12 years of living in a bubble
• 12 years of life in a bubble
This case is very important in the history of medicine - and not only because of the sad fate of the boy David Phillip Vetter, but also because of the huge chain of ethical problems it poses and to which there is still no clear answer.
Recall Tolstoy and his passage about unhappy families. Family Vetter, pious Christians, was unhappy because of genetic problems. Their eldest son, David Joseph Vetter III of, died at the age of seven months. The diagnosis is terrible and almost does not chance: SCID, aka alymphocytosis aka Glantsmana syndrome - Rinikera, it - severe combined immunodeficiency (SCID), he - thymic alymphoplasia. After the described cases of the disease will get another name.
The essence of the disease is as follows: a genetic defect disrupts the thymus, resulting in the unborn child are no (or almost no) T-lymphocytes and B-lymphocytes are, but do not work. Usually the disease occurs with a probability of 1: 100,000 infants (except Navajo and Apache, where the frequency of 1: 2500). However, if a boy is born with this disease, the likelihood that the next boy will be the same - 50%.
The only chance to save the life of a newborn - a bone marrow transplant. The family of a potential donor was Vetter - their daughter Catherine. Apparently, so they decided to still give birth to an heir. The more that doctors from Baylor College of Medicine - John Montgomery, Mary Ann Stout and Rafael Wilson - assured the parents that if the SCID did happen, it will be possible to put the boy in a sterile box to bone marrow transplantation. That is, if the bone marrow is not suitable for some reason nobody has thought.
The child was born, the bone marrow is not approached. The boy remained in a sterile bubble. He was baptized with holy water disinfected and remained in prison for a dozen years, until shortly before his death.
Before I get into the sterile cocoon David, water, air, food, diapers and clothes thoroughly disinfected. For David himself touched only by means of special plastic gloves, set into the wall of the bladder. Toys, books and other items were purified from the smallest residual adhesive labels and then placed in a chamber filled with ethylene oxide, and held there for four hours at 60 ° C, and then subjected to aeration for 1-7 days.
The boy became mentally unstable, irritable and depressed: he quickly realized what kind of life awaits him, and how it differs from ordinary people. In four years, he pierced his bladder forgotten someone syringe had to tell David about germs and deadly danger. Since then, the child added another phobia: fear of germs.
Curiously, the ethical questions the doctor asks the process once, in 1975. Then I am going to a consultation, on which John Montgomery said that, if he had the chance, he would have carried out such a project again with another child. When asked: "How long do you intend to carry out such projects?" - he replied: "As long as I decide that this is no longer squeeze any information - or until the outcome of the project will not be clear." More ethical Consilium was not going to.
When David was six years old, it decided to experiment specialists from NASA's, making the boy suit for walks. However, the boy for a long time could not bring himself to put on a suit (ibid germs!), And then - to get out of the bubble and see the first set of items. Anyway, only six years old child made more than six steps in the same direction. And NASA has published a detailed article on the experience of the construction of children's suit.
started 80th. The US government began to make noise on the topic is too expensive (more than 1, 3 million) experiment, becoming uncontrollable David and lack of hope. However, it was not clear what is offered - to kill him, or what?
Assign new doctors, who offered to pump the boy gamma globulin and antibiotics, which then meant certain death. Parents are completely abandoned, and then the team spent three years to convince parents to allow the same bone marrow transplant - all from the same sister. No, she would not be better suited, but there were some kind of anti-rejection for ten years. Persuading parents, an operation carried out (and, incidentally, against the wishes of the boy, filmed it on film).
It was found that the operation was a death sentence. In the bone marrow sister dozing David Epstein - Barr virus. Which, as it has already established a future Nobel Prize winner Harald zur Hausen, causes mononucleosis and Burkitt's lymphoma. Yes, this virus is almost everyone, but almost all of its presses the immune system, which did not have a baby. First, in the bladder, the boy developed mononucleosis, and had to be extracted from the bladder. First time mom for 12 years touched his son, and the boy immediately asked Coke had dreamed all his life. Coca-Cola is not given, found hundreds of tumors. Burkitt's lymphoma, coma, death, divorce of parents. In the disease came the name - "boy in the bubble syndrome".
personal psychologist and best friend David, Mary Murphy and did not let publish written at his request, "a true account of his life." A tombstone wrote the touching words: "He never touched the world, but the world has been touched by them."
Based on David's life filmed comedy "Bubble Boy," where everything ended well.
Is there an unambiguous ethical decision in such a case? We honestly do not know. But David Vetter deserves to be remembered about him and wondered whenever the question arises, what is better.