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David’s story was closely followed by the US media, and while he was still alive, he got a “bubble boy” (“bubble boy”) Nickname. Unfortunately, 1984 She died at the age of 12. She never left a bubble like that.
Portal invites you to know this sad story. True, we can immediately give hope: now the most severe combined immunodeficiency (Severe combined immunodeficiency, SCID), which David also had, with children already living full lives.
David falls into the bubble
David was born in 1971. September 21 Children’s Hospital of Houston, Texas. After only 20 seconds, he was put in a plastic bubble that isolated him from the world.
As you have probably noticed, the bubble was prepared in advance. David was not the first child in the Vetter family to be born with SCID. Carol Ann Vetter and David J. Vetter’s first child, who died at the age of 7 months, died from the disorder.
Vida Press nuotr./Davidas Vetteris
SCID is a rare inherited disorder that significantly weakens the immune system. Newborns born with SCID are particularly susceptible to infection. For those children, becoming infected with a virus or bacteria that another child would not even feel could be fatal.
Newborns generally die in the first year of life if the disorder is not diagnosed early and action is not taken. Fifty years ago, the only treatment was to place the newborn in a completely sterile environment and wait for a suitable donor to appear for a bone marrow transplant to appear, then take its first steps.
After Carol Ann Vetter found out she was expecting a boy again, doctors told her there was 50 percent. the chance that your second child will also be born with SCID, a disease that only boys have. Veterinarians were offered an abortion, but decided against it.
Only Vetteris’ second child was born and placed in a “bubble”, a specially designed ultra-sterile plastic sleeve.
It was supposed to be just a temporary home for David. A test was first performed to determine if David had SCID, and after a positive diagnosis, it was hoped that David would be able to transplant his sister Katherine’s bone marrow. However, it turned out that she was not a suitable donor for David.
Doctors later hoped that maybe if he survived his childhood, David would pass SCID and could leave a bubble later. Unfortunately, those hopes did not materialize.
This created the dilemma of whether it is ethical to raise a child in a bubble. In the end, it was decided yes.
For one thing, no child had previously been raised in such circumstances, and no one knew what effect that isolation would have on David’s development, be it physical, mental, or emotional.
Taking him out of the bubble, on the other hand, would have spelled an almost certain death sentence for David. And as long as the bubble existed, there was also the hope that a donor would be found or that a new treatment for David’s disease would emerge.
Water, food, air, and clothing were sterilized before they entered the bubble by holding them at 60 degrees for four hours and then ventilating for several days.
Special gloves were placed on the walls of the bubble. That was the only way to touch David.
Life in a bubble
After spending the first three years of his life in the hospital, David spent more and more time at his parents’ home, albeit in a bubble.
Another bubble was specially built for him for his parents’ house and a travel bubble in which he could be transported. Donor searches continued but were unsuccessful and no other treatments emerged.
At age six, David took his first steps out of the bubble. It happened thanks to NASA.
The US Space Agency created a special suit for David that is reminiscent of astronaut suits that he could wear and play outdoors. To get out of the bubble and reach the suit, David had to crawl through a sterile tunnel.
Photo by NASA / David Vetter in suit
Every time David wore this suit, the caregivers had to complete a special 24-step program to render him completely sterile, and another 28-step program to put David in the suit correctly without endangering him.
Although the procedure was particularly complicated, it was worth doing just because it finally gave David’s mother the opportunity to have her son on hand for the first time. This happened in 1977.
But often to get out of the bubble David did not like it, he was afraid. Doctors and parents explained to him from childhood that microbes lived behind the bubble that could kill him. Therefore, David feared that germs would reach him even through a suit.
In the US, David became quite popular, and there was a lot of talk in the media. For some, the fact that he managed to survive so long generally symbolized the triumph of medicine and technology.
It seemed to others that this strange medical experiment had gone too far and that it was inhumane to raise a child in such conditions.
Already in 1976. Based on the life of David, the movie “Boy in a Plastic Bubble” starring John Travolta was made.
Well, and the performer Paul Simon in 1986. created the song “The Boy In The Bubble”, which won the MTV award for Best Video of the Year.
David’s presence in the bubble was beneficial to the doctors who were able to keep an eye on him. It was by watching David that much was learned about SCID before.
Left the bubble for a short time
Growing up in a bubble, David had lessons like the other kids. He was visited by teachers and he, being in a bubble, did not lag behind in learning from other children his age.
Photo by Wikimedia Commons / David Vetter receives a visit from a doctor at his home
However, for the most part, he was only able to see the world through windows, watching television and reading books.
For example, it was difficult for him to understand what the wind is about during the phenomenon. David also struggled with nightmares: a psychologist who visited him regularly said that David complained to her that he was constantly dreaming of a king of microbes who could not be defeated.
Over time, David more and more realized that he was different. Spending time at his parents’ house, he often looked through the wall of bubbles through the window where he saw children playing. His parents noticed that he was increasingly sad, not in the mood, although he himself avoided talking. of that.
In 1982, at the age of 11, David asked if he could see the stars. On the occasion of his birthday, he was first taken out of the bubble at night to see the starry sky with his own eyes.
In the same 1982 Hopes finally shone with hope. A baby born with SCID underwent a successful bone marrow transplant for the first time, although the donor was not entirely suitable.
Although the procedure was still experimental and the chances of success were not absolute, the Vetteri family, in consultation with David himself, decided to take the risk.
David’s sister, Katherine, became a donor. However, although the transplant itself was successful, four months after the transplant, David in 1984. died of lymphoma in February, a blood cancer disease often referred to simply as cancer of the blood.
The disease turned out to have entered his body along with the Epstein-Barr virus that he had contracted during surgery.
For many people around the world, this virus infection belongs to herpes harmless to the virus family, but to David it became fatal. At that time, there was not yet a test to help detect the virus before surgery.
Outside the bubble, David spent only two weeks before dying from the disease. He left the bubble on February 7 and died on February 22.
What is this disease?
SCID is now also being treated with a bone marrow transplant. Another way to combat this disease is through lifelong enzyme therapy.
However, in any case, it is important to diagnose the disease as early as possible; otherwise, the child simply does not have her first birthday. Around 15 children with the disease are born in Europe each year.
In the last decade, a new approach to fighting the disease has been introduced: gene therapy. Stem cells are taken from a patient’s bone marrow, the genome in the tube is repaired by replacing the damaged gene, and then the cells are returned to the body.
The technique of gene therapy as a treatment method is completely new: in 2016, SCID became the first general disease approved by the European Commission for the use of gene therapy in children.
So far, it appears that in patients who can apply this method, the therapy permanently cures the disease. It is true that even the first children to whom it was applied experimentally have not yet come of age, so there is still no definitive answer.
Prepared according to CBS News and PBS.
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