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The Boy in the Bubble
Online Forum: Day 2

Day 2:
April 11, 2006

What ever happened to David's sister? Her marrow was unable to save her brother, so how did this affect her? Perhaps I missed any mention in the show about her father, how involved was he?
Christie Harrigan
Urbana, OH

Answered by James Jones:
David's sister has elected to maintain her privacy with regard to David's story, although photographs of her and information regarding her have been published from time to time in numerous newspaper and magazine articles about her brother. Happily, she is not a carrier of SCID. Today she is married and has children of her own.

David Vetter Jr., David's father, also has chosen not to grant interviews. He and David's mother divorced after David died, and he later remarried, as did David's mother.

I am currently student attending ENMU studying biology, with an increasing interest in medical research. I have two questions, first what tests were performed on Katharine's bone marrow to determine if her bone marrow was not contaminated? And, the second question is, how many more children were placed in isolation chambers after David was born?
Ricardo Hernandez
Portales, NM

Answered by Joseph Wilson:
Unfortunately, I can not answer your first question completely because I was not part of the team that prepared Katharine's bone marrow or the team that administered it to David. As far as I know, Katharine was given a thorough examination before her bone marrow was taken, including hematological tests for evidence of infection. She had a very low titer for antibodies against the E-B virus (the one that causes infectious mononucleosis) which is indicative of a previous infection, not uncommon among teenagers. There was no evidence that she was currently infectious. Other than that, she was judged to be a safe donor of marrow.

Regarding your second question, I recall that in the years after David's birth, we placed only three or four babies with SCID in germ free isolators. None had been born germ free and were already infected when we saw them. All died shortly after isolation in spite of vigorous efforts with antibiotics and other means to eliminate the microorganisms that had already infected them.

Good luck with your studies and best wishes for a successful career in medical research.

It was so unfortunate that the bone marrow of David's sister ultimately caused his death. Why not include her statements, feelings, reactions, etc.? Why were these topics not addressed in the program? She must have been devastated?

Answered by John Maggio:
We had heard from some that David's sister Katharine was indeed devastated after learning that her bone marrow held a long dormant virus that led to David's complications but we chose not to use the story out of respect for her privacy. She chose not to participate in the film and to add this story at the end felt exploitative so we left it out. Thanks for watching...

I want to thank PBS for airing this documentary. I have a primary immune deficiency disease (PIDD), called "selective antipolysaccharide antibody deficiency syndrome," and I take a daily antibiotic to prevent infections (I also am eligible for IVIG, a plasma-based product). My physical condition is not as extreme is that of children born with SCID, but germs present a threat to me and to the 50,000-plus patients nationwide with some type of diagnosis of a primary immune deficiency disease. My question is -- how do we increase the chances that a person with a PIDD receives a timely and accurate diagnosis, given the statistic that there is an average 9.2-year delay in diagnosis? What can our patient community do to stimulate interest in this rare disease so that front-line doctors are better informed of when and where to refer, given a set of symptoms, and of what diagnostic tests are necessary? What is the likelihood that the United States will routinely screen newborns for SCID? Why, after the media attention on the "Boy in the Bubble" some 30 years ago, are we so far from helping so many children and adults with these rare disorders? Thank you so much for your time and interest.
Linda Keegan
Madison, WI

Answered by Carol Ann Vetter Demaret:
I have stayed close to the Immune Deficiency Foundation and the community of families dealing with these diseases. Just last week I went up to Washington, D.C., for Immune Deficiency Foundation Day on Capitol Hill. Dr. Rebecca Buckley from Duke University Medical Center and I met members of the house and senate to ask them to consider a mandate for newborn screening for SCID. We are hoping for a pilot program in just a few states to begin screening.

When David was a young boy I realized that early diagnosis ... what a wonderful thing it would be. The disease is easily identified in the placenta because of the absence of T-cells. It can also be included in the heel stick. If SCID is diagnosed within the first months of life it can be treated with a bone marrow transplant from an unmatched donor, either from a mother or a sister. The children are cured and go on to have long and healthy lives.

This is very important to me. Do you know that it is still true as it was in 1970 that in many cases a family has to lose a son in order to find out that they have SCID? I had to lose David Joseph, and that was why they suspected that a son born would have a 50/50 chance. That was why preparations were made for David Philip's birth.

You know, they always said that the disease was rare, but I always felt that it was under diagnosed. The babies always died of pneumonia and that was what was on the death certificate, but it was immune deficiency. The doctors would be treating the symptoms with antibiotics and the child would not be getting better. It is so important that the interest in SCID and other primary immune deficiencies is maintained.

Thank you for asking about such an important topic.

Was there no possible way for David to have come in contact with another human being? To be even more exact, does the human body naturally produce germs that would have been harmful to David? If it were my son, I would have been willing to go through whatever process it took to make sure I was as sterile as possible to visit him. Even if it took a month of preparation and I could only hold him for one hour. To never know human touch seems a fate too cruel to comprehend.
Marc Dyson
Los Angeles, CA

Answered by Dr. Mary Ann South:
Every child we ever saw with SCID was put into isolation immediately. This system allowed visual and auditory contact which was magnificent. But it did not allow for touch. We could joke and be acquainted and in that sense it was better than any other isolation system that we had available at that time. Carol Ann described how the other system would work out when she was describing her cesarian section and said, "All I could see was eyes." I came across a report of a child who was in the other kind of system, using gloves and masks. He did not learn to talk, and they thought this was because he couldn't see anyone's mouth, because the masks. So this system of Dr. Wilson's which he had used many times was the most wonderful thing to happen in the isolation systems of the time. The only thing that he couldn't do was touch; neither could the other children because they had to wear gloves.

David did not remain germ free. He had repeated contaminations, all with organisms that have never been reported to cause disease in SCID. The goal of the isolator system was to prevent Pneumocystis carinii infection which was fatal for his brother and which the great majority of all our SCID patients had. We did not know how this infection was transmitted. It seemed to be an organism that was around everywhere. So it was the system of air filtration that was responsible for the success in preventing this infection in David.

Now we have the development of technology of the laminar flow bench, which is highly practical for short-term isolations. And since we now have methods for doing unmatched bone marrow transplants in different immune deficiencies and in leukemia and many other diseases, without killing the recipients with graft vs. host disease, we don't have to worry about the long-term consequences of the isolation technology. Today we would not need to have a boy in the bubble.

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