Essay: The Using of Baby Fae

The placing of a baboon heart into the chest of little Baby Fae caused indignation in many quarters. For some, who might safely be called eccentric, the concern was animal rights. Pickets outside Loma Linda University Medical Center and elsewhere protested the use of baboons as organ factories. Dr. Leonard Bailey, the chief surgeon, was not impressed. “I am a member of the human species,” he said. Human babies come first. It was unapologetic speciesism. He did not even have to resort to sociology, to the argument that in a society that eats beef, wears mink and has for some time been implanting pigs’ valves in human hearts, the idea of weighing an animal’s life equally against a human baby’s is bizarre.

Others were concerned less with the integrity of the donor than with the dignity of the recipient. At first, before Baby Fae’s televised smile had beguiled skeptics, the word ghoulish was heard: some sacred barrier between species had been broken, some principle of separateness between man and animal violated. Indeed, it is a blow to man’s idea of himself to think that a piece of plastic or animal tissue may occupy the seat of the emotions and perform perfectly well (albeit as a pump). It is biological Galileism, and just as humbling. Nevertheless it is fact. To deny it is sentimentality. And to deny life to a child in order to preserve the fiction of man’s biological uniqueness is simple cruelty.

Still others were concerned with the rights of the observing public, and its proxy, the press. For a while, when Baby Fae was doing well, the big issue was made out to be the public’s (read: the press’s) right to know. There were reiterated complaints about withheld information, vital forms not made public, too few press conferences. It is true that in its first encounter with big-time media Loma Linda proved inept at public relations. But how important can that be? In time the important information will be published and scrutinized in the scientific literature, a more reliable setting for judging this procedure than live television.

Baby Fae brought out defenders of man, beast and press. But who was defending Baby Fae? There was something disturbing—subtly, but profoundly disturbing—about the baboon implant. It has nothing to do with animal rights or the Frankenstein factor or full disclosure. It has to do with means and ends.

It turns out that before placing a baboon heart into the chest of Baby Fae, doctors at Loma Linda had not sought a human heart for transplant. That fact betrays their primary aim: to advance a certain line of research. As much as her life became dear to them, Baby Fae was to be their means.

The end—cross-species transplant research—is undoubtedly worthy. Human transplants offer little hope for solving the general problem of children’s dying of defective hearts. There simply are not enough human hearts to go around. Baboons grown in captivity offer, in theory, a plausible solution to the problem. To give Baby Fae a human heart would have advanced the cause of children in general very little. But it might have advanced the cause of this child more than a baboon’s heart, which, given the imperfect state of our knowledge, was more likely to be rejected.

Doctors like to imagine that the therapeutic imperative and the experimental imperative are one and the same. On the contrary. They are almost always in conflict. At the extreme are the notorious cases in which the patient is actually sacrificed on the altar of science: the Tuskegee experiment, in which a group of black men with syphilis were deliberately left untreated for 40 years; the Willowbrook experiment, in which retarded children were injected with hepatitis virus; and the Brooklyn study in which elderly patients were injected with live cancer cells. Loma Linda was at the other extreme. Here, far from being at war with the therapeutic, the experimental was almost identical with it. But not quite. The baboon heart was ever so slightly more experimental, more useful to science (or so the doctors thought), more risky for Baby Fae. If it were your child, and you had two hearts available, and you cared not a whit for science (perhaps even if you cared quite a bit for science), you would choose the human heart.

The Loma Linda doctors did not. Hence the unease. One does not have to impute venal motives—a desire for glory or a lust for publicity—to wonder about the ethics of the choice. The motive was science, the research imperative. Priority was accorded to the claims of the future, of children not yet stricken, not yet even born.

Is that wrong?

Civilization hangs on the Kantian principle that human beings are to be treated as ends and not means. So much depends on that principle because there is no crime that cannot be, that has not been, committed in the name of the future against those who inhabit the present. Medical experimentation, which invokes the claims of the future, necessarily turns people into means. That is why the Nuremberg Code on human experimentation (established after World War II in reaction to the ghastly Nazi experiments on prisoners) declares that for research to be ethical the subject must give consent. The person is violated if it is unwillingly—even if only uncomprehendingly—used for the benefit of others.

But not if it volunteers, and thus, in effect, joins the research enterprise. Consent is the crucial event in the transition from therapy to experiment. It turns what would otherwise be technological barbarism into humane science. Consent suspends the Hippocratic injunction “First, do no harm.” Moreover, it redeems not only the researcher but the researched. To be used by others is to be degraded; to give oneself to others is to be elevated. Indeed, consciously to make one’s life the instrument of some higher purpose is the essence of the idea of service. If Barney Clark decides to dedicate his last days to the service of humanity, then—and only then—may we operate.

Infants, who can decide nothing, are the difficult case. (If Baby Fae had volunteered for her operation, the ethical questions would evaporate.) Since infants are incapable of giving consent, the parents do so on their behalf. In Baby Fae’s case what kind of consent did they give? If her parents thought that the operation might save their child (i.e., that it was therapeutic), they were misled. There was no scientific evidence to support that claim. The longest previous human survival with a heart xenograft was 3½ days. (Baby Fae lived 17 more.) The longest animal survival in Dr. Bailey’s own studies was 165 days.

If, on the other hand, the parents had been told that the purpose was to test a procedure that might help other babies in the future (i.e., that it was experimental), what right did they have to volunteer a child—even their child—to suffer on behalf of humanity?

After Baby Fae died, it was argued, retroactively, that in fact the operation reduced her suffering, that she was pink and breathing instead of blue and gasping. Perhaps. But the cameras were brought in only when she was well. She was not seen when not doing well: enduring respirators, cannulas, injections, stitches, arrhythmias, uremia. Was this really less agonal than a natural death, which would have come mercifully weeks earlier?

No. Baby Fae was a means, a conscripted means, to a noble end. This experiment was undertaken to reduce not her suffering, but, perhaps some day, that of others. But is that really wrong? Don’t the suffering babies of the future have any claim on us? How do we reconcile the need to advance our knowledge through research, with the injunction against using innocents for our own ends?

Two serious men have attempted an answer. One is Jonas Salk. “When you inoculate children with a polio vaccine,” he said of his early clinical tests, “you don’t sleep well for two or three months.” So Salk tested the vaccine on himself, his wife and his own children. This is an extraordinary response. It certainly could not have improved his sleep. It did not even solve the ethical dilemma. After all, the Salk children were put at risk, and they were no less innocent than the rest. But by involving his own kin (and himself), Salk arranged to suffer with the others if his science failed. He crossed the line that separates user from used. By joining his fate to the used, he did not so much solve the ethical problem as turn it, heroically, into an existential one.

Princeton Philosopher Paul Ramsey offers another version of that response. Ramsey comes from the other side of the great research debate. He argues that children may never be made guinea pigs and that we have no right to “consent” on their behalf. A most stringent Kantian, he would prohibit all experimentation on nonconsenting subjects. But for those of us who see the requirement for research as a moral imperative equal in force to the imperative to respect the individual, he counsels: if you must do it, do it, but do not deny the moral force of the imperative you violate. In a society that grants the future some claims, a society that will not countenance the endless destruction of children by polio — or by hypoplastic left-heart syndrome — ” research medicine, like politics, [becomes] a realm in which men have to ‘sin bravely.’ ” Baby Fae lived, and died, in that realm. Only the bravery was missing: no one would admit the violation. Bravery was instead fatuously ascribed to Baby Fae, a creature as incapable of bravery as she was of circulating her own blood. Whether this case was an advance in medical science awaits the examination of the record by the scientific community. That it was an adventure in medical ethics is already clear.

— By Charles Krauthammer