Subject: I have found a DVD that I think you would enjoy
|The American Experience The Boy in the Bubble|
Directors: Barak Goodman, John Maggio
Genres: Television, Documentary
When David Vetter died at the age of 12, he was already world famous: the boy in the plastic bubble. Mythologized as the plucky, handsome child who had defied the odds, his life story is in fact even more dramatic. It is a... more »
A must see - compels viewers to think about medical ethics!
K. Corn | Indianapolis,, IN United States | 05/05/2006
(5 out of 5 stars)
"While this movie was so heartwrenchingly painful to watch that I had to pause, grab some tissues and wipe my eyes so I could continue to see, it was one of those rare documentaries that explored the entire life of the "Boy in the Bubble" - and, by the way, no one should forget his real name, David Vetter. He so often is known only by his nickname.
And another point, one easy to miss when watching a child who seems so very different from "normal" children - his life and the medical choices made in treating him - still connects to the choices made in medicine today. Patients, doctors, parents and children STILL face decisions about treatment plans and ethics, especially in the face of rising health costs. That makes this documentary more timely than ever.
The focus of the movie is on the birth and relatively short life of David Vetter, who spent his entire lifespan within a "bubble" (which was actually a germ-free hospital room) because he had a genetic condition known as SCID - Severe Combined Immune Deficiency.
The result of his disease? Essentially, he had no immune system. A common cold could kill him. In short, he couldn't live in the world as a normal baby could. He had to be kept in a special isolation chamber, germ-free and sterile.
As the whole history of David's birth and subsequent life played out on my television screen, I couldn't help but think about how some very well-intentioned people - especially the doctors at Baylor College of Medicine - created a terrible situation...and this made me think about how many other supposedly "humane" medical treatments result in so much pain and suffering for the patient that one has to question the treatment itself.
In David's case, the doctors put him in a special room with the belief that they were buying time to find a cure for his condition. But that cure never came in his lifetime (although his death and the knowledge gained from him paved the way to successful treatment of other children with the same condition).
David was forced to reach his teen years trapped in that room and the isolation eventually took a terrible toll on his psyche, a point made clear by film footage of him through the years as well as from interviews with the psychologist who worked closely with him. His parents also suffered, not being able to touch their child with their bare hands, not being able to see him outside the hospital, being forced to leave him alone in that room when they went home or went on with their lives away from the hospital. Imagine having to leave your baby in a room every time you left the house. Imagine NEVER being able to take that baby with you, to travel, to go to the park, etc.
After watching this film, I wondered - and every viewer should wonder- what is the line between inevitably harmful medical treaments and those which are truly compassionate and helpful? Was it wrong to try and save a baby's life when there was no cure in sight? As time went on, as years and years passed and no cure emerged, should the whole thing ever have been deemed a "failure".... or is life so precious that we should preserve it at all costs, even if taking care of one person consumes hundreds of thousands of dollars and leaves the patient severely compromised, emotionally and physically?
And the ultimate question - how do we deal with decisions like this as a society and what is the truly humane choice?
I can't say what decision I'd make in the same circumstances. Once born, no one could let David die (although there were doctors who tried to get the necessary permission to do so). But there were far MORE doctors, nurses and, of course, David's parents who could not let him go, even as they watched him psychologically deteriorate before their eyes, especially when puberty hit. They were not only attached to him but they were committed to saving his life.
But, ultimately, some of his doctors betrayed him, (especially from David's perspective), going on with their own lives and moving away. David was grief-stricken - and I was felt anger at those doctors even as I understood how painful it must have been for them to see this child, a daily reminder of their failure to cure him, trapped in that room day after day.
He was so terribly different, so terribly alone...and yet, who can say what the right choice was? He contributed a great deal, however inadvertently, to research and the treatment of his condition. He was a happy baby and his parents loved him deeply. Losing him was a terrible blow. He had many moments of true joy and if life is ultimately precious, he got to stay alive for years longer than he would have outside that room. He probably would have died within days of his birth - or, at most, within a few months.
And yet... watch David closely in this film....watch those happy eyes as they show more and more sadness over time...see his fear of germs grow as he matures and comes to a full understanding of his condition....view the germ-free suit that NASA came up with so he could go out into the world and then see a boy so terrified of that world, a world full of germs, that he eventually refuses to use the suit and retreats back to the bubble...you have to think about which choice was ultimately best for David. Keep him alive? Or let him die before he became fully conscious of how limited his life would be?
I don't have a definitive answer, don't know what I would have done if I'd been pregnant and the doctors had held out hope of a cure "on the horizon." Perhaps I would have made the same choice as the Vetters, wanting to keep my unborn baby alive, not thinking about the possibilities if things didn't work out.
But I HAVE thought deeply about every medical choice I've made for myself and my children since watching this film. I know that even the best doctors can give some short-sighted advice, focusing on immediate treatment options rather than taking the whole condition and prognosis into consideration...and that includes quality of life decisions.
I urge you to watch this film and then think about the ethical implications of medical decisions large and small. David's life connects to each and every one of us and that is a lesson that should never be forgotten. Along with fighting like h--ll to cure what can be cured and to search for treatments for what MIGHT be cured, perhaps doctors should also learn to acknowledge what isn't within their powers to fix and to leave well enough alone. Sometimes doing "the right thing" does a lot of harm.