Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, September 26, 1993 TAG: 9309260092
SECTION: VIRGINIA PAGE: B4 EDITION: STATE
SOURCE: The Washington Post
DATELINE: WASHINGTON LENGTH: Medium
The case of "Baby K," as the infant is known in federal courts, has become an emotional tug of war over issues such as parents' rights, medical ethics and who should decide what is proper medical treatment for a patient.
So far, the baby's mother is winning.
A federal judge has ruled that the hospital, regardless of its misgivings, must follow the mother's wishes and keep the baby alive by providing treatment to aid breathing during occasional life-threatening emergencies. The hospital is appealing the decision.
Baby K, born with a congenital defect known as anencephaly that left her with a brain stem but no cerebral cortex, now lives at a nursing home but needs hospital care when she has respiratory failure. The child, who is unconscious, has spent about 120 days at the hospital, at a minimum cost of $1,450 a day. The baby's treatment is covered by the mother's medical insurance.
The mother, according to the ruling by U.S. District Judge Claude M. Hilton, has a strong Christian faith and believes "that all life is sacred and must be protected." She "believes that God will work a miracle if that is his will. Otherwise, [the mother] believes God, and not other humans, should decide the moment of her daughter's death," the judge wrote.
During the pregnancy, according to the ruling, the mother learned that the child had the defect but rejected the advice of her doctors to have an abortion.
The case is being watched by lawyers and ethicists across the nation because it marks a new twist in the fight over treatment of the hopelessly ill. Specialists said they recalled only a handful of cases in which families have sought to keep someone alive against the medical advice of doctors.
"Here's a court saying we must continue treatment for a baby with almost no brain, regardless of its cost," said Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota.
"I can't think of a more telling set of polar extremes," Caplan said. "The president and Congress are saying we must restrict our costs, and the court is saying . . . we will allow a single mother to defy the opinion of doctors and continue care in what must arguably be the most hopeless of circumstances."
Except for the court's ruling, records in the Baby K case are under seal in a vault at the federal court in Alexandria. The mother is known only as "Ms. H" and the father as "Mr. K." They are not married and do not agree about the medical treatment for the child. The father supports the hospital.
According to doctors, 1,000 to 2,000 babies are born in the United States each year with anencephaly, but they rarely live longer than a few months.
In his ruling, the judge found that Baby K's condition is a disability and that the hospital could not legally refuse treatment because of it, citing constitutional protections and laws such as the Americans With Disabilities Act. He also said the mother had a constitutional right to make decisions about her child.
Ellen Flannery, an attorney for the mother, said the woman visits Baby K daily, adding, "She loves the child and thinks the child's life is precious."
Fairfax Hospital released a statement Friday that said, "We believe that continuing to provide extraordinary measures to prolong the dying process is medically and ethically inappropriate, and not in the best interests of this infant . . . The hospital and its physicians remain ready to provide appropriate medical care, which in this case includes nutrition, hydration and warmth."
Baby K is not currently on life-sustaining equipment, according to the nursing home's administrator, who asked not to be identified. But the child has required the use of a ventilator to aid her breathing several times since her birth and has been taken back to Fairfax Hospital on several occasions.
Within days of the baby's birth last October, the hospital urged the mother to permit them to discontinue use of the ventilator, but the mother refused, Hilton wrote in the ruling. Eventually, doctors took the matter to the hospital's ethics committee, which decided that treatment should end, the ruling said. The mother remained adamant about continuing care and rejected the committee's recommendations.
The hospital, concerned about legalities, filed the lawsuit in January seeking the backing of the court to terminate the treatment.
A lawyer appointed by the court to represent the baby's interests has sided with the hospital, and the American Academy of Pediatrics filed a supporting brief.
But the Virginia Department for Rights of Virginians With Disabilities, a state agency, provided legal assistance to the mother and argued that the child has a right to treatment. "The bottom line here is that human life is to be protected," ReNee D. Brooks, a lawyer for the agency, said Friday.
by CNB