The Life And Death Of David Vetter, The Boy Who Lived His Whole Life In A Bubble

But what was his story? Why did he live – and die – the way he did? And does anybody live like that today?

From birth to bubble

Vetter, whose surname was withheld from the public until a decade after his death, was born in September 1971 – and immediately began a life like nobody else’s. 

He was born via caesarian section – but not for any emergent reason, like most of those procedures. Instead, it was planned well in advance, as a safety measure for David’s health: during a normal birth, babies pick up germs and bacteria from their mothers’ bodies on the way out – that’s not a bug, but a feature, setting up the infants’ immune and digestive systems ready for life outside the sterile safety of the womb – but for David, such an exposure could have been an immediate death sentence. He, therefore, exited via the sunroof.

Even for a surgery, though, the procedure was unusually sterile and precise. The delivery rooms were decontaminated of all germs: “The rooms were sealed off, all non-essential equipment was removed, and the cabinets taped shut,” notes PBS’s American Experience. “Each room was scrubbed down daily, from floor to ceiling, for three days. The afternoon before the surgery, foot traffic was directed away from the hallways outside the rooms.”

Every member of the delivery team had been tested for pathogens before the big day, and the team had developed a barely perceptible system of nods and winks to communicate through the otherwise silent procedure. David’s mother, Carol Ann, had been scrubbed down with surgical disinfectant, and wrapped in sterile sheets. For 15 minutes, in between the section being ready and commencing, nobody in the room spoke or moved, to allow the air to settle before they started.

After all that buildup, the birth itself must have been something of an anticlimax. There were, the surgeon responsible estimated, no more than five seconds between David leaving his mother’s womb and entering a sterile “bubble” equipped with disinfected diapers, bottles, medical equipment, and even sterilized holy water for a quick baptism.

The next time he would leave his bubble would be 12 years later. Two weeks after that, he was dead.

So what happened?

A devastating diagnosis

David Vetter was not his parents’ first son.

Well, actually, that’s not true. David Phillip Vetter was not the first son born to Carol Ann and David Joseph Vetter Jr – but David Joseph Vetter III, who was born just a year earlier, was.

Unfortunately, David Joseph was born with a terrible illness: severe combined immunodeficiency, or SCID. It was – and is – an almost vanishingly rare condition, occurring in only one or two babies per 100,000, and it can basically be thought of as being born without an immune system. 

What that means is that just about anything, from a common cold to a yeast infection to just eating the wrong thing, could result in death for these babies – and indeed, almost all children born with SCID at that time would die before they reached two years old. David Joseph was no exception: he died at just seven months old, and his parents were told that any male child they conceived in future would have a 50/50 chance of being born with the same disease.

By that point, though, they were already expecting his brother.

“The decision to have another child came from our hearts and our minds,” Carol Ann wrote in an article for People magazine in 1984. “We were not trying to fill a void, to replace the son we had just lost. We decided to place our trust in God.” 

“No matter what happened, to us a therapeutic abortion would have been out of the question,” she declared.

But soon after their second son was born, the worst was confirmed: David Phillip had also been born with SCID. The bubble and hyper-clean environment he had been born into would have to become his home – at least until a cure or treatment could be found.

Life in the bubble

It was meant to be a short-term thing. David’s immunologist, an ambitious doctor named Raphael Wilson, had a bold idea for treatment: a bone marrow transplant, which could replace David’s faulty stem cells with healthy ones from a donor.

But it was a long shot. A long shot. Despite Wilson’s confidence, this was a treatment that had never been performed before – and a successful transplant would require a perfect match. Parents would only be a half-match, so they were out; a sibling would have a one-in-four shot of qualifying, but when his sister was tested, she too was ruled out as a donor. The odds of finding a match from outside of the family, meanwhile, were in the hundreds of thousands to one.

As each avenue closed off, David’s bubble became more and more permanent. Buoyed by an optimism in the rapidly evolving medical landscape, his doctors kept him on as both a patient and a research subject: “Lots of us that were involved with David’s care really assumed that big breakthroughs were possible in terms of immune deficiency,” recalled Jacqueline Vogel, a psychologist and therapist who worked with David, in 2006.

But time marched on. One year became two, and then three, and before long David was a walking, talking toddler – and defying expectations each day. Despite “growing up in a plastic bubble like this, literally untouched by human hands,” his behavior was “normal or […] really precocious,” David Freedman, then a professor of psychiatry at Baylor College of Medicine, told the New York Times  in 1974. 

He was strong – he learned to crawl by six months old, and was walking at eight. He showed high intelligence, with smarts judged by his doctors to be two years ahead of his peers. But in other areas, he struggled: he was slow to learn communication skills, both verbal and non-verbal, possibly just because he was surrounded so often by a changing group of doctors who never spoke to him directly. His visual and spatial perception skills were radically held back: “He saw the world as flat,” explained Mary Ada Murphy, a child psychologist who worked with David from when he was five. “There was nothing behind anything.”

“I said something about leaves and he said, ‘Well trees didn’t have leaves; they were a brown rectangle and a green oval’,” she recalled. “So I went out and tore a branch off the tree to show him and he just got so excited about that. And he just couldn’t believe it.”

“There were so many things he couldn’t understand,” Murphy added. “Like wind – he absolutely could not understand it.”

Escape

As David grew older, life in the bubble started to wear thin. Attempts to connect him more with the outside world – like moving him into a sterile area within his family home, or a NASA-designed “space suit” that let him roam the streets and explore his parents’ back yard for the first time – just served to highlight his separation from it.

He became withdrawn; he suffered from low moods and nightmares. “It was the mental anguish of knowing that tomorrow is just going to be like today, only worse,” Murphy said. “He would tell me what his nightmares were […] The ‘King of Germs’ – that was a recurring one. The King of Germs was going to get him.”

“He had no choices, and his hormones were kicking in and he felt that everybody was deserting him,” she said. “[And] they pretty much were.”

And then, something incredible happened. In 1983, researchers announced that they had developed a way to transplant bone marrow even without a perfect match – just a half-match could be enough. With his sister as a donor, the breakthrough that could let David leave his bubble had finally arrived.

“The tone was very optimistic,” recalled John Montgomery, one of David’s immunologists. “Everything seem[ed] to be going well.” 

“You know, you sort of went around with your fingers crossed saying, ‘No news is good news,’” he said. “And then came the bad news.”

Transmitted inside his sister’s lifesaving bone marrow, there had been an uninvited guest: traces of Epstein Barr, one of the most common viruses in humans. It was small enough to be undetectable by the technology of the time – but for David’s body, bereft of any defenses against it, it was devastating. 

Without the protection of an immune system, the otherwise everyday virus had run rampant through David’s body, producing hundreds of cancerous tumors. Weeks after the transplant, he spiked a temperature; within days of that, he was hemorrhaging from his intestines and vomiting blood. 

After 12 years, he was finally going to leave the bubble – not because he was healthy, but because he needed emergency medical help.

“I looked over to the side of David’s room, and there was a physician standing. And I asked him if I could remove my glove and touch David, and he nodded yes,” Carol Ann recalled. “So I walked over to David, and I took my glove off of my hand, and I stroked the back of his hand, for the first and last time.”

By 8:00 pm that day, he was dead.

Once, and never again

David’s story was a tragedy – and a triumph. Thanks to his life as a human guinea pig, the world was bequeathed dozens of medical breakthroughs: the confirmation that a virus could cause cancer was a major one; so too was the mapping of the genetic origin of his disease, which directly led to new therapies for children born with SCID.

Today, there are treatments – even cures – for SCID. Babies are screened at birth, and those found to carry the disease can be given stem cell therapies that can, if administered early enough, all but guarantee their survival.

Then and now, some have argued that offering David’s life as price for these advancements was a choice too far from his parents and doctors. Technically, his bubble was never a prison; he could have left at any time. But he knew, in a way few children do, that to do so would likely mean his death – and so he spent his days alone, separated physically from even those who loved him the most, waiting for a medical procedure he had no guarantee would ever arrive.

Was it worth it? The question, really, is moot: he did live in that bubble, and now nobody else will have to.

As the eulogy at his funeral summed up: “To those who measure life by production, this life was a total and complete waste. But to those who measure life by giving and receiving, David’s life was one of the fullest […] ever known.”