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 heartbeat and blood pressure [1].

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 God alone should decide how long the baby would live, she remained adamant that Baby K. be kept alive as long as possible. The hospital’s position was that such care would be futile.

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. Fairfax Hospital doctors advised a Do Not Resuscitate condition for the child. The mother refused the DNR. Baby K. was left on ventilator support for 6 weeks while Fairfax searched for another hospital to transfer her to, but all area hospitals claimed they had no room (which is believed to be not entirely true; that in actuality no other hospital wanted to take over the futile medical care expectations and legal issues surrounding the child).

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 palliative care.

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 life principle as the basis for their case. In a particularly controversial decision, the U. S. District Court ruled 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 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, Baby K was kept alive much longer than most anencephalic babies, living to age 2½ .

Some commentators on the decision argue that it effectively turned doctors into mere "instruments of technology", and took away a doctor's prerogative to make responsible, utilitarian medical decisions.

Effects of Baby K. case

The case of Baby K. is of particular importance to clinical bioethics because of the rich variety of issues it raises: defining death, the nature of personhood, the notion of moral stranding, medical futility, caregiver issues, 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 resources, and prolonged suffering.

External links

• Futile Care and the Neonate: In the Matter of Baby K (http://www.medscape.com/viewarticle/464018_4) at Medscape
• Anencephalic Babies (http://www.georgetown.edu/research/nrcbl/hsbioethics/unit1_3.htm) page at Kennedy Institute of Ethics
• CDC page on Folic Acid (http://www.cdc.gov/ncbddd/folicacid/default.htm)
• Stress and Distress in Pediatric Nurses: The Hidden Tragedy of Baby K. (http://www.llu.edu/llu/bioethics/update12_2.htm) by Ronald M. Perkin
• FIGO (http://www.md.huji.ac.il/figo/figo5.htm)