07:29 PM CST on Sunday, February 22, 2009 Associated Press HOUSTON —
A quarter century after a cute child known as “the boy in the bubble” died, he has left a legacy of remarkable medical advances as well as some lingering ethical questions.
David Phillip Vetter lived nearly his whole life inside a series of sterile plastic bubbles, waiting for a cure for his fatal immune disease. As a captivated public watched, he grew up isolated from both germs and human touch before dying, at age 12, after a then-experimental bone marrow transplant failed.
Sunday was the 25th anniversary of his death. “It’s such a great human interest story, how so many people came to care about him,” James Jones, a former University of Houston historian, told the Houston Chronicle for a story in Sunday editions.
“Most medical stories have a flash-in-the pan quality, but David’s story didn’t go away. For 12 years, thanks to news coverage around his birthday, he captured hearts worldwide.” The ethical questions involve David’s role as a sort of living experiment.
But some bioethicists argue it was a classic example of doctors promising more than medicine could deliver and creating an unacceptable quality of life that took a toll on his emotional well-being.
There’s less debate about David’s medical legacy.
Doctors say he contributed enormously to a better understanding of clinical immunology that has resulted in better treatment for many diseases.
Among the lessons doctors learned in David’s case were that viruses can cause cancer. He also was the source of DNA that helped identify the gene that causes immune deficiencies, a discovery that led to a test for the disease in newborns, when it is most effectively treated.
“A lot of kids are alive today because David was here,” his father David J. Vetter said last week in a rare interview. “Perhaps it was meant to be—that he was the little guy through whom doctors and the world were meant to learn about the immune system.”
Vetter said it was “kind of unbelievable it happened to us, plain, ordinary people.” Marveling at his family’s ability to cope, he said it was like “the whole world came crashing down” when David was diagnosed.
David had severe combined immunodeficiency, or SCID, an inherited condition in which someone lacks the white blood cells that fight infection. It afflicts 40 to 50 babies born every year in the United States and is fatal within a year or two without treatment.
In 1971, the year David was born, the only hope was a bone marrow transplant from a donor whose blood matched perfectly.
Because the Vetters knew there was a chance David would have the immune condition—their first son died of SCID in infancy—David was delivered by Cesarean section in a sterile operating room at Houston’s Texas Children’s Hospital.
Immediately, infant David was whisked into a sealed bubble intended as a stopgap measure until a match could be found—hopefully, his sister.
“The Vetters were the only parents who asked if we could protect their boy,” said Dr. Mary Ann South, a pediatric immunologist and one of David’s doctors. “We’d treated seven or eight children with the disease and all of them died. Nothing worked, and they never lived long enough for us to learn about the disease.”
But after his sister’s blood did not match, the wait for a match or any kind of cure dragged on.
The boy with large, dark eyes and a shock of dark hair loved Star Wars films and the Houston Oilers.
He longed to drink a Coke and walk barefoot on the grass. He was a straight-A student taught by telephone.
NASA designed a space suit so he could walk outside, but David didn’t take to it. In late 1983, as David began losing hope he would ever leave the bubble, doctors told the Vetters of a promising new bone marrow transplant technique using less-than-perfect matches.
The transplant seemed to work well initially. But in early 1984, David began showing signs of illness and soon was removed from the bubble for treatment.
When he died Feb. 22, 1984 of a form of lymph cancer caused by an undetected Epstein Barr virus in the transplant, it made headlines worldwide.
A recent study found that bone marrow transplants, even imperfectly matched ones, work 90 percent of the time if performed within three months of birth.
David’s life and legacy are remembered through dramatic works, music and sculpture.
“He never touched the world,” reads David’s epitaph on his gravestone. “But the world was touched by him.”