Boy in bubble’ story not forgotten 25 years after death

By TODD ACKERMAN Copyright 2009 Houston Chronicle

Feb. 21, 2009, 9:07PM

It was a story that touched the world, the cute little boy who lived virtually his whole life inside a series of sterile plastic bubbles, waiting for a cure for his fatal immune disease that, tragically, never came.

Known as “the boy in the bubble,” or just David, he was the Texas Medical Center’s most famous patient from the early ’70s to the mid-’80s. As a captivated public watched, he grew up isolated from both germs and human touch before finally dying, at age 12, after the failure of a then experimental bone-marrow transplant.

The case was truly unique: Never again would a child live a life in such a cocoon. “It’s such a great human interest story, how so many people came to care about him,” says James Jones, a former University of Houston historian and author of a forthcoming book on the subject. “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.”

Today, 25 years to the day since his death, David Phillip Vetter remains one of Houston’s signature stories, his mark still felt in a legacy of vexing ethical questions and medical advances.

The ethical questions involve David’s role as a sort of living experiment. While keeping him alive was largely seen as a technological triumph and a valiant effort that gave him and his family 12 years together, some bioethicists argue it was a classic example of doctors promising more than medicine could deliver and creating an unacceptable quality of life. That quality took a toll on David’s emotional well-being.

David’s medical legacy is less open to debate. Doctors say he contributed enormously to a better understanding of clinical immunology, an understanding that has resulted in better treatment for many diseases involving the immune system.

At a time when HIV/AIDS was coming onto the scene, David also put diseases of the immune system on people’s radar screen.

“A lot of kids are alive today because David was here,” David J. Vetter said last week in a rare interview about his son. “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 (SCID), an inherited condition in which the patient 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. The Vetters hoped their daughter would provide the match.

Sibling died in infancy

Because the Vetters knew there was a chance David would have the immune condition — a first son had died of SCID in infancy — he was delivered by cesarean section in a sterile operating room at Texas Children’s Hospital. Immediately, he was whisked into a sealed bubble intended as a stopgap measure until a match could be found.

“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 team of 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 David’s sister’s blood didn’t 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.

The protective bubbles at the hospital and his parents’ home became larger and larger as he grew. Their walls were fitted with heavy-duty rubber gloves through which doctors cared for him; food was sterilized and slipped in through air locks. NASA designed a spacesuit to give him freedom to 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 January 1984, David began showing signs of illness and soon was removed from the bubble for treatment. When he died 15 days later of a form of lymph cancer caused by an undetected Epstein Barr virus in the transplant, it made headlines around the world.

“People often ask what’s the measure of someone’s life, but very few people stood as tall as David,” said Dr. William Shearer, a Baylor College of Medicine pediatric immunologist and David’s doctor in later years. “More than any scientist, he taught us by his life.”

Among the lessons were one of the first proofs 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.

Debate continues

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.

Still, the debate about the ethics of David’s treatment continues. Bruce Jennings, director of the Center for Humans and Nature, said it shows the need to be careful about the faith placed in technology and the temptation to treat children as guinea pigs. But University of Texas Medical Branch at Galveston ethicist William Winslade said harsh criticism isn’t appropriate “at a time when people were doing everything they could to save lives.”

If anything seems certain, it is that David will not easily be forgotten. He has been celebrated in dramatic works, music and sculpture.

A center at Texas Children’s and a school and street in The Woodlands bear his name. And as historian Jones notes, the term bubble has become an enduring part of the language, a parent’s shorthand for the thing they wish they could put their children in to keep them out of harm’s way.

Still, David’s best epitaph may be the one on his gravestone in Conroe.

“He never touched the world,” says the epitaph. “But the world was touched by him.”

todd.ackerman@chron.com

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