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The Boy in the Bubble
Online Forum: Day 5

Day 5:
April 14, 2006

What ever made Carol Ann and David want to have another child when they knew that child would have SCID?
M. K.
Portland, Oregon

Answered by Dr. Mary Ann South:
You've hit the nail on the head with your question. Thank you. The fact is that they did not know (the film's repeated statement to the contrary not withstanding). The doctors didn't know, nobody knew except God in heaven, that Carol Ann was a carrier. Before the second affected child was born to this woman there was no way to tell, no marker. We did learn from other X-linked diseases that in families with only one affected member (the Vetters' situation while they were dealing with their decision whether or not to try again), the causative mutation arises in the affected child himself and not in the mother in one-third of the cases. The family history is of prime importance in analyzing probability. Carol Ann's family history was clean -- no case, in any way suspicious of SCID. We could not give her solid figures for the probability of recurrence. The 50/50 chance mentioned several times in the film was an erroneous figure until after David Philip was diagnosed. Carol Ann answered to another question that they did not try again after they learned, for sure, that the mother was a carrier.

We as genetic counselors have neither the responsibility nor the privilege of deciding what is best for parents to do. We can only tell them the facts as best we know them. Our society cannot tell anyone what to do about their reproductive lives; perhaps that would be permitted, and even required in Communist China, but not in the U.S.A. This fact is very apparent by the statistic in my native state of New Mexico where one-half of all babies are born out of wedlock. In many other states that statistic is not much better. How can we judge this couple who so obviously treasured their children and sacrificed so much for them especially on the basis of fallacious information presented here? The film (and Web site) were not lies and were not vicious. I did not find a vicious bone in the body of either John Maggio or Barak Goodman. And John's description of his own baby's birth was particularly touching. These and other false statements and omissions were, in my judgment, pure, unadulterated ignorance. In this case, as in all clinical research, death is not the enemy; neither is pain, sickness, misery, sadness or depression. The enemy is ignorance and that is what we aim to vanquish in our work. We will never finish our work; there will always be more to learn. We are obligated to our patients to let them teach us all they possibly can. David was a great teacher. We now have more than one generation since his death, who all need education about this disease; we have a lot of work to do.

It was my privilege years ago to hear my mentor the late Dr. Robert Good say to a mother (who's baby had a terribly messy, incurable, soon-to-be fatal disease), "We are so grateful for the opportunity to struggle with your little child's problem." That is the goal of our work -- to join in the struggle with parents and other caring people, not just to save the lives of those particular children, but to further the cause of all children and grown-ups in this imperfect world.

How did you come across David's story, why choose to take on such a topic; why David Vetter and not Ryan White or another child whose odds were stacked against? In making the film what was the biggest hurdle you encountered, were the people involved receptive to your ideas, were they grateful of what you were trying to do?
M. S.
Boston, MA

Answered by John Maggio:
To answer the first part of your question, we were not casting about to make a film about a sick boy, so it never entered our minds to investigate Ryan White or anyone else. Quite the contrary. It was in the process of making Kinsey for American Experience that we met Jim Jones, whose book is the definitive biography of Alfred Kinsey, and in the course of interviewing Jim he shared with us the story of David Vetter -- a story that was very near and dear to him. I believe Jim had been living in Houston during the time David was in the news and through David's story Jim's young son came to ask some difficult questions about death. I too could remember David's story and confronting the same issues for the first time after seeing news accounts of the "bubble boy." But Jim's retelling of David's story -- his struggles to develop emotionally, the difficult medical and ethical issues it raised, and his place in popular culture -- just fueled my desire to find out more, and we just started digging in. The biggest challenge was in establishing the trust of the family and the medical team. We needed to assure them that we were not out to sensationalize and wanted to tell the story objectively and honestly. That's always the biggest challenge in making these films. We are invading someone's life, you become enmeshed in their personal histories, it's an enormous responsibility, and it weighs on you over the course of the film. Fortunately, they were all very receptive to our ideas and trusted that we would follow through. Thanks for watching.

When David was a baby how were his clothes put on and diaper changed in the bubble? It seems like a difficult task.
J. C.
Northbrook, IL

Answered by Carol Ann Vetter Demaret:
David was two months old when he came home for his first visit. Truthfully, it was the most meaningful compliment ever extended to David's father and I. We were so happy that the hospital and his physicians trusted us to know that we could take care of David. I was rehearsed a few days before he came home on how to diaper him. I insisted that David wear regular clothes so he was always clothed in newborn outfits, and you know how tiny the buttons are on newborn clothes. I was able to maneuver those buttons through those black gloves, which was quite a feat. The gloves were all standard size nine because physicians, technicians, parents, nurses, everybody had to go into the gloves. A women's hand, for the most part, is, I think, a size seven. So they were big, they were cumbersome, but with determination, I was able to clothe David, to cradle David, to feed David, to bathe David, to cut his hair, to cut his nails -- all through the gloves.

All mothers would have learned the same thing the same way. It would have been such a tragedy for David's father and I had David not been able to spend as much time at home as he did. It was important to us to feel like we raised David. What was important to us as far as values, respect, faith and things like that -- I asked the hospital to comply with us so there would be no break in David's upbringing and they did.

How do you respond to the charge that the parents were talked into having a child so that he could be an experimental guinea pig?
N. C.
Mahwah, NJ

Answered by Dr. John Montgomery:
In counseling sessions with the parents we were asked the question what would you do. And my response was that I would have an amniocentesis and find out whether the pregnancy was a girl or a boy and I would have the girls and abort the boys since there was a 50% chance that boys would be affected with SCID. This was certainly not an answer to these Catholic parents, but it was honest.

When making the film and crossing paths with different ethicists, did any of them consider that David's care was abusive or negligent? Has anyone seen this case as an experiment gone wrong?
M. N.
Danbury, CT

Answered by John Maggio:
I think the most outspoken critic of David's care was the Rev. Raymond Lawrence. Rev. Lawrence, who appears in the film, was a critical voice early on in David' s care. He organized the first ethical discussion on David's situation while still on staff as chaplain of Texas Children's Hospital in Houston. On first seeing David he remarked that it was "as if he were seeing a rat in a cage" and it upset him deeply. He organized a meeting of hospital staff to discuss David's situation with eminent ethicist Dr. Joseph Fletcher which was the first time anybody had confronted the medical team. Later on, he wrote articles in medical journals offering his outspoken criticism of the case, one of the only people to do so. Rev. Lawrence offers his strong condemnation of the case at the end of our film, suggesting that David's life was an experiment that ought not ever occur again. Thanks for watching and for your question.

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