Narrator: After his recovery, Wilson informed David that he too would be leaving Houston. But early this morning, doctors operated on David. : Here he was, inside of this system. John Toffolo "David's short life raised profound questions about when and how medical technology should be brought to bear against disease," says filmmaker Barak Goodman. Carol Ann Vetter Demaret: David was in awe of everything around him, he was looking right and left all the time. Liz Seru At the time of his birth in 1971, a bone marrow transplant from an exact matched donor was the only cure for SCID, but there was no match available in David’s family. I said, "Yeah, I know somebody made a hole. John R. Montgomery, M.D. Finally, he lapsed into a coma. Raymond Lawrence, hospital chaplain It was just impossible. Documentary | Episode aired 11 September 2006 Previous All Episodes (31) Next Add a Plot » Added to Watchlist. Evelyn Nelson McMillan: They were totally unwilling to look ahead. What was done to protect David from infection? Barak Goodman's moving documentary tells the story of David's life and considers the ethical issues behind what became a living experiment in the fight to cure a rare disease. The ever-smiling effervescent youngster took his first walk in the outside world as he watered the yard and played with the family dog. Narrator: As Murphy spent more time with David, she began to discover new ways in which his confinement was affecting him. And probably he'll match Katherine like his brother did and we'll give him the transplant and, uh, he'll be well. Texas Medical Center, home to Texas Children's, was the epicenter of medical innovation in the United States, from the separation of conjoined twins to major advances in heart transplant surgery. James H. Jones, Ph.D.: They pretended that they were on space odysseys, -- places that transcended his isolator. By the early 1970s, American medicine itself had undergone a significant cultural shift. | Yes, a bubble boy! What was the disease called that David had?_____ 3. Michael Krantz Evelyn Nelson McMillan: The bubble was successful for David. The featured speaker was Raphael Wilson, himself. Greg Andracke She is a daughter of the Speaker of the United States House of … He was a beautiful baby. His muscular development is normal. Belmont Medical Supply Company Scottish Rite Cathedral When he was about 21 months old, he was playing with this little red wagon and he was turning the wheels and he says, "What is that in there?" David's life contributed to scientific understandings and treatments of severe combined immunodeficiency (SCID), the disease that kept him in the bubble. But once I did, I was hooked for life. | He lives in a bubble! From a few seconds after his birth until two weeks before his death at age 12, David Phillip Vetter lived life entirely in plastic bubbles. Why do we have to worry about something that maybe years down the road, that may never occur, and that probably, if you look at what we have done over the past two or three years of taking care of David, when the problem comes up, we'll solve it? (Enter your ZIP code for information on American Experience events and screening in your area.). That's how science explained it to us. Yet some continued to question whether David himself had borne too high a price for the advancement of medicine. They were happy with the present, with how well things were going. In the spring of 1981, when David was nine, Shearer decided to discharge him to his parents' full-time care. Nicknamed "Bubble Boy," David was born in 1971 with severe combined immunodeficiency (SCID), and … And in that climate it was natural for physicians and researchers to want to take up any condition which was incurable and treat it as a challenge -- treat it as an enemy to be defeated. National Museum of American History Town of Arlington, MA Carol Ann Vetter Demaret James H. Jones, Ph.D.: The procedure is experimental; it has not been proven to be efficacious, but after nothing on the radar screen, this is the first bleep of hope. John R. Montgomery, M.D. Once inside David's defenseless body, the virus had spread rapidly, producing hundreds of cancerous tumors. We were so heartsick. Jacqueline B. Vogel: I think he became more introspective, quieter. Evelyn Nelson McMillan, Writer: The doctors knew that the odds of finding a perfect sibling match were one in four. The close genetic match between siblings meant that Katherine was David's best hope for a cure at the beginning and at the end of his life. Narrator: The delivering team planned to place the newborn immediately into a sterile plastic enclosure, called an "isolator.". With Ron Paul, Jim Rogers, Marc Faber, Doug Casey. Corinne Duggan In 1974 doctors at Texas Children's Hospital caring for David Vetter considered how they might help him experience life beyond the stationary isolator bubbles that protected him from the germs to which he was so susceptible. The girl next door makes a teen born with immune deficiencies want to leave his germ-free bubble. David Foreman Now, they sought advice about whether to risk having another child. Mary Ada Murphy: I really liked him. So I said to him, "If you think it should be terminated, you terminate this case. Who made the hole?" And they were unwilling to face the fact that this very intelligent child is going to grow into an awareness of his situation and is going to question it. Narrator: In the winter of 1975, doctors held a conference at the University of Virginia on the now-famous case of the Boy in the Bubble. The Boston procedure offered hope that Katherine's bone marrow could finally be used to kick-start David's immune system. When it all goes terribly wrong, he wishes never to experience heartache again. 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. - He can't say why he is unhappy but that he definitely is. I'm coming out of here; just stand aside.". I said, "Do you know what will happen if you make a hole in the isolator?" Mary Ann South, M.D. Then, in 1975, Dr. Wilson had a brainstorm: he would get NASA to design and build a miniature space suit for David. Turning to a book of magic, he invokes a spell to shield him from emotion forever. : None of the three of us were going to just sit by and let this happen. Tiffany Schreiber Am I coming through all right? I thought, "Oh my god, how can this bright, bright child survive in this little space?". "Here is a child who over time has so many punctures that his feet start to look like pin cushions. Directed by Randal Kleiser. I think almost any woman in that emotional state would have probably made the same decision. Raphael Wilson, Ph.D.: I said, "Well, what name do you want me to give this child? David Phillip Vetter (September 21, 1971 – February 22, 1984) was an American who was a prominent sufferer of severe combined immunodeficiency (SCID), a hereditary disease which dramatically weakens the immune system. Proof that a virus can cause cancer was probably the most important of the many medical insights that emerged from David's case. And he was just adorable. Directed by Kealan O'Rourke. Surrounded by his family at home, David's mood lightened for a time. The Montauk Club And they had made great adventures where they explored other planets, in which he got to be a swashbuckling space captain. Raphael Wilson, Ph.D.: They asked, "Well if we have another child, could you deliver this child germ free? William T. Shearer, M.D., pediatric immunologist This was going to be a dignified death. News, archival: Right now, he's been restrained to his little bubble world and he's never really been able to get out and walk and play and maybe go to the zoo. Narrator: In what seemed like an instant, the isolator had gone from a stopgap measure to David's permanent home. Coryander Friend But they're bad; they'll make you sick. Carol Ann Vetter Demaret: I don't know if 'confused' is a good word for the doctors. And away from the germs?" Well we're very optimistic about David's problem, with all his genius doctors working on his case all over the world, we truly believe that one day, soon, David will be able to come out. For 12 years we've known the youngster simply as "David the bubble boy." Carol Ann Vetter Demaret, archival: What's wrong with the edges on this lid? Narrator: Shearer had David examined by a team of psychiatrists. Keith Malone Nurses' chart notes: The immunization experiment will include the following: bacteriophage will be given intravenously. Since his death, David's name has receded; millions have come to know him simply as "the boy in the bubble," popularized by Paul Simon's hit song, a feature film, and television's "Seinfeld.". Carol Ann Vetter Demaret: It was New Year's Eve when I took his temperature and it seemed elevated. Medical conditions like SCID raise many questions — and provide few easy answers. TV-PG | 1h | Documentary, Biography, History | Episode aired 10 April 2006. WGBH Media Library "Yes," we said, "yeah, we would. But you don't always know the answer to that until way down the road. James H. Jones, Ph.D.: Scientific curiosity, the desire to test technology, to see what is possible, has to be tempered with a very deep respect for our need to be human. And it was. Michael Smoler, On-camera Actors They offered too much and they gave too much. Lauren Prestileo, An Ark Media film for American Experience in association with Channel 4, ©2006 WGBH Educational Foundation and Ark Media LLC. While this movie was so heartwrenchingly painful to watch that I had to pause, grab some tissues and wipe my eyes so I could continue to see, it was one of those rare documentaries that explored the entire life of the "Boy in the Bubble" - and, by the way, no one should forget his real name, David Vetter. But David Vetter, a young boy from Texas, lived out in the real world - in a plastic bubble. Walls were triple scrubbed, windows sealed, and all non-essential equipment removed from the room. There was no way to conscientiously, in their thinking, remove this happy child from this protective environment and expose him to the dangers of the world. Vanessa Ruiz On the other hand, removing David from his bubble would kill him, and while he was alive he provided a unique opportunity for Wilson and others to learn more about his disease. Mary Ada Murphy, Ph.D.: Night after night we would make all these trips all through the universe. The Vetters appeared to be shaken by this discussion. John R. Montgomery, M.D., Pediatric Immunologist: If you take care of the patient better by doing nothing, you should do nothing. Broadway Manor Bed & Breakfast Narrator: But as months turned into years, there was little real progress in the search for a cure. He received his medical care at Texas Children's Hospital, part of the Texas Medical Center in Houston and a teaching hospital of Baylor College of Medicine. Kay Gallindo Mary Ada Murphy, Ph.D.: It was the mental anguish of knowing that tomorrow is just going to be like today, only worse. Claire M. Bassett Edwin F. Beschler Narrator: But the doctors' confidence had obscured another set of odds stacked even higher against the Vetters: even if their baby could be kept germ free, the chances of performing a successful transplant were small. Patricia Bealmear, Ph.D. His work includes films for the acclaimed PBS series FRONTLINE (College Inc., Growing up Online) and American Experience (Into the Amazon, The Boy in the Bubble, Kinsey). What Wilson needed was a baby born into the bubble. Immunologists had learned how SCID suppressed the immune system. Carol Ann Vetter Demaret: David never questioned in the early years, why he was in a bubble. Jacqueline B. Vogel, Child Play Therapist: Incredible advances in medical technology are based on optimism. Ravi Jain : For these many years we had had a success story, and should this happen, this would be the ultimate declaration that it was a failure that the whole thing was a failure. Mark Roy Afflicted with a rare hereditary disease, severe combined immunodeficiency (SCID), David was defenseless against any germs. They had expected Katherine to be a perfect match for David. University of Virginia School of Medicine James H. Jones: What happens very quickly, questions are raised spontaneously from the audience, questions that had never been asked before. Archival, news: There's a very special little boy here: one who is waiting to leave the hospital for good and go outside. I was just keeping things going. "He saw the world as flat. The Boy in the Bubble In the early 1970s, an unusual boy captivated the nation. The barrier to a bone marrow transplant, or any other possible cure, remained as insurmountable as ever. Instead a series of eye signals will trigger this well-prepared team to make the delivery. Historic Films Archive Mary Ann South, M.D., pediatric immunologist : You would go in the room and he would be just sitting there, staring into space. I made the pinwheel and put it on his blower. Rebekah Suggs, Online News report, archival: There's a very special little boy in there -- one who's waiting to leave the hospital for good and go outside. We had decided that it was not going to happen. FILM Archives Narrator: The medical team now faced a choice: they could leave David in the bubble hoping that his immune system might kick in or a new treatment be found -- or they could take him out and let his disease run its natural course. He never wore anything but lightweight clothing in his life, but as an infant, the small buttons were difficult to maneuver and his mother, Carol Ann Vetter, sometimes resorted to using the adhesive tabs from a disposable diaper to keep his shirt closed. James H. Jones, Ph.D.: He was certain that if SCID children could be isolated, keeping the child physically free of germs, given time there would be a way to jumpstart their immune systems before they became damaged by infections. Sam Henriques Medicine was on a roll. At the same time as Wilson arrived at Texas Children's, a young couple named Carol Ann and David Vetter were undergoing genetic counseling at the hospital. News, archival: A specially designed suit allows him to experience the world. His psychological development, if anything, is ahead. The procedure was to take place under totally germ free conditions -- one of the first such operations ever attempted in the United States. Patrician Bed & Breakfast Raphael Wilson, University of Virginia conference, archival: When he was two years old, we built him this playroom, which has solid plexiglass walls. If they get in, they'll make you hurt all over." He didn't really look like a newborn. Directed by Jimmy Morrison. Rev. I would notice that David would spend a lot of time gazing outside. John R. Montgomery, M.D., pediatric immunologist The Boy in the Bubble Transcript The Boy in the Bubble From "Seinfeld": A bubble boy? Unlike other SCID babies, David had remained germ free inside his bubble. : I'm an old athlete and that was an opponent who had defeated me without giving me much of a chance to fight back. From "Bubble Boy": Why are you in that bubble, boy? Following World War II, important advances in medical technology -- from the iron lung to the artificial heart -- had emboldened doctors. Narrator: For decades, his story has echoed through the popular culture. Small blood samples will be taken at three days, five days, seven days, 14 days, 21 days ... James H. Jones: David was a research subject as well as a patient. It's depriving the parents of the choice that they have to make: to confront the options that have to be confronted. Carol Ann Vetter Demaret: I don't have regret and I don't have blame. She, of course, had just lost the other baby. Archive Films by Getty Images Terry Sharrer All of this black hair -- just precious. This contraption that protected him was now his greatest threat. Mike Gentry Patricia M. Bealmear, Ph.D., Researcher: It was amazing to see him develop. Narrator: Steeled by the doctors' resolve, the Vetters demanded that Dr. Shearer maintain David in the bubble until a cure could be found. There were a lot of theories. The Boy In The Bubble « See All Songs Lyrics: It was a slow day And the sun was beating On the soldiers by the side of the road There was a bright light A shattering of shopwindows The bomb in the baby carriage Was wired to the radio. Katherine Vetter was almost four years old when her brother David was born with an immunodeficiency disorder. While the scientific harvest had been rich, it had done little to help David. William T. Shearer, M.D. The Boy in the Bubble. His doctors knew of a recent case involving German twins kept in isolators. Nurses' chart notes: Glenn Fukushima, Project Administration News, archival: Hello, everybody. John R. Montgomery, M.D. Patricia M. Bealmear, Ph.D., researcher He could do something, you know, to the isolator that would get everybody going. Why are we putting this child through all of this?". We wanted to have children right away; we wanted to have as many as God would send us. Mary Ada Murphy, Ph.D.: The sun was coming through in little streams through the Venetian blind and he saw what he called -- he said there were minute snowflakes -- and it was actually the dust from the linen. His point was that you have a case to treat. Julia Landau William T. Shearer, M.D. James Reid, Visual Effects | I was born without any immunities. Long-term isolation is no longer offered as a treatment option. transcript. Dr. Rafael Wilson, an immunologist, led David's care. Raymond Lawrence: When I first saw David I was very disturbed -- I think deeply disturbed -- by the fact that he was in this laboratory tube. : He was to the point where his fever could not be controlled. Individuals born with SCID are abnormally susceptible to infections, and exposure to typically innocuous pathogenscan be fatal. Narrator: After only six walks, David refused to get back in the space suit and it was permanently retired. But still he did not understand the wind outside. If you continue to pretend that this treatment or this environment, this plastic bubble has not turned into a prison. David was taken down the hall to visit him. NASA Johnson Space Center Narrator: Finally coaxed down a 10-foot long tunnel into the suit, David took his first tentative steps outside the bubble. But if there is even a remote chance of success, for goodness sake, take it. Keith Malone ", Mary Ann South, M.D. And he just couldn't believe it. I said, "I baptize you David Phillip in the name of the Father, and of the Son and of the Holy Spirit.". "There were so many things he couldn't understand, like wind," explains Mary Murphy, a child psychologist who worked with David for seven years. The original promise to quickly cure David had been replaced by what Dr. Wilson himself called "a holding pattern". And that was -- that was the end of that. : We were doing all right. Everything was quiet. Narrator: Jack Montgomery left a few years later. Donna Aldridge And now they had no way out. The 1962 documentary Lonely Boy, directed by Wolf Koenig and Roman Kroitor, is a film about the manufacture of a pop idol.Paul Anka, the subject of the documentary, is a popular performer at the peak of his career, but the directors use a variety of strategies to express their view of him as an isolated figure who is seen by his handlers as a piece of merchandise and whose success is questionable. Comprised of a 5-foot by 3-foot living chamber, it was connected to an even smaller supply bubble. Caring for any infant or child has its challenges without having to handle him with rubber gloves through a plastic bubble. David Vetter Gets a Germ-Free Mobile Suit. Sucking his thumb constantly and rocking back and forth... We were devastated. 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