It is one of Houston's signature stories: The cute little boy who lived nearly his whole life inside a series of sterile plastic bubbles, waiting for a cure for his fatal immune disease that, tragically, never came.
David Vetter - he was identified only as David at the time - was "the boy in the bubble," the Texas Medical Center's most famous patient from the early 1970s to the mid-1980s. As a captivated public watched, he grew up isolated from germs and human touch before dying, at age 12, after the failure of an experimental bone marrow transplant.
"David's life was a compelling human interest story that tugged at hearts year after year," said James Jones, a former University of Houston historian writing a book on the boy. "Over time, people around the world came to care deeply about his well-being, admiring his courage and pluck and hoping against hope science would find a cure for the mysterious disease that kept him incarcerated and denied a normal childhood."
He left a legacy of medical advances and vexing ethical questions.
It is little wonder, given the astonishing spectacle that was David's life. From infancy on, he could be touched only by neophene gloves sticking through the walls of his NASA-designed bubbles. Everything he touched had to be sterilized with peracetic acid and placed inside steel capsules inserted through a system of air locks. His mother was able to kiss him for the first time only when he came out of the bubble to die.
No child had ever been reared in such a cocoon. No child likely ever will again.
The cause of David's isolation was an inherited condition called severe combined immunodeficiency in which patients lack the white blood cells that fight infection, meaning any germ is a potential killer. It afflicts 40 to 80 babies every year in the United States and is fatal without treatment. In September 1971, when David was born, there was no treatment.
In effect, David became a living experiment. At the time, his story was depicted as one of technological triumph and valiant effort that gave his family and him 12 years together. Since then, many ethicists have argued it was hubris, a classic example of doctors promising more than medicine could deliver, creating an unacceptable quality of life that took a toll on his emotional well-being.
The medical legacy is less open to debate. David contributed enormously to a better understanding of clinical immunology, doctors say, an understanding that has resulted in better treatment for many diseases involving the immune system.
"His life, however short or restricted, helped scientists learn more about primary immunodeficiencies so that they could help other infants with SCID," Carol Ann Demaret, David's mother, wrote in a 2014 account of the ordeal. "That's given our family enormous comfort over the years and helped us manage our great sorrow."
The Vetters knew there was a good chance David would have the disease, which plagues only boys. Doctors told the couple there was a 50/50 chance any future son would have the condition after it claimed the Vetters' first son in infancy a year earlier. The Vetters, Catholics, opted to go ahead with the pregnancy, buoyed by hope their daughter's blood would match well enough for a bone marrow transplant, a newly developing technology.
David was delivered by cesarean section in a sterile operating room at Texas Children's Hospital, then whisked into his first sealed bubble, intended as a stopgap measure until either his immune system matured on its own or a transplant.
Dr. Mary Ann South, a pediatric immunologist and one of David's medical team, told the Chronicle in 2009 that "the Vetters were the only parents who asked if we could protect their boy. 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 his sister's blood didn't match, and David's immune system never kicked in. The wait for a cure dragged on for years, his protective bubbles growing in size along with him.
All the while, David's public persona charmed the public. He loved "Star Wars" films and the Houston Oilers. He was a straight-A student taught by telephone. He was well-behaved and handsome, with large, expressive eyes and a shock of dark hair. Behind the scenes, it was often a different story, the older David got. A psychologist who worked with him described the rage he sometimes exhibited at the terrible hand fate dealt him. At one point, he complained he "had been put into a cage and treated like a wild animal."
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. They could use his sister's blood.
The transplant seemed to work well initially. But in January 1984, David began showing signs of illness, a fever from what turned out to be an undetected Epstein-Barr virus in the donor marrow. Fifteen days after he was removed from the bubble for treatment, he died of a form of lymph cancer caused by the virus. It was the lead story on network news' outlets around the world.
A year later, Texas Children's chaplain criticized David's treatment in the Journal of the American Medical Association. He called the boy "the first true laboratory life ... a guinea pig (who) happened to be human." Many ethicists today share the view.
"David's poignant and tragic story is a reminder that doctors must not lose sight of the overall effects on the patient in the name of saving life," said Bruce Jennings, a senior adviser at the Hastings Center who writes frequently about end-of-life issues.
Still, there's no denying the advances that David's experience brought. Dr. William Shearer, a Baylor College of Medicine pediatric immunologist and David's doctor in later years, noted he provided one of the first proofs viruses can cause cancer and that his DNA helped identify the gene that causes immune deficiencies, leading to a test for his condition in newborns.
Today, bone marrow transplants, even imperfectly matched ones, work 90 percent of the time if performed within three months of birth.
If anything seems certain, it is that David will not be easily forgotten. He has been celebrated in movies, 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, shorthand for both the dangers of isolation and the thing some parents wish they could put their children in to keep them out of harm's way.
The best epitaph may be David's gravestone: "He never touched the world," it reads. "But the world was touched by him."
