- Baby K
Baby K was born in an anencephalic state on
October 13, 1992, at Fairfax Hospital in Virginia. That is, she was born missing almost all of her brain. In fact, all that remained of her brain was the brainstem, that primitive part of the brain responsible (in part) for autonomic and regulatory function, such as the control of respiration, the heartbeatand blood pressure .
The case of Baby K.
Despite being aware of the baby's condition prior to birth, [""] Ms. H., the mother of Baby K., carried the child to term, in spite of medical advice to abort. Motivated by a strong religious conviction that "all life is precious" and that
Godalone should decide how long the baby would live, [Flannery, E. (1995) One advocate’s viewpoint: conflict and tensions in the Baby K case. Journal of Law, Medicine & Ethics, 23: 7-12] she remained adamant that Baby K. be kept alive as long as possible. The hospital’s position was that such care would be futile.Fact|date=November 2007
Ms. H. wanted the hospital to continue with advanced supportive care (primarily ventilatory support), despite the generally accepted medical practice that anencephaly is not curable or treatable, and that maintained life support would be both futile and wasteful.Fact|date=November 2007 Fairfax Hospital doctors advised a
Do Not Resuscitatecondition for the child. The mother refused the DNR. Baby K. was left on ventilatorsupport for 6 weeks while Fairfax searched for another hospital to transfer her to, but all area hospitals claimed they had no roomFact|date=February 2007 (which is believed to be not entirely true; that in actuality no other hospital wanted to take over the futile medical careexpectations and legal issues surrounding the child).Fact|date=February 2007
After the baby came off of constant ventilator support, Ms. H. agreed to move the child to a nursing facility, but the baby returned to the hospital many times for respiratory problems.
At 6 months old, Baby K. was admitted to the hospital for severe respiratory problems. The hospital filed a legal motion to appoint a guardian for the child's care, and to declare that the hospital did not need to provide any services beyond
At the trial [Matter of Baby K. 16 F.3d 590 (4th Cir.
1994), n. 9 at 598.] , expert testimony was given to demonstrate that provision of ventilator support for anencephalic infants goes beyond the accepted standard of care. The legal team for Baby K's mother adhered to a religious sanctity of lifeprinciple as the basis for their case. In a particularly controversial decision, the United States District Court for the Eastern District of Virginiaruled that the hospital caring for Baby K 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 emergencymust 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, Baby K was kept alive much longer than most anencephalic babies, living to age 2½.
Some commentatorsWho|date=November 2007 on the decision argue that it effectively turned doctors into mere "instruments of technology"Fact|date=November 2007, and took away a doctor's prerogative to make responsible, utilitarian medical decisions.Fact|date=November 2007
Effects of Baby K. case
The case of Baby K. is of particular importance to clinical
bioethicsbecause of the rich variety of issues it raises: defining death, the nature of personhood, the notion of moral standing, medical futility, caregiverissues, resource allocation concerns and much more.
The dissenting judge in the legal case argued 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 highly accepted in the medical community, he argued that the decision to continue (futile) care only resulted in irresponsible use of medical resourcesFact|date=November 2007, and prolonged suffering.Fact|date=November 2007
* [http://www.medscape.com/viewarticle/464018_4 Futile Care and the Neonate: In the Matter of Baby K] at Medscape
* [http://www.georgetown.edu/research/nrcbl/hsbioethics/unit1_3.htm Anencephalic Babies] page at Kennedy Institute of Ethics
* [http://www.llu.edu/llu/bioethics/update12_2.htm Stress and Distress in Pediatric Nurses: The Hidden Tragedy of Baby K.] by Ronald M. Perkin
* [http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1078983 Thaddeus Mason Pope, Involuntary Passive Euthanasia in U.S. Courts: Reassessing the Judicial Treatment of Medical Futility Cases, 9 MARQUETTE ELDER'S ADVISOR 229-68 (2008)]
* [http://www.md.huji.ac.il/figo/figo5.htm FIGO]
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