Longform

Bursting the Bubble

As the "Bubble Boy," David Vetter was famous across the U.S. Newspapers, TV shows and magazines portrayed him as a happy, well-adjusted child who struggled cheerfully against the immune deficiency that condemned him to a life inside a plastic bubble.

But according to a person David called his best friend, the boy wasn't struggling cheerfully. In 1978, although he was not quite eight years old, David had realized his life would be lonely, dull and short. His helplessness enraged him. Before he was born, his body had been donated to science.

"Why am I so angry all the time?" he asked psychologist Mary Ada Murphy one summer evening. As he sat in his plastic isolation chamber on the third floor of Texas Children's Hospital, he could see Fannin Street from the room's window. But he couldn't touch that outside world, or participate in it.

"Whatever I do depends on what somebody else decides I do," he said. "Why school? Why did you make me learn to read? What good will it do? I won't ever be able to do anything anyway. So why? You tell me why."

"I can't say why," replied Murphy. Since David was three, she'd spent countless hours of her personal time with him.

David was angry, and he worried that he was going crazy. Murphy explained to him that anger was a natural reaction to his situation. As usual, she tried to help him cope with an unbearable situation -- a life much different than the one portrayed in the media.

Years later, Murphy said, David asked her to set the record straight, to write a realistic account of his life. In 1995, she planned to publish just such a book: Was It Worth It? The True Story of David the Bubble Boy. But shortly before her book was to be released, David's parents and Baylor College of Medicine officials sent strongly worded letters to the publishing company -- WRS, a small outfit in Waco -- withdrawing the written permission they'd given Murphy to write about David, questioning her facts and hinting at a lawsuit. WRS backed down, and the book never appeared.

As told by Murphy, David's story is not of triumph over adversity, but of the human cost of medicine's headlong rush toward the new. Even 13 years after his death -- when the ethical debate has moved on to cloning and genetic screening -- his story still serves as a cautionary tale.

And it continues to divide the opinions of people who cared for him. One member of the group that treated David asked not to be quoted by name for fear that Mary Murphy's enemies would retaliate. "It is important for you to understand that there is a powerful hierarchy at Texas Children's Hospital," said the former hospital employee. "And they are very angry at Mary. And they do not want to be reminded in any way, shape or form that this may have been a bad decision."

In 1970, Carol Ann and David Vetter Jr. had their first son -- also named David Joseph Vetter. Six months later, the baby died of Severe Combined Immune Deficiency Syndrome. He'd been born with a defect in his thymus, a ductless glandlike structure crucial to developing disease resistance. He was at the mercy of any passing germ.

A trio of doctors from Baylor College of Medicine told the Vetters that the defect might have been caused by a mutant gene. If so, the probability that another of their children would bear the disease was 10,000 to 1. But the doctors also explained that the defect might be carried on one of the mother's X chromosomes. If that was the case, and the Vetters had another son, the odds were 50-50 that he, too, would be afflicted by SCIDS.

The doctors -- John Montgomery, Mary Ann South and Raphael Wilson -- told the Vetters that should they choose to have another child, and should that child also have SCIDS, the newborn could be placed in an almost completely sterile isolator that would protect him from disease until a cure was found -- which, the doctors thought, was only a matter of time. The project would be financed with federal research grants.

The Vetters were predisposed to the doctors' plan: They were anxious to have another child, especially a son to carry on the family name. As Catholics, they may have been especially swayed by Dr. Wilson, a scientist who studied germ-free environments and was also a brother in the Order of the Holy Cross. In Europe, Wilson had been involved in a similar project: Two retarded twins had been successfully treated in sterile isolation. Remarkably, the twins' immune systems developed to the point that they could be removed from their isolators before they turned three.

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Steve McVicker