Baby K
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Stephanie Keene (October 13, 1992 – April 5, 1995), better known by the pseudonym Baby K, was an
anencephalic Anencephaly is the absence of a major portion of the brain, skull, and scalp that occurs during embryonic development. It is a cephalic disorder that results from a neural tube defect that occurs when the rostral (head) end of the neural tube fail ...
baby who became the center of a major American
court case A legal case is in a general sense a dispute between opposing parties which may be resolved by a court, or by some equivalent legal process. A legal case is typically based on either civil or criminal law. In most legal cases there are one or mor ...
and a debate among
bioethicists Bioethics is both a field of study and professional practice, interested in ethical issues related to health (primarily focused on the human, but also increasingly includes animal ethics), including those emerging from advances in biology, med ...
.


History


Prenatal assessment

Stephanie Keene was born at Fairfax Hospital in Falls Church, Virginia, a hospital in the
Washington metropolitan area The Washington metropolitan area, also commonly referred to as the National Capital Region, is the metropolitan area centered on Washington, D.C. The metropolitan area includes all of Washington, D.C. and parts of the states of Maryland, Virgi ...
. At the time of her birth, she was missing most of her brain, including the cortex; only the brainstem, the portion of the brain responsible for autonomic and regulatory functions, such as the control of
respiration Respiration may refer to: Biology * Cellular respiration, the process in which nutrients are converted into useful energy in a cell ** Anaerobic respiration, cellular respiration without oxygen ** Maintenance respiration, the amount of cellul ...
, the heartbeat and blood pressure, had developed.


Opposing viewpoints

Keene's mother had been notified of her condition following
ultrasonography Ultrasound is sound waves with frequencies higher than the upper audible limit of human hearing. Ultrasound is not different from "normal" (audible) sound in its physical properties, except that humans cannot hear it. This limit varies fr ...
, and was advised to terminate the pregnancy by her
obstetrician Obstetrics is the field of study concentrated on pregnancy, childbirth and the postpartum period. As a medical specialty, obstetrics is combined with gynecology under the discipline known as obstetrics and gynecology (OB/GYN), which is a surgic ...
and
neonatologist Neonatology is a subspecialty of pediatrics that consists of the medical care of newborn infants, especially the ill or premature newborn. It is a hospital-based specialty, and is usually practised in neonatal intensive care units (NICUs). The ...
but chose to carry the child to term because of "a firm Christian faith that all life should be protected". The hospital believed that care provided to the baby would be futile, while the mother believed mechanical breathing support must be provided during the baby's periodic respiratory crises. Fairfax Hospital doctors strongly advised a "
do not resuscitate A do-not-resuscitate order (DNR), also known as Do Not Attempt Resuscitation (DNAR), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), no code or allow natural death, is a medical order, written or oral depending on country, indicating tha ...
" order for the child, which the mother refused. Stephanie remained on
ventilator A ventilator is a piece of medical technology that provides mechanical ventilation by moving breathable air into and out of the lungs, to deliver breaths to a patient who is physically unable to breathe, or breathing insufficiently. Ventilators ...
support for six weeks while Fairfax searched for another hospital to transfer her to, but no other hospital would accept her. After the baby was weaned off constant ventilator support, the mother agreed to move the child to a nursing facility, but the baby returned to the hospital many times for respiratory problems.


Legal proceedings

When baby Keene was admitted to the hospital at six months of age for severe respiratory problems, the hospital filed a legal motion to appoint a guardian for the child's care and sought a court order that the hospital did not need to provide any services beyond
palliative care Palliative care (derived from the Latin root , or 'to cloak') is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Wit ...
. At trial, several experts testified that providing ventilator support to an anencephalic infant went beyond the accepted standard of medical care.''Matter of Baby K.'', 16 F. 3d 590 ( 4th Cir. 1994). In contrast, the baby's mother argued her case on the grounds of religious freedom and the
sanctity of life In religion and ethics, the inviolability of life, or sanctity of life, is a principle of implied protection regarding aspects of sentient life that are said to be holy, sacred, or otherwise of such value that they are not to be violated. This ca ...
. In a controversial ruling, the
United States District Court for the Eastern District of Virginia The United States District Court for the Eastern District of Virginia (in case citations, E.D. Va.) is one of two United States district courts serving the Commonwealth of Virginia. It has jurisdiction over the Northern Virginia, Hampton ...
decided that the hospital caring for Keene must put her on a mechanical ventilator whenever she had trouble breathing. The court interpreted the
Emergency Medical Treatment and Active Labor Act The Emergency Medical Treatment and Active Labor Act (EMTALA) is an act of the United States Congress, passed in 1986 as part of the Consolidated Omnibus Budget Reconciliation Act (COBRA). It requires hospital emergency departments that accept pay ...
(EMTALA) to require continued ventilation for the infant. The wording of this act requires that patients who present with a
medical emergency A medical emergency is an acute injury or illness that poses an immediate risk to a person's life or long-term health, sometimes referred to as a situation risking "life or limb". These emergencies may require assistance from another, qualified ...
must get "such treatment as may be required to stabilize the medical condition" before the patient is transferred to another facility. The court refused to take a moral or
ethical Ethics or moral philosophy is a branch of philosophy that "involves systematizing, defending, and recommending concepts of right and wrong behavior".''Internet Encyclopedia of Philosophy'' The field of ethics, along with aesthetics, concerns ma ...
position on the issue, insisting that it was only interpreting the laws as they existed. As a result of the decision, Keene was kept on the respirator much longer than most anencephalic babies. It has been suggested by the dissenting judge in the case that the court should have used the condition anencephaly as the basis of the case, not the recurring subsidiary symptoms of respiratory distress. As the irreversibility of anencephaly is widely understood in the medical community, he argued that the decision to continue futile care only resulted in the repetitive diversion of medical equipment. Keene's cardiac death occurred on April 5, 1995, at Fairfax Hospital, at age 2 years 174 days. (Registration required)


Significance

The case of Baby K is of particular importance to the field of
bioethics Bioethics is both a field of study and professional practice, interested in ethical issues related to health (primarily focused on the human, but also increasingly includes animal ethics), including those emerging from advances in biology, m ...
because of the issues it raises: the definition of death, the nature of
personhood Personhood or personality is the status of being a person. Defining personhood is a controversial topic in philosophy and law and is closely tied with legal and political concepts of citizenship, equality, and liberty. According to law, only a l ...
, the concept of
futile medical care Futile medical care is the continued provision of medical care or treatment to a patient when there is no reasonable hope of a cure or benefit. Some proponents of evidence-based medicine suggest discontinuing the use of any treatment that has not ...
, and many issues relating to the allocation of scarce resources. Some commentators, including Arthur Kohrman and Jacob Appel, have argued that the ruling effectively undermined the right of physicians to make sound medical decisions.


See also

*
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, regardles ...


References


External links


Futile Care and the Neonate: In the Matter of Baby K
at Medscape {{DEFAULTSORT:Baby K 1992 births 1995 deaths Medical controversies in the United States K Child deaths