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The Boy in the Bubble
Online Forum: Day 3

Day 3:
April 12, 2006

At any time during David's courageous life, did he have a say in any of the decisions made about his treatment? At any time, did David want to discontinue the treatment and leave the bubble?
Sarah Cowan
Houston, TX

Answered by Carol Ann Vetter Demaret:
At no time did David say to his parents that he wanted out of his bubble. If he had said that, that's all he would have needed to say. We would have removed him and treated David's symptoms accordingly. It was our contention, from the very beginning, that we could not save the body if we were to lose the mind in the process. That would have been so unfair to David. I have always talked about David's courage throughout his life, and that is the one thing that has been uppermost in my mind that David knew what he had, he knew he had SCID, he knew the dangers of coming contact with a virus or an infection and he waited, as his family, as his physicians, did for science to find the right answer for him.

David had a say in whether to try the bone marrow transplant. We had explained it to David, his parents did, as it had been explained to us and David agreed. So, yes, David did have a say in the bone marrow transplant.

To me, David's situation reminded me of that of a hamster in one of those pet "habitats" -- such a cruel way to treat a child. I would like to ask David's original doctors: how could you discuss the situation as if you are basically OK with your involvement in this? Can you really be that in denial, or are you just trying to protect yourself?
Diane Cripps
Los Angeles, CA

Answered by Dr. Wilson:
Your question exhibits a very commendable concern for the welfare of others, especially those who are disadvantaged in one way or another, who need our help to protect them from cruel treatment and exploitation. We certainly share your concern. At Texas Children's Hospital, doctors are not free to do whatever they wish in their pursuit of research goals in the Clinical Research Center. All research projects that involve human patients must be submitted, including details of procedural details, for approval to a committee charged with the responsibility of protecting patients from harm and manipulation. David's protocol was approved by this committee. Furthermore, it is necessary to obtain informed consent from the patient (or in the case of infants and young children, the parents) to allow the proposed treatment. There are very strict regulations on how this consent is obtained. Coercion in any form is absolutely forbidden. David's parents were given a detailed written description of the research project to take home and study before signing it. It was also suggested to them that they consult their attorney as well to ascertain that all legal requirements had been met. These are standard procedures for all experimental procedures.

Your analogy of a caged hamster is understandable in the light of your obvious compassion for individuals, animal and human, who are subjected to hurtful conditions. However, there is a vast difference between a healthy hamster caged for the amusement of a pet owner and David, isolated to protect him from certain death from infectious agents in the environment. Furthermore, this isolation was never intended to be any longer than necessary to apply a suitable treatment to provide him with a functional immune system. Remember, too, that before David was born, we did not know whether or not he had SCID. There was no prenatal test available to determine that at the time. We knew only that there was a 50-50 chance that he did. If, after testing, it was determined that he had a normal immune system, he would have been removed from the isolator. Otherwise, he would remain in isolation until he could be treated or until his parents (and later David himself) decided to remove him from the isolator. When tests confirmed that David did have SCID, every step was taken to insure that all of his needs were met -- physical, emotional, social, and spiritual. This took the collective efforts of scores of dedicated people. The success of these efforts are well documented. So too are the ethical principles that guided us. The two most important ones are the principle of risk-benefit ratio and the principle of consequentialism. You can find detailed presentation of these in most books on medical ethics.

Best wishes in your advocacy for mistreated animals and human beings.

How do you answer your critics that David's treatment was an experiment that should have ended sooner than it did?
N. C.
Mahwah, NJ

Answered by Dr. John Montgomery:
Everyone is entitled a thoughtful opinion, but I remember something I heard from a very learned old obstetrician. The only opinions he said he was really interested in about abortion were from a doctor who had performed one and a woman who had had one, and everything else was pretty much cocktail talk. I try to listen to the opinions, but I think it's much the same -- that only physicians who have cared for SCID patients and parents who have had a child with SCID truly understand.

I am glad that we are being criticized for carrying on too long instead of stopping too quick.

How do you decide the few quotes to show from hours of interviews? Since 1974 Dr. South has been our long distance lifeline in caring for our son who has common variable immune deficiency. I know her to be a totally dedicated and compassionate physician. On one occasion, we drove more than 100 miles to a town where she was visiting family. She left them on Thanksgiving Day to meet us at the local hospital and deal with a problem that had come up. Too bad the program left viewers with a false or at the least with an incomplete picture.
R. P.

Answered by John Maggio:
I have no doubt that many of the doctors involved with David's care are fine human beings capable of exceptional acts of personal and professional kindness. It doesn't surprise me that Dr. South would extend herself this way, she has had a long career in pediatric immunology and has helped a lot of sick children, and unfortunately seen some die along the way. That said, Dr. South chose to participate in this film, she sat for an interview where she gave us an honest account of her role in David's care and we allowed her to respond to the difficult questions we raise in the film. You know, it can be said that all of the people surrounding David were trapped right inside of that bubble with him, Dr. South included. Maybe they still are. But I don't think her entire career should be judged by this case alone. I don't think anybody should be judged that way. Thanks for the question.

Answered by Barak Goodman:
I know Dr. South to be a caring doctor and am not surprised to hear of your experience. It is perhaps in the eyes of the viewer whether or not to judge her for having left Texas Children's Hospital early in David's life. On the one hand, it may be too much to expect of any medical professional that they yoke their careers to a single case; Dr. South has said that she stayed in close touch with David and the Vetters and tried to help as best she could from long-distance. On the other hand, it is also true that the three doctors had made an implicit pledge to the Vetters to keep David well until a cure could be found. I wonder how David must have felt, although he was very young, to see his principal caregivers leave. He couldn't leave.

As it happens, reactions to Dr. South have been varied. I am hearing from many, many viewers who deeply empathize with her, recognize her obvious love for David, and find her situation to have been intractable.

Thanks for your question.

How was David's care paid for all those years? If it cost $1.3 million, the parents couldn't raise the money to pay that kind of bill?

Answered by Dr. Mary Ann South:
The persons who are sick and dying, those the late Dr. Lewis Thomas called "the experiments of nature" are the last ones science should ask to pay for high advances to medical knowledge. The problem has been addressed by the federal government with the General Clinical Research Center (GCRC) program of the National Institutes of Health (NIH). The Texas Children's Hospital GCRC was established as a leader in the clinical study of infectious diseases during the 1964 rubella epidemic when over 500 babies with congenital rubella presented to us in Houston. Thus when Jack Montgomery and I both joined the faculty in infectious disease (1966), the stage was set for our studies of immune deficiency diseases that are mainly manifested as susceptibility to infections. We immediately established a protocol in the CRC for general immune deficiency diagnosis. When we found a person with an immune deficiency we wrote a protocol specific to that particular patient which could be modified at will with review and approval of the CRC advisory committee. The CRC provided patient space, routine laboratory and special equipment for patient care and study.

Numerous grants to individual investigators furnished the funds for the research studies. These grants were mostly from NIH, but also included non-government agencies such as the March of Dimes. There were private individual donations as well; the original isolator was a gift from one of the Texas Children's Hospital board members to his wife for her birthday. NASA, being just down the road, jumped in to help. Other medical schools' faculties also volunteered their services, especially the University of Texas in Galveston and University of Alabama in Birmingham.

The investigators were all paid faculty members at Baylor Med. None of the doctors received one penny for patient care of David or any other patient in the CRC. It was strictly forbidden by the GCRC program. So the money though a constant struggle, was always there when we needed it. I was appointed to the national GCRC advisory committee in 1975. As such I was able to convey to the Texas Children's CRC that the GCRC intended to continue their support of David no matter how long it took. They never thought that we were spending too much of their money on this project.

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