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The Boy in the Bubble
Online Forum: Day 4

Day 4:
April 13, 2006

Was it really so difficult to get input from David's father? He was not mentioned at all in this documentary. Odd; he is, after all, the boy's father. If he didn't want to comment, why not just state that. The fact that David's father is absent from this documentary is perhaps a story unto itself about the different views of David's parents. A prominent issue; too bad PBS entirely ignored it.
B. L.

Answered by Barak Goodman:
David's father did refuse to participate. I think this had less to do with differing views between the parents than with his own commitment to privacy. David Sr. and Carol Ann were divorced shortly after David's death. I think given all they had been through, few would be surprised at this, and we did not think it needed to be part of the documentary. Maybe we should have mentioned that David's father refused to cooperate; we didn't think many people would wonder and few have -- at least until now.

Thanks for your question.

Answered by John Maggio:
I agree, it would have been interesting to have Mr. Vetter's perspective, but we did not ignore it. David's father did not want to participate in the film. He and Carol Ann divorced after David's death and it has really been Carol Ann that has carried on educating people about SCID and David. It would be speculation to delve into Mr. Vetter's motivations. Carol Ann talked about "big" David and what the two of them wanted out of life, that it was important to them to have a big family, and it was important to Mr. Vetter to have a boy to carry on the family name. I got the impression that Mr. Vetter did hold sway over Carol Ann in many ways, but I also had the impression that it was Carol Ann who was most involved with David's day-to-day care when he was at home. Thanks for watching.

How do you respond to Reverend Lawrence's assertion in the film that David was the first human guinea pig? Was there ethical oversight for the project?
S. S.
Houston, TX

Answered by Dr. Mary Ann South:
Has the Reverend Lawrence forgotten the Holocaust and the human experiments done in the Nazi concentration camps? This was long before David was conceived and it pointed out the desperate need for ethical controls in our clinical experimental work.

The Clinical Research Center was the agency that provided ethical oversight for their own clinical research protocols. Both the human research committee (not called the Institutional Review Board for the Protection of Human Subjects in those days) and the CRC advisory committee had to review and approve each protocol before it could begin. This oversight was particularly stringent in David's case since it was so high profile. The continued funding of the CRC grant to the Texas Children's Hospital depended on a yearly progress report reviewed by the GCRC national advisory committee. The grant renewal involved a site visit that brought together world class clinical investigators to closely scrutinize each approved protocol; a separate one for each project that was being carried out with David. All these helped us stay on track, ethically and scientifically, and provided links to other like-minded physician-scientists throughout the country and indeed the world. They also were effective in spreading information on new discoveries as quickly as possible, much faster than the publications we prepared.

Such matters as informed consent, privacy issues, continuity of care and constancy of purpose were all managed in the CRC. Patient safety was another issue addressed by CRC. They implemented the decision to keep his last name secret. After David became a media sensation, an armed guard was provided when he was in the CRC in case any one really did try to "release" him from his "plastic prison." Fire safety laws required that the isolator be accessible and an evacuation plan was designed. This, of course, involved David's being able to get out of the isolator any time he wanted to even if there was no fire or disaster situation. The truth is he never tried nor did he ask his parents to get him out.

Management of publicity was a big ethical issue, further complicated by the Harris County Medical Society's ban on publication of names or pictures of any of their members (that constituted "unethical advertising" and had to be strenuously avoided). The combined efforts of Baylor College of Medicine, Texas Children's Hospital and the CRC was necessary for oversight of this big job. All in all we felt there were adequate checks and controls on the behavior of all those involved in David's case.

Near the beginning of the American Experience film, there is a composite of my pictures of two SCID babies. One baby is blue and crying; the other is red and unconscious. By coincidence the photos depict the two biggest dangers to David's life and health. The blue baby is David Joseph Vetter III, David's older brother, as he is dying of pneumonia -- a pneumonia caused by a very common germ named Pneumocystis carinii. Only people with highly deficient cellular immunity get sick from this germ. The red baby has what is called graft-vs.-host disease. It is the result of the baby having gotten some unmatched lymphocytes that have become grafted into his body as he does not have the ability to reject them. The engrafted cells, being the very cells whose job it is to reject foreign grafts, then treat the whole baby like a graft and reject his entire body and destroy it. He died two days after this picture was taken and a more miserable death I've never seen. Until you come face-to-face with such horror, you cannot even imagine the "ethical dilemma" that David's parents faced when they were urged to consent to his removal from the isolator system. They knew that the isolator was designed to exclude pneumocystis and that it worked and that when he came out he was likely to become infected immediately. They knew that there was no method at that moment to repair David's immune system without producing graft-vs.-host disease. They knew that his removal from the bubble would be his death warrant -- so they refused. I salute their courage, and David's, in their long successful wait for a suitable method to give him a chance for a cure. In the process of waiting, in isolation in his bubble home, David touched the whole world. Was his life meaningful and worth living? You better believe it was.

Why did David not want to use the space suit more often? Was he afraid to change his view of the world around him?
S. G.
Lafayette, LA

Answered by Carol Ann Vetter Demaret:
NASA had taken the tailor measurements for David and then allowed for a growth spurt because David was supposed to use the suit for a year. All of a sudden David had his growth spurt and the inseam was too short. So the suit was retired. Several months after David's last entry into the suit, David was at home and he said, "Mother, when is NASA going to make me another suit to wear?" I said, "Well, David, I don't know. I think it costs a lot of money to make, so probably they're going to have to wait until they can find more money to do it." He never asked me again about it. He hesitated the first time he went into the suit, understandably so, and I encouraged him, we all encouraged him. NASA had gifted the suit to his parents, so we were ultimately responsible for David while he was in the suit. David never entered the suit alone without NASA and his nurses, there was an entourage of about 15 people each time David went into the suit. And after his hesitation the first time, David enjoyed every minute he spent in the suit. He came home, one particular time, and for the first time saw his home. The bubbles would not turn the corners in our home because the platform was too wide. He was most excited about seeing his sister's bedroom, his sister's playroom, his parents' bedroom, going out in the backyard. But in the documentary it was stated incorrectly, on the Web site, it is correct. David merely outgrew the suit. NASA for whatever reason elected not to construct another. But for every entry into that suit, David thoroughly enjoyed it and was thrilled to be in the suit.

The suit is at the Smithsonian now. I'm looking for the duplicate suit. There is a school not far from where David grew up, David Elementary, and I would like the children to see the suit. I made one attempt to find it, but NASA has no idea what I'm talking about. The reason I'm so proud of the suit, of course, is for all the memories of David in it, but also for the first time in my life, in David's life, I was able to walk hand-in-hand with my son. We walked down the corridors of Texas Children's Hospital hand-in-hand and that meant so much to me. But I have not been able to find it and I would like to gift it to the David Elementary School.

He did hesitate in the beginning. He said, "yes ... no ... yes ... no." David was very trusting of his parents and his physicians and we were all encouraging him. So finally he did come down the chute, feet first, into the suit and he was thrilled. I think the pictures show that. It was the little things that he was excited about that. I remember the flushing of the commode, he was just so amazed at that. One time he went down to the carpenters' department where his platforms were made and his tables were made, he was always fascinated by machines and how they worked.

This question is asked to all three original members of David's team; Dr. Joseph Wilson, Dr. Mary South, Dr. John Montgomery. What was David's reaction when each of you told him of your plans to move away from the area? How did you give him the news, and how did he react?
S. G.
Lafayette, Louisiana

Answered by Joseph Wilson:
When I told David that I was going to Portland, Oregon, it was not the first time that I had informed him that I would not see him for a while. This was not abandonment. I continued to be on the faculty of the Baylor College of Medicine as an adjunct professor and on the protocol of the Clinical Research Center at Texas Children's Hospital for David's case. David was not upset; we had been through this discussion a number of times. His question, as usual, was "When will you be back." I told him that I would be back in three months and that in the meantime, we would be in contact by telephone. It is very important to small children who are dependent on you to tell them as accurately as possible when you will return if you are going to be away from them, even if it is only a day or a week. After leaving, I did make visits three or four times a year to Houston. I found it interesting that when I went to see David, he would resume the conversation or activity that we were having at the end of our last visit. It was important to David's parents also to be reassured that they were not abandoned and we were available to them whenever we could assist them. For example, when David refused to get into the space suit, the hospital staff called me on the telephone so that I could talk to David, which I did. I reassured him that the suit was safe and I encouraged him to give it a try. He finally agreed to do it, but it wasn't a very satisfying experience for him and its use was abandoned after a few excursions.

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