On February 22, 1984, Carol Ann Vetter touched her 12-year-old son's hand for the first time. David Vetter had spent his entire life inside a sterile isolator, with a protective layer of plastic shielding him from the world around him. Afflicted with a rare hereditary disease, severe combined immunodeficiency (SCID), David was defenseless against any germs. Now, his doctors were gambling on an experimental procedure to free him from his isolation -- but David would live only two weeks in the outside world before succumbing to infection.
In his own time, many regarded David's twelve-year odyssey inside his bubble as a triumph of technology. To others, it was a bizarre experiment that exemplified medical hubris. Since his death, David's name has receded; millions have come to know him simply as "the boy in the bubble," popularized by Paul Simon's hit song, a feature film, and television's "Seinfeld."
American Experience presents The Boy in the Bubble, a story of medical perseverance and personal tragedy produced and directed by Barak Goodman and John Maggio (Kinsey). With first-hand recollections from David's mother and the doctors, nurses, therapists, and the chaplain who cared for him, as well those who were critical of the handling of his case, this one-hour film documents the life of a little boy who became a living experiment in a fight to cure a rare disease.
Moments after David's birth, doctors at Texas Children's Hospital in Houston placed the tiny infant in a sterile plastic enclosure until he could be tested for SCID. Dr. Rafael Wilson, an immunologist, led David's care. If the boy tested positive, Wilson planned to strengthen his immune system with a bone marrow transplant from David's sister. But after the diagnosis had been confirmed, Wilson determined that David's sister was not a viable donor. Suddenly, the isolation that was intended to be a stopgap measure became the only treatment for David's illness; his plastic bubble was now his permanent home.
The unanticipated turn of events created a medical conundrum: on the one hand, no child had ever been intentionally reared from birth in isolation and the effects of such confinement could not be known. On the other hand, removing David from his bubble would kill him, and while he was alive he provided a unique opportunity for Wilson and others to learn more about his disease. Thanks primarily to Wilson's efforts, immunologists learned how SCID suppresses the immune system, hematologists learned about the properties of germ-free blood, and psychologists learned about the human response to physical isolation. "David was a research subject as well as a patient, and those two roles became blurred," says independent scholar James Jones, author of a forthcoming book on the subject. "Here is a child who over time has so many punctures that his feet start to look like pin cushions."
None of the research, however, yielded a cure for David. As month turned into years, David's physical development remained on track, but his concept of the world became more and more distorted. "There were so many things he couldn't understand, like wind," explains Mary Murphy, a child psychologist who worked with David for seven years. "He saw the world as flat. There was nothing behind anything."
When David was five, NASA designed a child-sized space suit, which briefly allowed him to explore the world outside of the hospital. But after just six excursions, the suit was retired. David was terrified, afraid the germs that lived in the outside world would gain entrance through the suit and destroy him.
Murphy encouraged David to escape his bubble through his imagination. But David couldn't escape the vivid nightmares that pitted him against "The King of Germs"--the one enemy he knew he could not defeat.
Beginning in 1978, when David was 7, he began to suffer bouts of anxiety and depression at his confinement. Though he tried mightily to face his strange situation with courage and cheerfulness, his despair increasingly showed through. "He can't say why he is unhappy but that he definitely is," wrote one nurse at the time. "He said he's been 'unhappy' for several years now but cannot and will not tell anyone why." In 1981, David was discharged to his parents' full-time care. But even in a bubble at his parents' house, his growing understanding of his predicament preyed on his mind.
"David would spend a lot of time gazing outside, and he would see young boys on bicycles or he would see kids rumbling in the grass. I sensed a sadness to him. The time was coming soon where something would have to be done," recalls his mother.
Then, researchers at Boston's Dana-Farber Institute announced that they had developed a way to safely transplant incompatible bone marrow. The procedure had been tried on only a few patients, but it provided the first glimmer of hope in twelve years of searching for a cure for SCID. With David failing, his doctors and family, in consultation with David himself, leapt at the chance to perform the experimental procedure. On October 21, 1983, doctors infused David with two ounces of his sister's bone marrow, hoping this would provide him with the ability to make antibodies on his own and free him from the bubble.
But Katherine's bone marrow, doctors later learned, contained traces of a dormant virus. Once inside David's defenseless body, the virus spread rapidly, producing hundreds of cancerous tumors. David left his bubble on February 7, 1984, and died fifteen days later.
"David's short life raised profound questions about when and how medical technology should be brought to bear against disease," says filmmaker Barak Goodman. "In our rush to prolong life, are we creating states so unnatural that they beg the question of what it means to be human? In David's case, there were no easy answers and this is precisely what drew me, and I think will draw viewers, to his story."