David Phillip Vetter 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.
David's parents first son 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. The doctors from Baylor College of Medicine 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.
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.
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.
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."
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 to tell David about germs and David's special condition for the first time. Untill he was five, he aready 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.
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.
By 1974 around age 3, David 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.
After 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.
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 theatre that David could watch from his transport bubble, used to take him from his home to the hospital.
In 1983, 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 died on February 22, 1984 of Burkitt's lymphoma at the age of 12.
0 comments:
Post a Comment