David Phillip VetterDavid Vetter

David, better known as the “Bubble Boy”, lived in Shenandoah, Texas. He was born with Severe Combined Immune Deficiency Syndrome (SCID), a rare genetic disease. David’s parents knew the chances of conceiving a child with SCID were high and still decided to have a child. They had a daughter named Katherine. Their second child David Joseph Vetter the 3rd was born with a defective thymus. This is a gland that is important in the functioning of the immune system. He died at 7 months old due to a genetic condition. After their second child died the doctors told them the chances of conceiving another child with SCID was 50%. They knew the child would have to stay in a bubble until a bone marrow transplant could be done. They did not think about what would happen if they could not find a match for the child. They were expecting a quick fix, the miracle cure. So they rushed and had a baby. They were going to use their daughter as a donor.
David was born September 21, 1971. Within ten seconds of being born David was placed in a plastic germ free environment. He would spend the majority of his life here. His sister would not be a match so no transplant could be performed.  For 12 years David lived in the plastic room. Everything had to be sterilized before it could be placed in the room with David. At age 5 he poked holes in the plastic at which time the doctors told David about his condition and the risk of germs to him for the first time. In 1977 NASA researchers develop a special space suit that would allow David to leave his room and go outside. He was scared of the suit and said that “that is where germs live”. He eventually became comfortable but only used it about 7 times before he got too big for it. At the age of 12 doctors decided give David an unmatched bone marrow transplant using his sister as a donor. David’s operation seemed to go well for a few months but then David became sick for the very first time in his life. He started having diarrhea, fever, and severe vomiting from intestinal bleeding. David was removed from his plastic room for treatment due to the severity of his symptoms. He was asked if he wanted to come out of his bubble for treatment to which he replied “Daddy, I will agree to anything to feel better”.  David continued to get worse and eventually slipped into a coma. At this time his own mother was able to touch his hand for the very first and last time before he died on February 22, 1984 from Burkitt’s Lymphoma, a cancer of the lymphatic system B lymphocytes in particular). It was later discovered that Katherine’s bone marrow contained traces the dormant virus Epstien-Barr, also called human herpesvirus 4 (HHV-4). It had gone undetected in pre-transplant screening. Once the virus was inside David system it spread and produced hundreds of cancerous tumors that were found during his autopsy.
David’s story as sad as it is, has a happy side as well. The research and knowledge we have gained because of David’s story has saved many lives.

 

 

Wikipedia.org
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 (SCID). 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 inside a special bubble-like structure at Texas Children's Hospital in Houston. He died in 1984, at the age of 12, after a bone marrow transplant from his sister.

 

David's parents, David Joseph Vetter Jr. and Carol Ann Vetter, had one daughter, Katherine; their second child, a boy 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. However, a group of doctors 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 was eager to have another child, 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 had been no discussion of what would happen in this case, or how long the prospective child would remain in the bubble.

The Rev. Raymond Lawrence, the chaplain of the hospital at that time, 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 so that they could have a test subject for studies, a charge which is denied by the three involved doctors.
BirthA special sterilized cocoon bed was prepared for David at his birth. Less than ten 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.

After finding out that David's sister, Katherine, was not a match for the transplant the boy needed, the bubble that was set up as a temporary solution became his home.

[edit] Life in the bubbleWater, air, food, diapers, and clothes were disinfected with special cleaning agents before entering his cocoon. 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.

David himself, even as a baby, was handled only through special plastic gloves attached to the walls.

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.

The researchers and his parents tried to give him a life as normal as possible: he had formal education and had a television set and playroom inside his bubble. However, David 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."[1]

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 different 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 of Return of the Jedi at a local movie theater that David could watch from his transport bubble, used to take him from his home to the hospital.[2][3][4][5][6][7]

[edit] Poking holes in the bubbleWhen David was four years old, he discovered he could poke holes in his bubble 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.

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, visited David at Texas Children's and he "served as a kind of tourist attraction for VIPs."

[edit] Psychological and ethical aspectsAlthough 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 seemingly 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 four, 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."

[edit] NASA suitIn 1977, researchers from NASA used their vast experience with the fabrication of space suits to develop a special US$50,000 ($181,200 in 2011) suit that would allow Vetter to get out of his bubble 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 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. 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.

[edit] DeathAfter many years, David's situation became unbearable. The small expectations for finding a cure were still the same as a preteen 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 was spent on David's care.

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 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 died 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 undetectable 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. His mother said "[i]t 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."

[edit] AftermathAn elementary school in The Woodlands in unincorporated Montgomery County, Texas was named David Elementary after Vetter. It opened in 1990.

David's parents later divorced, with his father becoming the mayor of Shenandoah, Texas and his mother marrying a reporter for People magazine who had written about David's case.

David's psychologist Mary Murphy, whom he called his best friend, 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.

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