The boy in the bubble
(liffed from wiki)
David Phillip Vetter (September 21, 1971 – February 22, 1984) was a boy from Shenandoah, Texas, United States who suffered from a rare genetic disease now known as severe combined immune deficiency syndrome (SCIDS). Forced to live in a sterile environment, he became popular with the media as the boy in the plastic bubble. He spent most of his life at Texas Children’s Hospital, but in 1981, David was discharged to his parents’ full-time care. He died of cancer shortly after a hematopoietic stem cell transplantation, at the age of 12. David’s parents, David Joseph Vetter Jr. and Carol Ann Vetter, had one daughter, Katherine; their first son, named David Joseph Vetter III, died seven months after birth.
Doctors said that the baby boy had been born with a defective thymus, a gland which is important in the functioning of the immune system, due to a genetic condition, SCID. Each further son the couple might conceive would have a 50% chance of inheriting the same condition. Three doctors from Baylor College of Medicine — John Montgomery, Mary Ann South and Raphael Wilson — told the Vetters that if they had another child with SCID, the child could be placed in a sterile isolator until a bone marrow transplant could be performed, using the older sister, Katherine, as a donor. The couple were anxious to have another child to carry on the family name. So, believing that after a short treatment their child could live a normal life, they decided to go through another pregnancy. However, after the birth of David, it was discovered that Katherine was not a match, thus removing the possibility of the transplant. There was no private or public discussion of what would happen if no cure was found, or how long the prospective child would remain in the bubble.
The Rev. Raymond Lawrence, the chaplain of the hospital at that time and now Director of Pastoral Care of Columbia Presbyterian Hospital, said of the situation: “The great scandal of the Bubble Boy was that he was conceived for the bubble. The team that did this didn’t think through this very well. They didn’t consider what would happen if they didn’t find an immediate cure. They operated on the assumption that you could live to be 80 years old in a bubble, and that would be unfortunate but okay”.
Lawrence says that the original three doctors encouraged David’s parents to conceive David just so that they could have a test subject for their studies, a charge which is denied by the three involved doctors. Montgomery said: “I have to be honest that we never sat down and outlined ‘this is what we will do if’. It was an unspoken understanding that he would match Katherine, we would transplant him, it would work, and six weeks to three months later, he would be reconstituted and come out, and we would all be joyful, and maybe famous”.
A special sterilized cocoon bed was prepared for David at his birth. Less than 10 seconds after being removed from his mother’s womb, David entered the plastic germ-free environment that would be his home for most of his life. Devout Catholics, the Vetters arranged for Dr. Raphael Wilson who was also a monk, to baptize David once he had entered the bubble with sterilized holy water.
The doctors had decided that a bone marrow transplant might give David’s immune system a jump start; however they had expected that David’s sister, Katherine, would be a match. Unfortunately, that was not the case. Now, what was set up as a temporary solution had become his home, and as he grew, they had to allocate a hospital room in which he could live. As the years went by, David moved to other environments in the hospital, each one bigger to fit him and the bubble.
Life in the bbubble
Water, air, food, diapers, clothes, all were disinfected with special cleaning agents before entering his cocoon. He was handled only through special plastic gloves attached to the walls. Before anything could go into the bubble, extra glue and labels would be removed, the product would be placed in a chamber filled with ethylene oxide gas for four hours at 140 degrees Fahrenheit (60˚C), and then aerated for a period of one to seven days before it could finally go in the bubble.
The bubble had very loud motors that would keep it inflated, which made it difficult for David to have conversations and for people listening to hear him. When David was three, a playroom was added to his bubble, measuring 11 feet (3.4 m) long, six and a half feet wide and eight feet tall. When a United Press International photographer arrived to document David’s first venture into his new playroom, David refused to go into the new addition to his bubble. David’s mother called in Mary Murphy, a woman working on her doctorate in psychology and who had met David once before. Murphy convinced David to go into the playroom section to get a better glimpse of a goldfish she held, and she was then invited back for therapy sessions with David.
The researchers and his parents tried to give him a life as normal as possible: he had formal education and watched TV (the Hospital provided him with a small television set in his bubble). However, he longed to participate in the outside world that he could see out the window and on television. He said on one occasion: “Whatever I do depends on what somebody else decides I do. 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”.
By 1974, David, around age 3 could spend up to two or three weeks at a time at his parents’ home in Conroe, Texas in a bubble set up for him there. When he was home, his sister would sleep in the living room next to his bubble. The two siblings were close, although they would sometimes even have physical fights and shoving matches using the gloves into the bubble. Once, David punched Katherine using the gloves and then went to the other side of the bubble, where he couldn’t be reached with the gloves. However, in the end Katherine would have the upper hand in their disagreements: she could threaten to unplug his bubble, which she did a few times. Even if his primary bubble deflated, he had a separate area he could go into while he asked her to plug the bubble back in.
David did have friends and classmates who would come to his house to play with him, and in one case, a friend arranged for a special showing ofReturn of the Jedi at a local movie theatre that David could watch from his transport bubble, used to take him from his home to the hospital.
Poking holes in the bubble
When David was four years old, he discovered he could poke holes in his cocoon using a butterfly syringe that was left in his possession by accident. This led his doctor, Raphael Wilson, Ph.D., to tell David about germs and David’s special condition for the first time. Murphy would help David through any crisis he may have, but she said that David’s nurses mostly wanted him to “behave” and “be compliant”.
Eventually, David realized what his life would be like, according to Murphy: “Even though David was only five, he recognized his difference and dreaded what the future held — limited choices, feelings of alienation and an increased need to be polite and compliant so as not to reveal his anger”.
Many famous dignitaries, including members of royalty and opera singer Beverly Sills (whose childhood nickname coincidentally was “Bubbles”), visited David at Texas Children’s and he “served as a kind of tourist attraction for VIPs”.
Psychological and Ethical Aspects
Although the press created an image of a healthy young boy trapped in a bubble, David was psychologically unstable, primarily due to the lack of human contact, and the seeming hopelessness of his condition. Normally presenting a painstakingly polite facade, he was increasingly angry and depressed about his condition and would act out, expressing rage in a variety of ways, including once spreading his own excrement around the bubble. David was also extremely anxious about germs, including repeated nightmares about the “King of Germs”.
In 1975, when David was around 4, the hospital held an ethics meeting to discuss the specifics of David’s case. One of his original doctors, John Montgomery, said at the meeting that if he had the chance, he would conduct the same project with another child. When someone asked him “How many more?”, he replied: “Until I determined that there was no more information to be gained by such a thing, or if the outcome was certain”. No other meeting was ever convened on the matter.
Montgomery said in 1997: “At the time, we were encouraged by everything we knew. If people didn’t take chances, none of us would be here.Columbus would have stayed in Spain and would have been selling tortillas, because he was warned he would sail off the edge of the earth”.
In 1977, researchers from NASA used their experience with the fabrication of space suits to develop a special US$50,000 suit that would allow Vetter to get out of his cocoon and walk in the outside world. The cumbersome suit was connected to his bubble via an eight-foot (2.5 m) long cloth tube so that he could venture outside without risk of contamination.
On the day David, then around age 6, was to receive his gift, many scientists and the press attended to watch the “Bubble Boy” emerge from his bubble. To everyone’s disappointment, David refused to wear the suit for the press. A few hours later, after the press had left, he crawled down the tube, but upon pushing his head into the suit he let out a scream and exclaimed “That’s the kind of place where germs live!”. He had never taken more than six steps in any direction.
Later he became more comfortable with the suit, but only used it seven times before outgrowing it, never using the replacement suit provided for him by NASA. Both suits were sewn by GE seamstress Alyene Baker. A few years later, when Vetter watched the John Travolta movie based on his life, he laughed when the boy based on him could wear his similar NASA suit right into the bubble without sterilizing it first. David’s suit is now on display at the Smithsonian Institution.
In 1977, Beverly K. Eakman , Science Editor, Technical Writer and Editor-in-Chief of Roundup — the official newspaper of NASA’s Johnson Space Center (the primary of NASA’s 7 centers around the country) — wrote David, the Bubble Baby. The lengthy article was published inRoundup Nov. 25, 1977.
The National Museum of American History, a museum of the Smithsonian Institution, acquired the bubble suit in 1986.
After many years, David’s situation became unbearable. He was a full-grown boy and the small expectations for finding a cure were still the same as when he was a baby. Doctors feared that as a teenager he would become even more unpredictable and uncontrollable. The U.S. government spoke about cutting the research funding as it showed no results and there was a growing debate over the ethics of that experiment, with public opinion becoming less supportive of the project. A total of more than $1.3 million in 1970s dollars was spent on David’s care.
In 1980, when David was around age 9, his new doctors, Ralph Feigin and William Shearer (the original three had all left for careers elsewhere), suggested placing him on a regime of gamma globulin and antibiotics and removing him from the bubble in the hopes that his immune system had improved, but since that almost certainly would have condemned him to death, his parents refused after consulting with the original three doctors. Montgomery said “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”.
Three years later, at the advice of the original trio of doctors who had encouraged them to have David in the first place, David’s parents decided to allow his medical team to perform an unmatched bone marrow transplant, with marrow donated by his sister Katherine. Attempts to find a matched bone marrow donor since his birth had been unsuccessful, and advances had recently been made in unmatched bone marrow operations. Baylor filmed the operation against David’s wishes, and the marrow was given to David through intravenous lines running into the bubble.
The 1984 transplant operation went well, and for a few months hope was high that David would be able to leave the bubble. However, a few months after the operation, David became sick for the first time in his life; he started having diarrhea, fever and severe vomiting from intestinal bleeding. These symptoms were so severe that David had to be taken out of the bubble for treatment. In response to a direct question from his father on whether he wished to be taken out of the bubble, David replied “Daddy, I will agree to anything to feel better”. Out of the bubble, he continued to get worse and sank into a coma; his mother was able to touch his skin for the first and last time before he died. He passed away 15 days later on February 22, 1984 of Burkitt’s lymphoma at the age of 12.
Katherine’s bone marrow contained traces of a dormant virus, Epstein-Barr, which had been missed in the pre-transplant screening. Once inside of David’s body, the virus spread and produced hundreds of cancerous tumors, which were revealed in the autopsy.
David had always wanted to try Coca-Cola, after seeing it in many commercials and hearing about it from other children, but the sterilization process required to insert it into the bubble ruined the taste. After he exited the bubble, he requested a Coke but was turned down. His mother said “David had heard the word Coke so often on TV and from other children that he always yearned to try one. It was one of the first things he asked for when he was taken out of his bubble before he died. But the doctors decided he shouldn’t have one in his frail condition”.
David’s psychologist Mary Murphy, whom he called his best friend when he was alive, said that David asked her to someday write a true accounting of his life. She planned to do so in 1995 with the publication of her book Was It Worth It? The True Story of David the Bubble Boy, but the book was blocked by the attorneys of David’s parents.
Texas Children’s Hospital also opposed the publication of the book and attempts by Murphy to say what Vetter’s life in the bubble was like. A member of the team that treated Vetter said “It is important for you to understand that there is a powerful hierarchy at Texas Children’s Hospital. 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”.