The Boy in the Bubble

To anyone younger than 30, David Phillip Vetter is more an idea than a person. He is a phrase in a Paul Simon song, a character in a Seinfeld episode, the subject of a PBS documentary, and the inspiration for movies starring Jake Gyllenhaal and a very young John Travolta. But before all of those pieces of art and culture, there was David Vetter, the boy who inspired them — the 'Boy in the Bubble' who died Feb. 22, 1984.

David was 12 when he died, and he was famous: He had spent all of his life, from seconds after his birth to a few weeks before his death, in a sterile enclosure that protected him from germs but separated him from human contact. He was born with severe combined immunodeficiency, a genetic disorder that left him essentially without an immune system and guaranteed that what would be a minor infection for any other child would be a death sentence for him. His parents, David Joseph Vetter Jr. and Carol Ann Vetter, had already lost their second baby, David Joseph Vetter III, to the disease, which affects only boys. When they learned their next child would be a boy, physicians at Texas Children’s Hospital in Houston offered the opportunity to protect the boy in a "bubble" until a bone-marrow transplant could be achieved. The Vetters leaped at the chance.

Doctors and parents assumed David would be in the enclosure for weeks or months at most, until marrow from his sister Katherine restored his immune defenses. But Katherine, three years older, turned out to not be an immunologic match. A transplant with her marrow would not succeed, and no other donor could be found. David remained in the hospital enclosure, or in a smaller version at his parents' house, attending school through a sterilized speakerphone and taking walks in a "spacesuit" designed for him by NASA. No one else ever entered the bubble; family and health care workers could see David and speak to him, but they could touch him only with heavy rubber gloves sealed into the enclosure's walls.

Eventually, the doctors who had devised the bubble left Texas Children's and new physicians took over his care. Advances in immunology — along with David's growing frustration and depression — convinced them to try the transplant the hospital had ruled out 12 years earlier.

It did not take. Worse, Katherine's marrow contained an undetected virus that triggered a fast-growing cancer. David still had no immune system that could hold the disease in check. Fifteen days after leaving the bubble, he died.

A quarter-century later, the science of immunology has moved on. The disease that caused David to be confined — SCID, for short — is now understood to be a cluster of genetic disorders that are collectively called "primary immunodeficiency diseases." They remain fatal, but only if they go undiagnosed. If children are identified and receive a transplant in their first few months, they have a 90 percent chance of living a normal life. Recently, Italian researchers reported in the New England Journal of Medicine that gene therapy appears to have cured eight of 10 children with SCID they tested and monitored. Whatever course of treatment is pursued, children no longer have to live in bubbles.

"To my knowledge they are no longer in use," said Dr. Jack Routes, the chief of allergy and immunology at the Children's Hospital of Wisconsin, who runs the only newborn screening program for SCID in the United States. "If we identify a SCID baby, we put them on prophylactic antibiotics, gammaglobulin and send them home until we find a match for a bone marrow transplant, because that is a safer environment than the hospital. There are many, many things we can do that they couldn't do back then."

But SCID and related disorders are rare, occurring in one out of every 50,000 to 100,000 births. Many people will never meet a SCID child — so physicians who treat them are grateful for David's memory, because his story makes the disorder so heartbreakingly real. "He brought recognition of this disease to the people in the streets," said Dr. Maite de la Morena, an immunologist at Children's Medical Center in Dallas and associate professor at University of Texas Southwestern Medical Center.

To much of the rest of medicine, though, the "boy in the bubble" is a cautionary tale, in which hubris and desperate hope combined to obscure the needs of a lonely, unimaginably isolated child.

"It is very easy to believe that a cure is around the corner," said Dr. Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital. "And there is always a very strong desire to do something, especially when a case is dire."

Among the many lessons of David's life, Wilfond said, is a reminder to ask questions that medicine never wants to contemplate: What is the worst that could happen? What if this doesn't work?

To those who know the story, it is stunning how David's image has persisted, even among people who have never known his name.

"It's been so many years, and yet you still hear people refer to the 'boy in the bubble,'" said Elizabeth DeVita-Raeburn, a journalist whose older brother Ted was confined in a sterile enclosure at the National Institutes of Health when he developed aplastic anemia at age 9, a few months after David entered his own bubble. Ted DeVita lived to 17; his life story was conflated with David's in the 1976 made-for-TV movie "The Boy in the Plastic Bubble," starring John Travolta in one of his earliest film roles.

"I ask people sometimes why they are so fascinated with the idea," she said. "There is something about it that tugs at them. One person said to me that it was because they could never be touched."

Written by Maryn McKenna. Originally published February 2009.