Review of "The Boy in the Bubble"
Dr. Lerner, MD, PhD, is Angelica Berrie-Arnold P. Gold Foundation Associate Professor at Columbia University, and the author of “The Breast Cancer Wars.”
After watching the latest American Experience documentary on PBS on Monday, April 10, 2006, you may never laugh again at the Seinfeld episode that spoofed the life of the “Bubble Boy.” After all, the real-life story of David Vetter asked the painful question: “Is this boy better off dead?” Not surprisingly, there were no easy answers.
Vetter was born in 1971 with Severe Combined Immune Deficiency (SCID), a disease of boys in which the body’s immune system cannot fight off infections. SCID was universally fatal, something the Vetters knew better than anyone else. Another son, also named David, had died from the disease.
When Carol Ann Vetter became pregnant with her second son shortly after her first son’s death, there was no doubt she would have the baby, even though there was a 50 percent chance he, too, had the faulty SCID gene. Vetter and her husband were strict Catholics and not interested in abortion.
But there was another factor at play: hope. Powerful hope, offered by Raphael Wilson, a Ph.D. immunologist at the University of Texas Medical Center in Dallas, who believed that the newborn child could be safely kept in a sterile plastic bubble until a curative bone marrow transplantation could be done. Wilson, who also happened to be a Catholic monk, baptized David shortly after his birth.
One of the great aspects of the documentary, entitled “The Boy in the Bubble,” is that almost all of the players from 30 years ago are interviewed. So here is Mary Ann South, another immunologist involved in David’s case, who explains Wilson’s appeal: “He just swept us along with his enthusiasm. He had the confidence to say ‘We can do this. We can do this.’”
But things did not turn out as Wilson had planned. At the beginning, there was optimism. As far as preventing infections goes, the bubble worked beautifully. David, shown in vivid archival footage, grew up as an adorable and precocious child. Special staff attended to his unique emotional needs, separated, as he was, from standard human contact.
The University of Texas Medical Center, already renowned for the work of its pioneering heart surgeon, Michael DeBakey, freely used David as a poster boy for its latest technological breakthrough. At one point, David’s doctors even got the National Aeronautics Space Agency (NASA) to design a special germ-free suit that allowed him to walk around inside and outside the medical center. Television cameras avidly followed the so-called “Miracle in Houston.”
But all was not well. First, David’s older sister, presumed to be the logical bone marrow donor, turned out to be a poor match. And David, as documented by formal psychological testing at age nine, was becoming increasingly depressed due to his bizarre and confining existence. A nurse quoted David in her notes: “1, 2, 3, 4, I can’t take this anymore!”
As the boy grew older, signs of psychosis began to emerge. In the documentary, Raymond Lawrence, a chaplain on the medical center staff in the 1970s, describes David as being “a rat in a cage.”
The choice of animal was not accidental. Lawrence was far from the first or last observer to suggest that David was less a patient than a subject in an experiment that had gone terribly awry. And one that had no logical conclusion.
One of the saddest moments in “The Boy in the Bubble” is its description of how David’s chief doctors, who had masterminded his treatment strategy, all gradually left the University of Texas. Their patient remained behind.
It was not until 1978, when William T. Shearer became David’s primary physician, that the reality of the situation was addressed. Shearer saw a boy undergoing dramatic psychiatric deterioration with no realistic hope of any new treatments on the horizon. He advised David’s parents that it was time to try the transplant, even though the odds of success were slim.
It took about three years to go ahead with this plan. “How do you kill a child?” asks Evelyn Nelson McMillan, a historian who has written on the Vetter case.
“The Boy in the Bubble” is another beautifully crafted American Experience documentary, mixing reenactments of events with comments by the actual participants in David’s life and by modern historians and ethicists. Given the media coverage of David’s case, it is not surprising that the filmmakers were able to obtain considerable video footage, which they use to excellent effect. Cartoon sequences of invading germs are a bit jarring at first, but do provide insight into David’s lifelong nightmares in which he became infected and died.
David lived for roughly four months after receiving his sister’s bone marrow on October 21, 1983. Due to his worsening medical condition, he left the bubble on February 7, 1984. David was twelve years old when he died in 1983. His body contained multiple cancers caused by a virus that had been inadvertently transmitted during the transplant.
One of the most poignant moments of the documentary comes when David’s mother describes how, at the very end of David’s life, she touched his hand for the first time without a layer of plastic separating them.
That Carol Vetter agreed to participate at all in this documentary is remarkable. She has not spoken publicly about her son in over 20 years.
When asked whether she would have made the same choices, in retrospect, she replies yes. She has, she said, no regrets and no blame.
Of course, Carol Vetter could not have answered any other way. It is thus left to the commentators to provide the final analysis. To Evelyn McMillan, the story of David Vetter demonstrates the medical hubris of doctors whose excitement about a new technology led them to recommend a misguided solution that lacked any exit strategy. To James H. Jones, a historian writing a book on the Vetter case, scientific curiosity needs to be tempered with “a very deep respect of our need to be human.” The doctors, the chaplain Raymond Lawrence concludes, offered too much hope.
Yet while the Vetter case is surely a cautionary tale, parents watching the story of his life will surely understand what was going through the heads of David’s parents and doctors back in 1971. As John R. Montgomery, a pediatrician and David’s primary doctor for his first years of his life, remarks, “If there is even a remote chance of success, for goodness sake, take it.”
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