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The Boy in the Bubble | Article

Bioethics Opinions

David sits with fireman hat | Baylor College of Medicine Archives

"To those who measure life by production, this life was a total and complete waste," began Reverend Laurence Connelly's eulogy. He continued, "But to those who measure life by giving and receiving, David's life was one of the fullest I've ever known."

David Phillip Vetter was born with severe combined immunodeficiency (SCID) and lived the twelve years of his life in a plastic isolator bubble to protect him from the germs his body was unable to combat. To this day, his life and medical care raise ethical issues that are the more compelling for being impossible to resolve.

Isolated from Disease
Kenneth Vaux, who was a professor of ethics at Baylor College of Medicine when David was born, wrote an opinion piece for the Chicago Tribune following David's death. In the essay he supported the decisions that David's parents and caretakers made and suggested that our discomfort with the situation arose because David's perfect isolation from disease implied a possible immortality, forcing us to reconsider our own inevitable deaths. Furthermore, Vaux indicated that the pre-natal detection of SCID in the boy served as a harbinger for practical eugenics.

A Living Experiment?
While these are important issues, what other observers found more disturbing is that David may have been, as Vaux plainly stated, a "living experiment" and "an involuntary guinea pig." Moreover, while David's condition at age 12 may seem to latter-day observers to have been untenable, it is impossible to judge which options should or even could have been taken to prevent the situation.

The initial decision came before David's conception. Reverend Raymond J. Lawrence, director of clinical pastoral education at Texas Children's Hospital during the first four years of David's life, suggested that a trio of doctors — Raphael Wilson, Mary Ann South and Jack Montgomery — "encouraged" the Vetters to conceive another child in the weeks after losing their first son to SCID. The parents denied this.

Reasons for Optimism?
It would have been grotesque if the doctors had wanted the parents to conceive a child for a biological experiment, and bizarre to think that parents would willingly do so. However, the doctors would probably concede to having been optimistic in their assessment of the situation. After all, the Vetters had a 75 percent chance of having a healthy child. Another factor was the parents' faith; as devout Roman Catholics, they were prohibited from using birth control. To ask them not to risk conceiving another son would have required them to place quite difficult constraints on their marriage.

Impossible to Destroy Life
Once a child was conceived and confirmed to be male, the Vetters had the choice to terminate the pregnancy. However, as Catholics, this was not an option they considered. At that point, moreover, all the doctors could predict was that their son had a 50 percent chance of being born with SCID. If they aborted the pregnancy, they were just as likely to destroy the life of a perfectly healthy son as one with SCID.

Hope for a Good Outcome
In preparation for his birth, the Vetters could have had a normal delivery and hoped that their son would be born without SCID or, as the doctors suggested and as was actually carried out, have the delivery under sterile conditions and test the boy for SCID before exposing him to any germs. Dr. Wilson's direct experience in germ-free delivery involved three children: one was born without SCID, and the other two, a pair of twins, spent two years in isolator bubbles before spontaneously generating immune systems. If these two positive outcomes could not be achieved in this case, David already had a likely bone marrow donor in his older sister Katherine. Again, optimism seemed justified and certainly not false.

Failure to Imagine the Worst
In retrospect, the biggest ethical problem was the failure to plan for the worst-case scenario. Or rather, failing to imagine it. The original doctors considered the worst case to be a few years' wait before a cure could be found — not the absence of a cure. But as the years passed, the doctors took positions at other hospitals and universities. Mary Ann South: "My reasoning was ... the work is going to go on. I've done what I can do for David." Jack Montgomery: "I was not contributing in any way to a solution to David's problem. I was just keeping things going."

Support Through Research
Certainly being part of this historic experiment benefited the doctors' careers. Some 40-odd academic papers were written on David, most authored or co-authored by the original three doctors. But to suggest that the doctors used David to further their careers is simplistic. Recent interviews with the doctors make clear that they all cared personally and passionately about David. Moreover, the papers helped justify government and private grants that were used to pay for David's care, estimated to have been $1.3 million or more; the grants, and therefore the papers, kept David alive.

A Contribution to Medicine
At the time of David's death, one of David's doctors, William Shearer, told the press, "David's life was important, but his greatest contribution medically was his death, because with this information, we will be able to treat other children with this disease." Shearer was prescient, but his statement was easily misinterpreted by those who thought he was suggesting that David was more valuable dead than alive. The key modifier was "medically." Although David's life support system was revolutionary, new procedures were already superceding them, and no other children were likely to be raised in bubbles. David's autopsy and blood sample, however, helped researchers understand and repair the immune systems of other children with the same affliction.

Waiting for a Cure
As it turned out, an experimental treatment for the symptoms of SCID was first developed in 1990, when David would have been 18 years old, and an experimental cure through gene therapy was developed in 1993, when he would have been 21. Would spending an entire childhood in isolator bubbles have been a fair trade off against the life of a healthy adult?

Do No Harm?
Critics of the Texas Hospital team say that this was a situation that never should have happened. But at what point should the parents or doctors have prevented it? By never conceiving him? By aborting him? By allowing him a normal birth that would have killed him within a few months like his brother? Should they have removed him from his bubble earlier? Psychologist Mary Murphy remembers David suggesting that he should have been euthanized when he was a toddler: "When I was three, I wouldn't have cared." When he was nine his doctors suggested removing him from the bubble and treating him as best they could, with the strong likelihood that he would die. But how could a medical professional who had pledged "to do no harm" consider euthanizing an otherwise healthy and intelligent three — or nine — year old?

Ending vs. Never Beginning
Current bioethics makes an equivalence between ending extraordinary life-saving care and never beginning it. That is, removing David from the bubble later in life should be morally equivalent to never having put him in it in the first place. This equivalence is easier to accept in cases where the patient is comatose, like Terry Schiavo. Is the death of a seven-month-old like David's older brother really the same as the death of twelve-year-old David?

Making Decisions for Children
Perhaps the greatest breach in ethics in this case is in suggesting that David was merely a person to be acted upon and not an agent of his own future. But what is the appropriate age at which a person can make medical decisions for himself? Reverend Lawrence worried about David's human nature and the effects of his medical treatments on that essential humanity. "We think we know that human slavery is unacceptably dehumanizing," he wrote, "but how and on what basis do we decide if David's plastic prison was?" Perhaps this assumed lack of agency is comparable to slavery, but would Reverend Lawrence (or John Brown or Abraham Lincoln) have chosen to "free" slaves if that freedom assured their imminent death? Is a way of life — a way of living — ever more important than life itself? And who are we to say?

David's Point of View
Acquaintances reported that David questioned the value of his life, the meaning of it. No public records report that David was ever suicidal, however. In the end, the bubble was never a cage. The original doctors had agreed that they would stop treatment any time David and his family requested it. And David was an intelligent and resourceful boy who had access to tools that could have opened up the isolator. David always had the power to step out into the world whenever he wanted.

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