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The Boy in the Bubble
Online Forum: Day 1

Day 1:
April 10, 2006

This question is for the filmmakers. Did you end up making the film you expected to make?
A. H.
Los Angeles, CA

Answered by Barak Goodman:
Thanks for the question; it's a good one. I'm never really sure what to expect when I begin a film. Usually, I start with a bunch of questions -- in this case whether David's story might serve as a way of exploring important ethical questions in medicine. Was the gamble taken by David's doctors justified? What did they know and when did they know it? What were the cultural factors that might have guided their decision-making? That said, I think it's vital to stay open throughout the process. Some filmmakers write a script before they begin, and essentially film the script. I think that's a very serious mistake. I think you have to be ready to be swayed by what you hear. For me, the process is one of constant questioning, constant reevaluation. That makes for very slow filmmaking, but in the end I think yields a truer and more subtle picture.

To come to your question, I think the final film may be a little tougher on the original three doctors than I had expected. The more I learned about this story, the more troubled I became by the way in which they came to the decision to place David in the bubble. I came to believe that they had allowed optimism -- and perhaps an unwillingness to brook failure -- to cloud their judgment. I don't think the Vetters were ever really given a sober and realistic picture of the odds facing David. They may have decided things the same way if they'd had the benefit of good advice, but they were never given the option.
Thanks again, Barak

Answered by John Maggio:
When I first started thinking about this film the issues seemed very black and white to me. Here was a group of doctors that wanted to test technology and an unsuspecting young family became ensnared in their plot. But when I started to talk with everyone, the doctors, nurses and technicians, and then meeting Carol Ann, I began to see that the situation, as is often the case, was so much more complicated.

Dr. South, who was the first of the medical team I met, bowled me over with her honesty, and in our first meeting she told me about the children she and Jack Montgomery watched die from SCID, and how grateful she felt to maybe have a chance to save one.

I believed Carol Ann when she told us she really didn't think that God would do this to them twice, and so proceeded with the pregnancy. Who was I to question her faith?

But I think it was the fact that in the midst of making this film my wife gave birth to our first child and that really made me think hard about all of these issues. What would I do if I knew there was a chance to save my child? Wouldn't I try everything to save him? In the end I think we portrayed the story as honestly as possible, asking the hard questions of our experts, the doctors and the family and fighting a lot of battles in the edit room along the way. I'm not sure I'm any closer to knowing what I would have done in that situation, but I'm not sure any of us could ever know for sure what we'd do. Thanks for watching and thanks for your question.

I'm looking forward to watching "The Boy in the Bubble" tonight. I remember reading about him in the newspapers when I was young. It always seemed like they were trying to make it seem like a normal childhood. Do you think that the people around David and the media presented too positive a view of him at the time?
N. F.
Framingham, MA

Answered by James Jones:
Throughout David's life, his parents and his physicians struggled to maintain hope under very difficult circumstances. In the early years their heroic efforts to make David's life as normal as possible met with considerable success, and David developed as well in the isolator as anyone could have expected. Thus, the early reports about David were largely accurate. Over time the enormous difficulties that confronted a child confined to an isolator took a toll on David and he had to struggle to maintain his emotional equilibrium against recurring bouts of anxiety and depression. The image of David that was presented to the public remained largely unchanged, however, as his parents and care givers elected to maintain a zone of privacy about the state of his emotional health.

After David's birth, Carol Ann seemed not to have had any more children. Did they ever consider having another child in the hopes of providing a better match for bone marrow transplant or another companion for David in the bubble?
P. P.
Little Rock, AK

Answered by Carol Ann Vetter Demaret:
No, we had hoped to have another baby, but then David was born with SCID. So, no, we never contemplated it, never talked about it. It would have been wrong to have had another child to support David. It is not the gift of life as I see it.

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The Boy in the Bubble American Experience