“IT WAS THE LONGEST 15 MINUTES OF MY LIFE…” Four decades after giving birth, Carol Ann Vetter reflects on the moments she lay on the operating table just before her son’s scheduled delivery by C-section. “I was wheeled into the delivery room. Everything was quiet; there was no conversation. All I could see were eyes peering at me from behind surgical masks. The isolator was placed to my left, just a few inches away. I knew the time had come.” While she anticipated that the baby’s birth would be monumental, nothing could have prepared her for how much his arrival would affect her family—and ultimately, the world. On September 21, 1971, Carol Ann delivered a baby boy at the Texas Medical Center in Houston. The circumstances were unusual. Several days before the event, three interconnected operating rooms had been sealed off, their cabinets taped shut and all non-essential equipment removed. They were then scrubbed down and sterilized from top to bottom on three successive days; all foot traffic in the hospital was diverted elsewhere. The team of doctors swirling around Carol Ann nodded and used eye signals so that no extraneous movements would disturb the air in the room. Showered, shampooed and scrubbed down with a bacterial disinfectant, the expectant mother was prepped for surgery on sterilized sheets and dressed in a sterile mask and gown; had consumed only sterilized food for the last few days.
David Phillip Vetter entered the world screaming, appearing as healthy as any other squalling newborn. But Carol Ann wasn’t allowed to hold him. Less than 20 seconds after emerging from the womb, he was placed inside a protective plastic “bubble.” Little did his mother know that he would remain there for the rest of his life. The infant was then whisked away for clinical tests. David’s parents awaited the results with bated breath. It didn’t take long until they received the news they had been dreading. This baby had the same condition that had killed his older brother the year before—severe combined immunodeficiency disorder (SCID). This rare genetic disease, which affects one in 50,000 to 100,000 babies, leaves them without an immune system, defenseless against germs. As there was no cure, David Phillip would ultimately succumb to the same fate. But not if Carol Ann’s medical team had anything to say about it. It was the early 1970s, a time when many important scientific advances were being made. The city of Houston was at the forefront of cutting-edge medical technology; America’s first successful heart transplant had recently been performed there. Incurable? No such thing! SCID was a formidable challenge, but David Phillip’s doctors were up to the task. Or so they thought. David Joseph Vetter, the Vetters’ second child, born a few years after a healthy baby girl named Katherine, had died in August 1970 after a short battle with SCID.
He had been scheduled to receive a bone marrow transplant from his sister, who was a perfect match, but as was often the case with SCID babies, infection took his life before the transplant was performed. It was the only treatment available at the time. Carol Ann found out she was expecting only eight weeks after burying her son. The doctors explained to her and her husband that in the event this next child was a boy, he had a 50 percent chance of being born with SCID, just like his older brother. This time, though, an experimental biologist at the hospital had an idea: By keeping the newborn isolated from germs from the moment of birth in a sterile plastic “bubble,” doctors would be able to transplant his sister’s bone marrow before he could be exposed to infection. It had worked in trials with laboratory mice, the researcher reported optimistically. Why not on the Vetters’ child? After giving it some thought, Carol Ann and her husband agreed to this out-of-the-box plan. For the next seven months they prayed that their baby would be born healthy and that it wouldn’t be necessary. When the news came that their worst nightmare had materialized, they were devastated. “We were absolutely heartsick,” Carol Ann says, recalling her intense grief upon hearing the diagnosis. A bone marrow transplant was their only hope. Peering at the newborn safely ensconced in his plastic prison, Carol Ann was wary of getting attached to him only to lose him. If only I can stay emotionally distant, she thought to herself, I could handle it better if the worst happened. For that reason, she hesitated to put her hands inside the thick black gloves attached at intervals to the sides of the bubble so that she could “touch” him.
Of course, once she did, “I was hooked for life.” There was, however, a weak link in the doctors’ plan. Because Katherine’s bone marrow had been a perfect match for one brother, they were taking it for granted that she would be a perfect match for this sibling as well. It was a critical mistake. In truth, the Vetters were up against difficult odds. The chances of finding a perfect sibling match are one in four; with someone who is not blood-related, the odds are one in hundreds of thousands. To their disappointment, the couple soon learned that David Phillip and his sister were not a perfect match. The Vetters were told that their baby would have to stay in a germ-free environment either until a perfect match was found or until science found a cure for SCID, whichever came first. For all intents and purposes, rather than a stopgap measure, the plastic bubble was now David’s permanent home. The bubble was pumped with a constant flow of filtered air as David’s caretakers changed his diapers, rocked, fed and held him with the unwieldy gloves. His parents could not tousle his hair without wearing those gloves or kiss his cheeks without a plastic barrier between them. Everything the baby ate, wore or touched had to be sterilized. As one can imagine, daily life was challenging. The small buttons on the baby’s clothing were sometimes so hard to manipulate that Carol Ann resorted to using the adhesive tabs from a disposable diaper to keep his shirt closed. Feedings were complicated too. Nurses spoonfed David until he was well past two years old so the toddler wouldn’t make too much of a mess inside the bubble. As everything had to be sterilized, he ate only canned or jarred offerings with the labels removed to avoid germs. A clever boy, David eventually learned to distinguish which cans held his favorites—spaghetti and lasagna—by weight. He was tutored and played with toys from inside the bubble’s protective walls. For his birthday, Carol Ann would lovingly bake him a cake, and he would watch from inside the isolator as his family blew out the candles on his behalf. In fact, he celebrated many birthdays this way, never knowing how many more he would mark inside his plastic prison.
Not sure how long David could live like this, researchers threw themselves into the task of finding a way to perform a bone marrow transplant using a donor who was not a perfect match. They also studied the psychological effects of living in isolation as David’s situation was unprecedented in history. In the meantime, David, whose last name was kept anonymous to preserve the family’s privacy, had become famous as the “bubble boy,” a media darling whose survival represented one of America’s greatest technological advancements. But as time passed with no salvation on the horizon, doctors debated the ethical problem of keeping him confined indefinitely. When David was three, a sterile chamber was built in his parents’ house in Conroe, Texas, along with a sterile transport chamber, so that he could spend periods of two to three weeks at home. It was reported that the little boy’s mood lightened considerably once he was outside the hospital. For the first time he could enjoy the company of other children. It was a great improvement, but his parents noted that he would sometimes gaze out the window at his neighbors riding bicycles and playing in the grass. Still, his mother says that throughout his ordeal, “he never felt handicapped or cheated, and never said, ‘Why me?’” In 1977, NASA developed a special $50,000 space suit to improve David’s quality of life, allowing him to venture beyond the four walls of his room. He was afraid to get into it, and after only six outings, David refused ever to use the space suit again. Then in 1983, after more than a decade of waiting, news came out of Boston that offered the family hope. An experimental procedure had been developed for transplanting bone marrow from donors who were not a perfect match. The doctors hoped that Katherine’s bone marrow would kick-start David’s immune system and that it would begin to work on its own. David, understandably, was eager to give it a shot. And so, in October 1984, Katherine’s bone marrow was extracted and treated in a Boston hospital, after which it was flown down to Houston and transfused into David’s body.
As the precious two ounces of potentially life-giving liquid entered his veins, “we fantasized about how it was all behind us and how exuberant we were going to be to touch David for the first time,” Carol Ann recalls. The doctors were also optimistic, but a short time later David developed a fever. In the days that followed his temperature soared to 105 degrees. His intestines began to hemorrhage and he vomited blood. Eventually the doctors had to admit defeat. There was nothing they could do. On February 7, 1984, David left his protective bubble for the first time in his life. Sadly, it was not the joyous occasion his family had looked forward to for over a decade. David was wheeled to a sterile room for medical care that no one wanted to admit was probably futile. His condition continued to deteriorate, until he finally lapsed into a coma. On February 22, 1984, David’s mother and father entered his room. “I asked the doctor if I could touch him. He nodded. I walked over, took my glove off and stroked the back of his hand for the first and last time.” Then Carol Ann removed her mask and kissed her 12-year-old son. A few minutes later, David succumbed to the disease he had been battling since the day he was born. As tragic as it was to lose him, Carol Ann has told media outlets that she is comforted by the great contributions to medicine that David made even in death. His autopsy showed that Katherine’s bone marrow had contained dormant traces of the Epstein-Barr virus, which had spread rapidly in David’s defenseless body, producing hundreds of tumors. It was the first direct proof that a virus can cause cancer. While the doctors who treated David Vetter might not have been able to save him, there were many positive outcomes.
Indeed, the knowledge they gained is still being used to develop successful treatments for children with compromised immune systems. One baby who benefited is Evangelina Padilla-Vaccaro, who was born with SCID in 2012. It was mother’s intuition that warned Alysia Padilla-Vaccaro that something was wrong with one of her newborn twins. “I was told that it was the stress or fear of being a new mother, but I knew that something wasn’t right,” the California mom told media outlets. Thankfully, she persisted, insisting that the baby be tested. She and her husband were shocked to discover that little Evangelina had SCID. Even a small cold or infection, the doctors explained to her stunned parents, could kill her. Evangelina had to be kept in isolation at home; only immediate family could come into contact with her, and they had to shower before exposure and wear a mask and gown. “It was the worst time of my life,” Alysia said. Alysia and her husband took Evangelina to UCLA, where she would ultimately be given a new lease on life as part of a groundbreaking trial of an experimental therapy for children with a particular type of SCID—adenosine deaminase deficient SCID, the type she had. Led by Dr. Donald Kohn, researchers tested two therapeutic regimens on 18 children, removing the blood stem cells from their bone marrow and modifying them genetically to correct the defect causing their illness. The results? All 18 patients were cured. The elated parents of the now two-yearold Evangelina, who is free to explore the world around her, have stated that her recovery is nothing short of a miracle. Only a few months after her arrival at UCLA, her parents were able to remove their masks. They could hug and kiss their daughter and take her outside. “To finally kiss your child, to hold her— it’s impossible to describe what a gift that is,” Alysia told reporters. “I gave birth to my daughter, but Dr. Kohn gave my baby life.” Dr. Kohn and the rest of the team credit their breakthrough—three decades in the making—to the original “bubble boy,” David Vetter. All of which is very gratifying to Carol Ann Vetter. “I don’t have any regrets, and I don’t have blame,” she has been quoted as saying. “Any parent who has lost a child wonders if his brief life meant something to the world. And science has told me that it did.”