Court Is Right to Bow to Parents : They Must Decide If Heroic Measures in Child’s Best Interest

Last Monday, the U.S. Supreme Court threw out the so-called Baby Doe regulations under which federal officials had intervened in treatment decisions about seriously ill newborns.

On Tuesday the body of 2-week-old Frank Edward Clemshaw Jr. was flown from Michigan to California, where physicians at Loma Linda Medical Center transplanted his heart into Baby Jesse, another 2-week-old boy whose life-threatening cardiac condition and the hospital’s original refusal to admit him into its transplant program had been front-page news the previous week.

On the surface, these appear to ironically contrast cold insensitivity to the welfare of seriously ill babies with heroic efforts to save the lives of such infants.

But don’t be misled by appearances. The measures being used in the attempt to save Baby Jesse’s life are still research techniques. This is only the fifth neonatal heart transplant the Loma Linda physicians have done since they first gained attention in October, 1984, by transplanting a baboon’s heart into Baby Fae, who also suffered from hypoplastic left heart syndrome.

This defect, in which the left side of the heart is too small to pump enough blood to sustain life for more than a few weeks, occurs once in every 12,000 live births. The parents of most children born with this problem decide not to put them through a heart transplant or other experimental surgical techniques. In deciding so, they are weighing the relative burdens to the child against the possibility of survival.

It is just such parental decision-making--ideally undertaken after full information about all alternatives has been provided--that the Supreme Court did not want to have interrupted by federal “Baby Doe Squads.” Evidence in the litigation over the Baby Doe rules made clear that it was often difficult for physicians and nurses to render appropriate care once the squads arrived.

Yet in all their investigations (many triggered by anonymous phone tips on a toll-free “hot line” to the U.S. Department of Health and Human Services), the federal squads never documented a single case of discriminatory denial of necessary medical care to an infant because of its handicaps. Without evidence that hospitals were refusing to treat handicapped infants, the court concluded that the government could not rest its Baby Doe regulations on a 1973 statute that threatens to withdraw all federal funds from institutions that discriminate against handicapped persons.

That does not mean that infants with serious problems are left to medical or parental whims, however. In the fall of 1984, after the Baby Doe rules had been enjoined by a federal appellate court, Congress worked out compromise legislation amending the statutes that provide financial support for the state agencies that deal with child abuse and neglect.

The new law requires that these agencies, as a condition of receiving funds, must define the withholding of “medically indicated treatment” from infants with life-threatening conditions as a form of “neglect.” The agencies must also specify the means by which they will investigate cases and go to court when necessary to get an order for treatment. Thus the Supreme Court’s decision will have much less impact than it would have had three years ago when the first Baby Doe regulations were issued.

Unlike the Indiana case, where the child had a surgically correctable problem (a blocked esophagus) but treatment was withheld simply because of a noncorrectable handicap (mental retardation), most cases involve hard decisions in which the infant’s “handicap” is his life-threatening condition--typically as a result of being a very low birth-weight premature baby, with a cascade of complications that alter the prognosis for survival from day to day or even hour to hour. Indeed, Baby Jesse’s congenital heart condition is more representative: If high-risk, frontier treatments work, the child is likely to emerge with few lifetime problems. But the chance of success may be less than the chance of prolonging a painful dying process, especially when the treatments are medical rather than surgical.

The Supreme Court was right to say that the delicate decisions about when and how to treat the Baby Does of this nation are better left to parents and physicians, operating against the background of state laws that protect all vulnerable people against homicide or medical neglect.

If there is any irony in the baby stories last week, then, it isn’t in a contrast between the Supreme Court and Loma Linda--since both wanted to promote infants’ best interests. The real irony is that it was probably the original refusal of the Loma Linda team to take Baby Jesse into the transplant program that ended up ensuring that he got his new heart. The Michigan parents were motivated because of the nationwide publicity that arose from the controversial refusal. Of course, publicity is a rather weak reed on which to rest national transplant procedures, but that’s another story.