Baby K
Encyclopedia
Baby K was an anencephalic
baby who became the center of a major U.S. court case and a debate among bioethicists
.
in Virginia
, USA. At the time of her birth, she was missing most of her brain, including the cortex; only the brainstem had developed during pregnancy, the portion of the brain responsible for autonomic and regulatory functions, such as the control of respiration
, the heartbeat
and blood pressure
.
. The mother's viewpoint was that mechanical breathing support must be provided during the baby's periodic respiratory crises. Fairfax Hospital doctors strongly advised a do not resuscitate
order for the child, which the mother refused. Stephanie remained on ventilator support for 6 weeks while Fairfax searched for another hospital to which to transfer, but no other hospital was willing to 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.
decided that the hospital caring for Stephanie must put her on a mechanical ventilator whenever she had trouble breathing. The court interpreted the Emergency Medical Treatment and Active Labor Act
(EMTALA) to require continued ventilation for the infant. The wording of this act requires that patients who present with a medical emergency
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
position on the issue, insisting that it was only interpreting the laws as they existed. As a result of the decision, Stephanie was kept alive 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.
Stephanie Keene died April 5, 1995, at Fairfax Hospital, at age 2 years 174 days.
because of the issues it raises: the definition of death, the nature of personhood, the concept of medical futility
, 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.
Anencephaly
Anencephaly is a cephalic disorder that results from a neural tube defect that occurs when the cephalic end of the neural tube fails to close, usually between the 23rd and 26th day of pregnancy, resulting in the absence of a major portion of the brain, skull, and scalp...
baby who became the center of a major U.S. court case and a debate among bioethicists
Bioethics
Bioethics is the study of controversial ethics brought about by advances in biology and medicine. Bioethicists are concerned with the ethical questions that arise in the relationships among life sciences, biotechnology, medicine, politics, law, and philosophy....
.
Prenatal assessment
Stephanie Keene, better known by the pseudonym Baby K, was born at Fairfax HospitalInova Fairfax Hospital
Inova Fairfax Hospital is the largest hospital in the Washington D.C. area. Located in Fairfax County, Virginia, Inova Fairfax Hospital is the flagship hospital of Inova Health System, one of the largest employers in Fairfax County...
in Virginia
Virginia
The Commonwealth of Virginia , is a U.S. state on the Atlantic Coast of the Southern United States. Virginia is nicknamed the "Old Dominion" and sometimes the "Mother of Presidents" after the eight U.S. presidents born there...
, USA. At the time of her birth, she was missing most of her brain, including the cortex; only the brainstem had developed during pregnancy, the portion of the brain responsible for autonomic and regulatory functions, such as the control of respiration
Respiration (physiology)
'In physiology, respiration is defined as the transport of oxygen from the outside air to the cells within tissues, and the transport of carbon dioxide in the opposite direction...
, the heartbeat
Cardiac cycle
The cardiac cycle is a term referring to all or any of the events related to the flow or blood pressure that occurs from the beginning of one heartbeat to the beginning of the next. The frequency of the cardiac cycle is described by the heart rate. Each beat of the heart involves five major stages...
and blood pressure
Blood pressure
Blood pressure is the pressure exerted by circulating blood upon the walls of blood vessels, and is one of the principal vital signs. When used without further specification, "blood pressure" usually refers to the arterial pressure of the systemic circulation. During each heartbeat, BP varies...
.
Opposing viewpoints
The baby's mother had been notified of her condition following an ultrasound, and had been advised to terminate the pregnancy by her obstetrician and neonatologist but chose to carry the child to term because of "a firm Christian faith that all life should be protected". The hospital's viewpoint was that care provided to the baby would be futileFutile medical care
Futile medical care refers to the belief that in cases where there is no hope for improvement of an incapacitating condition that no course of treatment is called for. It is distinct from the idea of euthanasia because euthanasia involves active intervention to end life, while withholding futile...
. The mother's viewpoint was that mechanical breathing support must be provided during the baby's periodic respiratory crises. Fairfax Hospital doctors strongly advised a do not resuscitate
Do not resuscitate
In medicine, a "do not resuscitate" or "DNR" is a legal order written either in the hospital or on a legal form to respect the wishes of a patient to not undergo CPR or advanced cardiac life support if their heart were to stop or they were to stop breathing...
order for the child, which the mother refused. Stephanie remained on ventilator support for 6 weeks while Fairfax searched for another hospital to which to transfer, but no other hospital was willing to 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 Stephanie 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. At trial, several experts testified that providing ventilator support to an anencephalic infant went beyond the accepted standard of medical care. In contrast, the baby's mother argued her case on the grounds of religious freedom and the sanctity of life. In a controversial ruling, the United States District Court for the Eastern District of VirginiaUnited States District Court for the Eastern District of Virginia
The United States District Court for the Eastern District of Virginia is one of two United States district courts serving the Commonwealth of Virginia...
decided that the hospital caring for Stephanie must put her on a mechanical ventilator whenever she had trouble breathing. The court interpreted the Emergency Medical Treatment and Active Labor Act
Emergency Medical Treatment and Active Labor Act
The Emergency Medical Treatment and Active Labor Act is a U.S. Act of Congress passed in 1986 as part of the Consolidated Omnibus Budget Reconciliation Act . It requires hospitals to provide care to anyone needing emergency healthcare treatment regardless of citizenship, legal status or ability to...
(EMTALA) to require continued ventilation for the infant. The wording of this act requires that patients who present with a medical emergency
Medical emergency
A medical emergency is an injury or illness that is acute and poses an immediate risk to a person's life or long term health. These emergencies may require assistance from another person, who should ideally be suitably qualified to do so, although some of these emergencies can be dealt with by the...
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
Morality
Morality is the differentiation among intentions, decisions, and actions between those that are good and bad . A moral code is a system of morality and a moral is any one practice or teaching within a moral code...
or ethical
Ethics
Ethics, also known as moral philosophy, is a branch of philosophy that addresses questions about morality—that is, concepts such as good and evil, right and wrong, virtue and vice, justice and crime, etc.Major branches of ethics include:...
position on the issue, insisting that it was only interpreting the laws as they existed. As a result of the decision, Stephanie was kept alive 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.
Stephanie Keene died April 5, 1995, at Fairfax Hospital, at age 2 years 174 days.
Significance
The case of Baby K is of particular importance to the field of bioethicsBioethics
Bioethics is the study of controversial ethics brought about by advances in biology and medicine. Bioethicists are concerned with the ethical questions that arise in the relationships among life sciences, biotechnology, medicine, politics, law, and philosophy....
because of the issues it raises: the definition of death, the nature of personhood, the concept of medical futility
Futile medical care
Futile medical care refers to the belief that in cases where there is no hope for improvement of an incapacitating condition that no course of treatment is called for. It is distinct from the idea of euthanasia because euthanasia involves active intervention to end life, while withholding futile...
, and many issues relating to the allocation of scarce resources. Some commentators, including Arthur Kohrman and Jacob Appel
Jacob M. Appel
Jacob M. Appel is an American author, bioethicist and social critic. He is best known for his short stories, his work as a playwright, and his writing in the fields of reproductive ethics, organ donation, neuroethics and euthanasia....
, have argued that the ruling effectively undermined the right of physicians to make sound medical decisions.
External links
- Futile Care and the Neonate: In the Matter of Baby K at MedscapeMedscapeMedscape is a web resource for physicians and other health professionals. It features peer-reviewed original medical journal articles, CME , a customized version of the National Library of Medicine's MEDLINE database, daily medical news, major conference coverage, and drug information—including a...