Court rules for brain-damaged baby

September 24, 1993|By New York Times News Service

WASHINGTON -- In a case raising timely issues of health care policy as well as profound questions of medical ethics, a hospital suburban Virginia is appealing a Federal District Court's ruling that it must continue to provide life-sustaining treatment for a baby born there 11 months ago with most of her brain missing.

The condition, a congenital defect known as anencephaly, is incurable and quickly fatal without medical intervention. An anencephalic baby has a brain stem, which keeps the heart and other organs working for a time. The baby does not meet the legal definition of brain death. Lacking a cortex, it is permanently unconscious, without sensation or cognitive functions.

The mother in this case, acting out of a "firm Christian faith that all life should be protected," as the court's opinion described her position, has insisted that everything be done to keep the baby alive. The baby, who is being cared for in a nurs

ing home, has periodic respiratory crises, requiring readmission to the hospital's pediatric intensive care unit and the aid of a mechanical ventilator to breathe during those crises.

Although many details of the case have been kept secret under a protective order issued by the court, it has galvanized medical ethics experts around the country who have learned of it. They are watching with fascination and concern to see whether the long-running debate over patient autonomy and the "right to die" is about to take a new turn.

It is almost unheard of for an anencephalic baby to live as long as this one has, and doctors and lawyers familiar with the case say they know of no other instance of a parent insisting on continued treatment under these circumstances.

The mother has rejected the recommendations of doctors in the case as well as those of a specially appointed panel of the hospital's ethics committee that no further treatment be undertaken. She had rejected doctors' recommendations to have an abortion when the anencephaly was

diagnosed before the baby was born at Fairfax Hospital in Falls Church, Va., on Oct. 13.

The hospital, which was uncertain of its legal liability under federal law if it overrode the mother's wishes, took the case to Federal District Court in Alexandria, Va., last spring. The hospital asked for a declaration that it would not be violating any of several federal laws governing either hospital admissions or discrimination against the handicapped if it refused to provide treatment the next time the baby needed it.

To the hospital's astonishment, Federal District Judge Claude M. Hilton ruled on July 1 that the hospital's refusal to treat the baby's next respiratory crisis would violate not only three federal laws, including the recently enacted Americans With Disabilities Act, but would also violate the mother's constitutional right under the 14th Amendment's due process clause to "bring up children" in the way she thinks best.

An appeal is to be argued next month before the 4th U.S. Circuit Court of Appeals in Richmond.

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