healthcare and in child protection. He worked in Bosnia and Herzegovina in 1993-1995, for which he received an OBE in 1999. In 1995 he set up the charity Maternal and Childhealth Advocacy International (MCAI), of which he remains a trustee as of 2023. His child protection work and research into Munchausen syndrome by proxy attracted controversy and led to conflict with the General Medical Council.
The United States Children's Bureau is a federal agency founded in 1912, organized under the United States Department of Health and Human Services' Administration for Children and Families. Today, the bureau's operations involve improving child abuse prevention, foster care, and adoption. Historically, its work was much broader, as shown by the 1912 act which created and funded it:
The said bureau shall investigate and report to [the Department of Commerce and Labor] upon all matters pertaining to the welfare of children and child life among all classes of our people, and shall especially investigate the questions of infant mortality, the birth-rate, orphanage, juvenile courts, desertion, dangerous occupations, accidents and diseases of children, employment, legislation affecting children in the several states and territories.
Child abuse is physical, sexual, emotional and/or psychological maltreatment or neglect of a child, especially by a parent or a caregiver. Child abuse may include any act or failure to act by a parent or a caregiver that results in actual or potential wrongful harm to a child and can occur in a child's home, or in organizations, schools, or communities the child interacts with.
A baby hatch or baby box is a place where people can leave babies, usually newborn, anonymously in a safe place to be found and cared for. This was common from the Middle Ages to the 18th and 19th centuries, when the device was known as a foundling wheel. Foundling wheels were abandoned in the late 19th century, but a modern form, the baby hatch, was reintroduced from 1952 and since 2000 has been adopted in many countries, most notably in Pakistan where there are more than 300. They can also be found in Germany (100), the United States (150), Czech Republic (88) and Poland (67).
Factitious disorder imposed on another (FDIA), also known as fabricated or induced illness by carers (FII) and first named as Munchausen syndrome by proxy (MSbP) after Munchausen syndrome, is a mental health disorder in which a caregiver creates the appearance of health problems in another person - typically their child, and sometimes (rarely) when an adult falsely simulates an illness or health issues in another adult partner. This might include altering test samples, injuring a child, falsifying diagnoses, or portraying the appearance of health issues through contrived photographs, videos, and other ‘evidence’ of the supposed illness. The caregiver or partner then continues to present the person as being sick or injured, convincing others of the condition/s and their own suffering as the caregiver. Permanent injury or even death of the victim can occur as a result of the disorder and the caretaker’s actions. The behaviour is generally thought to be motivated by the caregiver or partner seeking the sympathy or attention of other people and/or the wider public.
Child Protective Services (CPS) is a government agency that investigates allegations of child abuse or neglect, and if confirmed, intervenes by providing services to the family through a safety plan, in-home monitoring, supervision, or placing the child in foster care which may involve removing them from the custody of their parent or legal guardian.
Leonard John Henry Arthur was a British doctor tried in the 1981 case of R v Arthur, for the attempted murder of John Pearson, a newborn child with Down's syndrome. He was acquitted.
Harry John Haiselden was an American physician and the Chief Surgeon at the German-American Hospital in Chicago, Illinois. Haiselden gained notoriety in 1915, when he refused to perform needed surgery for children born with severe birth defects and allowed the babies to die, in an act of eugenics. The film The Black Stork was made by him, about him, and starred him.
Child euthanasia is a form of euthanasia that is applied to children who are gravely ill or have significant birth defects. In 2005, the Netherlands became the first country since the end of Nazi Germany to decriminalize euthanasia for infants with hopeless prognosis and intractable pain. Nine years later, Belgium amended its 2002 Euthanasia Act to extend the rights of euthanasia to minors. Like adult euthanasia, there is world-wide public controversy and ethical debate over the moral, philosophical and religious issues of child euthanasia.
Coin-operated-locker babies or coin-locker babies are victims of child abuse often occurring in Japan, in which infants are left in public lockers. There are two main variables that account for the differences in frequency and the type of these child abuse cases: social and economical. Predominantly neonates and male babies, the murder of infants became a form of population control in Japan, being discovered 1–3 months after death, wrapped in plastic and appearing to have died of asphyxiation. The presumption is that such lockers are regularly checked by attendants and the infant will be found quickly; however, many children are found dead. Between 1980 and 1990, there were 191 reported cases of infants which died in coin-operated lockers, which represents about six percent of all infanticides during that period.
This disability rights timeline lists events relating to the civil rights of people with disabilities in the United States of America, including court decisions, the passage of legislation, activists' actions, significant abuses of people with disabilities, and the founding of various organizations. Although the disability rights movement itself began in the 1960s, advocacy for the rights of people with disabilities started much earlier and continues to the present.
Foster care is the term used for a system in which a minor who has been made a ward or a non-minor, typically aged 18–21, who volunteers for placement, is placed in a relative placement, a non-related extended family (NREFM) placement, a community family home, an institution, or a group home. Relative, NREFM, and community caregivers certified by the state are typically referred to as "foster parents," "kin caregivers," "resource parents," or other local terms. The placement of the child is usually arranged through state or county social services. The institution, group home, or caregiver is reimbursed for the expenses related to caring for the child. The state via the family court and child protection agency stand in loco parentis to the minor, making all legal decisions, while the caregiver is responsible for the day-to-day care of the minor. Even while their child is in Care, typically birth parents retain Education and Medical rights and the right to contact with their child unless parental rights are terminated by the Court.
Intersex people in Uganda face a dangerous environment, with significant gaps in protection from mutilation and non-consensual cosmetic medical interventions and protection from discrimination.
Baby M was the pseudonym of an Australian girl named Allison who was born with severe birth defects, whose treatment and eventual death caused significant controversy and international discussion about the medical ethics of disabled newborns. Right to Life activists accused her parents and the hospital of murdering the infant, leading to a lengthy legal inquest.
Prasanna Nair is an Indian-born doctor working in the United States. She works in primary health care with a specialty in pediatric endocrinology.
The murder of Mary Anne Welch was perpetrated by her parents Seth Welch and Tatiana Fusari. Mary, a 10-month old infant, died of malnutrition and dehydration in Solon Township, Kent County, Michigan on August 2, 2018. Both parents were convicted of first-degree murder after Mary's death was attributed to neglect.