A 10-day-old Oregon infant with severe brain damage died Thursday in the midst of a court fight over her parents' right to refuse to allow the baby to be fed intravenously.
The case was the first public test of the issues involved in the federal government's "Baby Doe" rule, which went into effect two months ago. The rule was intended to protect handicapped infants from being starved or negligently treated because of their deformity.
The rule has since been struck down by a federal court, but the Department of Health and Human Services is appealing the decision.
All sides in the case, including the Oregon Right to Life group which took the parents to court, agreed that the infant would die soon regardless of what treatment was given. Doctors familiar with the case said she had no sucking or swallowing reflex and could not eat without special intravenous or force-feeding. The infant's brain was only partly intact. She was apparently unable to see or hear.
Rita Radich of the Oregon Right to Life group said yesterday that though she knew the baby could not live, "We wanted to show that the child should not be starved to death. We heard there was a doctor's recommendation to the parents not to feed the child because the child would die sooner. We felt it was no more appropriate to starve the child than to inject it with something that would kill her outright, which everyone agrees is not proper."
Radich said, "We were successful in our major objective here" in that the court ordered the infant fed intravenously and kept on life-sustaining equipment until the case could be decided on the merits.
"This child could not live very long anyway," Radich said, but she hoped to establish the principle about feeding, "because this same recommendation is given even in cases where much less handicapped children are involved."
William Bernstein, president of the Coos County Medical Society and one of the doctors called to consult on the case, said, "The decision about what to do with this kind of case is very personal and very difficult . . . and the doctors and families resent the outside influence from the government or others."
Karen Green, a state assistant attorney general for the Children's Services Department, said the reaction to the intervention of Oregon Right to Life was "outrage . . . that a family which had the trauma of having a deformed child in the first place should then be dragged into court and have it suggested that they are not being proper parents . . . . The people I have spoken to are unhappy," she said.
The infant was born about dawn on April 11 in Coquille Hospital in Coos County, Ore. The girl's skull had not grown together properly, and a membrane sac containing fluids and some primitive brain parts hung from the back of her head.
Her massive brain damage curtailed a number of the infant's bodily functions. She died Thursday afternoon when her breathing stopped because her damaged brain could not maintain it.
But a week before she died, Radich received a telephone tip that an infant at Coquille was not being fed because of her deformity. Radich said she called the Children's Service Division of the state health department and the Health and Human Services Department Washington hotline established to deal with cases of alleged discrimination against handicapped infants.
According to a hospital spokesman, there was never an attempt to starve the baby. Bernstein, who was consulted on the case but did not examine the infant, said there were attempts to feed the infant by mouth but the she could not eat.
Judge Richard Barron of the circuit court in Coquille heard the case, and based on the testimony of the attending doctor, Peter Wolfe, determined that there was not enough evidence to establish any negligence in the case. But he ordered intravenous feeding to be attempted while the case was appealed.
State Court of Appeals Judge William Richardson then also ordered the feeding continued while the case was argued.
Meanwhile, the infant was taken from the 30-bed Coquille hospital to the Doernbecher hospital of the Oregon Health Science University in Portland, 229 miles away.
David Lillig, North Bend public defender and attorney for the parents, said the right to life group had no right to represent the infant in court, and that the infant's parents were upset by this.
He said the decision to withhold intravenous feeding and other treatments was taken after getting "the best medical advice in the state."
The federal government flew investigators to Oregon to question witnesses, and will carry on the investigation even though the infant has died.