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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 .

The case of Baby K.

Ms. H., the mother of Baby K., 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. The mother sought legal support to force the hospital to keep the baby alive. Ms. H. knew of her baby's condition from the second trimester of her pregnancy, but, 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.

At the trial , 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 concerns, 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 irreversability 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

• Anencephalic Babies page at Kennedy Institute of Ethics
• CDC page on Folic Acid
• Stress and Distress in Pediatric Nurses: The Hidden Tragedy of Baby K. by Ronald M. Perkin
• FIGO