30 years ago, the world was told of David Vetter, the boy who had spent his entire life in a sterilised plastic bubble. David was born with an unfortunate genetic mutation that robbed him of an immune system. Consequentially, the usually harmless bugs and bacteria all around us in everyday life could potentially kill him. Thankfully, there are now improved treatments and procedures to combat the effects of this mutation.
When David Vetter was born in 1972, his parents were aware of the 50% chance that he would have severe combined immunodeficiency (SCID), as they had already lost a child to the disease the previous year. SCID is a genetic disease, most commonly inherited as aconsequence of a mutation on the X chromosome, which results in a lack of functioning T- or B-lymphocytes. Therefore, the affected child has no functional adaptive immune system *due to the crucial role that T- and B-lymphocytes play in the adaptive immune response). A child born with SCID is highly susceptible to infectious diseases, most commonly pneumonia, diarrhoea and thrush infections Moments after he was born, David was placed in the sterile ‘bubble’, in which he would live for the majority of his short life. He only ventured outside the bubble in a special sterile suit designed by NASA. At the time of his birth, there was no known cure for the disease and chances of a bone marrow transplant failed when the doctors learned that Vetter’s sister Katherine was not a match.
When David was 12 years old, his doctors informed him of an experimental procedure that would hopefully cure his condition. The idea was to use his sister’s bone marrow but to destroy the T cells already present in her bone marrow in a process called a haploidentical transplant. Human leukocyte antigen (HLA) is a protein used to match donors in bone marrow transplants. In a normal bone marrow transplant, 7 or 8 HLA markers out of 8 are required to be the same (as opposed to about 50% similarity in a haploidentical transplant). This lower requirement for compatible HLA markers made it possible to hope that David would be able to grow a somewhat functioning immune system. Sadly,Katherine’s bone marrow contained cells with the Epstein-Barr virus and thus they were transmitted to David. Although Katherine’s bone marrow was screened, the technology required to detect the virus did not yet exist. David died from Burkitt’s lymphoma, a cancer associated with contracting the virus, in February 1984.
In today’s world, advanced technology has elevated the survival rate of children born with SCID. The most common treatment is still a bone marrow transplant, which, when performed in the first three months of life, has a very high success rate. Gene therapy has been experimented with as a possible cure with some success, but more research is needed. Another alternative is enzyme replacement therapy, during which the patient is injected with polyethyleneglycol-coupled adenosine deaminase(PEG-ADA) to prevent accumulation of deoxyadenosine which prevents DNA synthesis and also leads to immature lymphocytes.
David Vetter’s story raises many ethical questions for consideration. No cure was available when David was born, and so the doctors who treated him have been accused of using David to further their immunological knowledge. As they knew that he would never be able to lead what is considered as a ‘normal’ life, their experimentation appears committed to the progression of science as opposed to the wellbeing of the ill child. The Chaplain of Texas Children’s Hospital where David was treated, Rev. Raymond Lawrence said that “they [David’s doctors] operated on the assumption that you could live to be 80 years old in a bubble, and that would be unfortunate but okay.” However, David’s doctor John R Montgomery argued “If you take care of the patient better by doing nothing, you should do nothing. But if there is even a remote chance of success, for goodness sake, take it” and that placing David in the bubble was the only way he could survive. David’s mother, Carol Ann also argued against Lawrence saying “I don’t have regret and I don’t have blame. Any parent who has lost a child wonders if their brief life has meant something to the world, and science has said to me: yes.” David did, however, leave a legacy. His short life proved that genetic disease needed to be treated upon a genetic, rather than a superficial symptomatic, level. David propelled the world into a new era of medicine.
I think the only way to sum up the David Vetter story is by the writings on his gravestone. “He never touched the world, but the world was touched by him.”
Ackerman, T. (2009, February 21). ‘Bubble boy’ medical legacy lives on 25 years after death. Houston Chronicle .
Goodman, B., & Maggio, J. (Directors). (2006). The Boy In The Bubble [Motion Picture].
McVicker, S. (1997, April 10). Bursting the Bubble. Houston Press .