The Case of the Bubble Boy

Maybe doctors and parents don't always have our best interests in mind

Imagine if this were your home. CREDIT: BROKENCHOPSTICK
By | Posted July 23, 2006
Posted in: Health Blog
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Before he herded sheep, shared a tent, saddled up, and ultimately fell in love on Brokeback Mountain, Jake Gyllenhaal was just a teenager in a bubble. Or at least he played one in the movies.

And remember when George Costanza ripped an obnoxious bubble boy’s protective casing on Seinfeld?

These references are recognizable and humorous, but the true-life story and ethical questions surrounding the case of David Vetter―the boy who actually lived inside a bubble―are not widely known, and not at all funny. I knew nothing about this horrifying tale until I attended a talk amongst a roomful of doctors, most of whom seemed to be as shocked as I was by the lapse of ethics in this case.

This is the tale of a medical system that sometimes ignores the emotional needs of patients with rare diseases and instead treats them as “clinical gold mines,” according to James H. Jones, a historian who is working on a book about the Vetter case.

“David would live all but the last few weeks of his life without having any human contact,” said Jones, who recently spoke about the case at the New York Academy of Medicine. “He would never smell his mother’s hair. He would never know the warmth of her touch.”

Kept alive for almost 13 years by experimental research, David lived with an incurable disease for his father, who desperately wanted a son, and for the scientists who salivated at the thought of studying him. He didn’t live for himself.

But there are plenty of freakish and disturbing twists to come…

David’s disease was more of a sure thing than a surprise. His parents and pediatricians had dealt with the same disease with David’s deceased older brother, the first David Vetter, born just one year prior to David’s birth. The Vetters had already lost one son, but they took their chances with another, as optimistic doctors urged them on. And yes, they named them both David. CREEPY!

When David, the second, was born in 1971, there was no cure for his illness, known as severe combined immunodeficiency (SCID), a disorder that left him very susceptible to common infections and airborne germs.

But what is SCID exactly?

Well, newborns are initially protected by the immunity transferred to them by their mothers after birth. But within the first few months of life, their own immune systems must develop and become responsible for fighting off infections. Those born with SCID lack lymphocytes, the specialized white blood cells that the body uses to fight off infections. Therefore, they can get sick and die from ailments most people wouldn’t even sneeze at.

Today, the treatment options for children with SCID have improved. Gene therapy and bone marrow transplants have been fairly successful in bettering the lives of some babies and allowing them to live longer.

But David’s problems only multiplied inside the bubble. By the time he was nine, a team of psychiatrists agreed that David was borderline psychotic. The flawed ethics of his parents and doctors, the people we trust to have our best interests in mind, hurt rather than helped him throughout his life.

When David was finally removed from the bubble for a bone marrow transplant in 1984, the procedure was still unrefined and “experimental as hell,” said Jones. But it was a decision that needed to be made, and should have been made long ago.

Like a curse that medicine had no chance of reversing, David’s story soon turned more tragic. He didn’t survive for more than a few weeks outside of “the bubble.” Tumors emerged throughout his body after the transplant. David’s sister, who donated the bone marrow for the transplant, had Epstein-Barr virus, one of the most common viruses in the world and a member of the herpes family. Yet David’s weak immune system couldn’t beat the virus. He never had a chance to live outside the bubble.

Jones, who has also explored the ethical issues in the Tuskegee Syphilis Experiment, a 40-year government study on the effects of untreated syphilis in poor black men, will, in his next book, scrutinize the roles of all doctors and family members who kept alive a boy who would never have a hope of survival.

This talk left me questioning why doctors choose the patients they do and whether medical ethics were ever considered in the David Vetter case.

More importantly, how many other unpublicized cases of faulty medical ethics are out there? And how often is medicine a selfish rather than humane endeavor?

Posted in: Health Blog

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  1. Very interesting article, more people need to be aware of this issue. You help make a complex scientific issue easy for everyone to understand. Thanks for bringing this serious ethical problem to people’s attention!

    Sofia, July 24, 2006 at 9:23 pm
  2. Wow, this article really opened my eyes to medical ethics issues I wouldnt normally have considered. Thanks for the helpful link to the Tuskegee Syphillis Experiment (appalling!!). All very interesting…

    Olga, July 24, 2006 at 10:08 pm
  3. Point well taken. This insightufl article clearly shows that there comes a time where, on any balance of decent morality, ethical considerations must surely outweigh scientific curiosity.

    Dr. Spektor of LIJ Medical Center, July 25, 2006 at 12:00 am
  4. Interesting subject, yet I find the article incomplete and somewhat “preachy” to say the least. On the one hand, the author implies that the medical establishment encouraged the parents to have another “David” just so they could experiment, yet to balance this argument, shouldn’t you give some detail regarding the sister, were they “encouraged” to do it again, why doesn’t she have the same disease or is she adopted? What odds did the parents face regarding the possibility they would birth another child with the same disorder? Fifty percent, seventy percent, ninety-nine percent? I think the reader should be told. Exactly where is the “flawed ethics” in this case? The disease is obviously horrible, David had to live in a bubble, ends up diagnosed as psychotic, not a surprise given the environment, but again there seems to be a large gaping hole in the story where the author seems to jump to conclusions without explaining why to the reader. Am I to jump along with you? I’d rather have more details, like what treatment options, if any, existed during this time. The bubble is not good, but maybe they had nothing better. And what should the medical team and doctors have done differently? Let the child die? I think you started out with a compelling topic but I can’t follow you down the path that led you to medical incompetence and flawed parental thinking without some plausible explanations and hard facts.

    Daryl, August 4, 2006 at 2:35 pm
  5. Hi Daryl,
    I’m glad you brought this up. I think it’s very important to point out that this is part of the scienceline blog, not a regular article. We keep the blog in a different section than the articles, because blog entries are often opinionated or personal, and written in a tone that wouldn’t be acceptable for strict news reporting.

    That being said, you raise some excellent questions that I’ll do my best to answer.

    David had X-linked SCID, which mainly affects males because they only have one X chromosome. In order for a female to get X-linked SCID, both her parents must be carriers, since females inherit one X chromosome from each parent. David’s mother was a carrier of this rare genetic disease but his father was not, according to a film about David Vetter, which James H. Jones was a part of. Therefore Katherine, the Vetter’s first child, was not born with SCID. But because David’s mom was a carrier and all sons inherit one X chromosome from their mom, both Davids had a 50-50 chance of getting the disease.

    I think that the lapse in medical ethics occurred when doctors supported and maybe even encouraged the Vetters to become pregnant with another child, promising that they could keep the child germ free until they performed a life-saving bone marrow transplant. In 1970, when the first David Vetter was born, most newborns with SCID did not make it past their first birthday, and bone marrow transplant procedures were in their infancy. One of David’s doctors, however, was pioneering the use of an isolator to keep a SCID newborn healthy.

    In addition, in order for a bone marrow transplant to successfully cure the second David, a nearly perfect match was necessary. Although doctors sometimes need to take risks in order to further knowledge, in my opinion David’s doctors’ enthusiasm blinded them to the medical realities of the day. After David’s death, his doctors clearly said that they never sufficiently considered the “what ifs,” including the difficulty of finding a compatible bone marrow donor.

    Furthermore, David was falsely characterized as a happy child living in a bubble by his doctors and the media. Doctors learned a lot about SCID while studying David Vetter, but David and his family only deteriorated. There are many more details to this story, which is perhaps why a short blog entry does not satisfy your curiosity—if you’d like to learn more, I recommend reading Jones’s book when it is published.

    I hope this helped clarify my position on this case. Please comment again if you have any more questions, and thank you for reading!

    –Sabina Borza

    Sabina, August 9, 2006 at 11:31 am
  6. Hello Sabina,
    First of all let me apologize for my own ignorance, I mistakenly read your blog as an article which led me to my unfounded conclusions. Secondly, thank you for not taking me to task over my assertions, very mature on your part, and more importantly thank you for answering many of my questions. I will look forward to reading more about this story and I would encourage you to write an article or essay on the topic to help enlighten more people on the subject. For what its worth, I am very impressed with your professionalism and I look forward to reading more of your work. I enjoy the chance to learn through websites such as this one, keep up the good work.
    Daryl

    Daryl, August 9, 2006 at 7:53 pm
  7. lol
    Sabina: “owned, kthx.”
    Daryl: “Im a noob”

    somedude, August 30, 2006 at 11:09 pm
  8. Ms. Borza,
    I am the mother of a SCID baby saved by a stem cell transplant. In reading your blog, I am concerned that you do not have a full picture of this family’s story.
    I undertsand the inclination to view the actions of those involved as self centered, however, I challenge you to consider that there were no good options back then; this was a truly crucial treatment for this child, and yes, he would have died.
    Consider this- as a parent, I can tell you from experience most do not have- you will do anything, ANYTHING, to save your child’s life. I would have gladly sacrificed my own life for that of my son’s. And my experience with so very many physicians of varying specialties is that they have incredible empathy for the child and the family. They feel the desperation of the parent, and truly, truly want to help. All of us, the doctors and my husband and myself, had to make choices about the best way to protect my son while we waited for his stem cell transplant to engraft. They were worth it.
    My son is healthy now overall. He is HAPPY, and loved, and loving. And yes, living in severe isolation for 7 months(though not a plastic bubble, but confined to his hospital room) left areas of sensory processing difficulties. We continue to work on these through therapy, with great success.
    My point is, if they hadn’t protected him while the transplant was engrafting, my son would have died. He almost did die, on numerous occassions. As his mother, I knew then and I know now that I could handle the separation from our family, the isolation of being confined to his room, because I had hope that the transplant would work. I believe that Mrs. Vetter had that same hope, and I believe her medical professionals did as well.
    So, please remember that Mrs. Vetter had a chance of having a perfectly normal son, but wasn’t so lucky, and when faced with losing yet another son, took the only help the medical community could offer her. Please consider that Mrs. Vetter did the best she could for her son, that his doctors did the best they could. Certainly please remember that the alternative was for her to bury another child. Honestly, from my position with my son, though I could handle anything else we had to do to help him, I knew, and still know, that I could not survive his death.
    The answer to your thoughts is this— the answer will be different for different people as to the best way to proceed in cases like these. And not you or I have walked in the shoes of these people. Each case must be dealt with individually. And yes, sometimes what medicine can offer to help isn’t perfect, but is the best option they have available. (Anyone who has ever taken chemo for cancer, etc. can relate- just look at what those toxic chemicals due to their bodies, all of the extra side effects ranging from humiliating, to painful, uncomfortable and terrifying).
    This child, David, was beautiful, and I am so thankful for him. He did not die in vain. His life, his treatment, and his death directly contributed to the success of so many, including my son’s transplant.
    Last piece of info to chew on- I was adopted at birth and had no way to know of the genetic mutation that would affect my son. Even so, approximately one third are spontaneous mutations anyway. My position is that anyone at any time can have a child with rare life threatening disease. And no one can decide the “right” or “wrong” path except the parent of that child.
    Thank you,
    Susan Ritchie,
    mother of Griffin Ritchie- a success story thanks to Dr. Rebecca Buckley of Duke Medical Center and too many others to list here.

    Susan Ritchie, October 17, 2006 at 1:18 am
  9. Thank you so much for sharing your story Susan, and letting us hear what you went through. You are certainly right that people would make different decisions in such complicated circumstances.

    It is wonderful that your son was saved by a stem cell transplant. I wish you and your family all the best!

    Sabina, October 18, 2006 at 1:19 pm
  10. i loved this article it made me like go like oh em geee! haha!well thanks for the update. im doing a project on this and it gave me so much like information! well thanks again

    kacki, March 6, 2007 at 7:24 pm
  11. This really opened my eyes. I love wolves!!!!!

    wolf, May 24, 2007 at 4:56 pm
  12. It is so sad about David’s death, but this whole article made me open my eyes to possibilities.Thank you for this information.

    Anaisel, March 14, 2008 at 11:17 pm
  13. I saw a documentary on this today and was shocked by how the three doctors involved in this case did not stop to consider the ‘what ifs’ of their ‘experiment’ because they were so buoyed up by unfounded optimism. I was even more disturbed that they still staunchly defended their actions even today and would have ‘done it again’.
    David may not have died in vain (from a scientific point of view), but to him it may not have been a life worth living at all. It was heartbreaking to see him struggle to come to terms with his continued imprisonment. Susan, I challenge you to imagine what it would have been like for David, who lived in a constant state of hopelessness for 13 years of his unhappy life. Many scientfic experiments may be carried out for the ‘greater good’ but that does not mean that we should neglect to consider the suffering that can be experienced by one human being. A noble end does not always justify the means, and in this instance it is simply tragic how this poor child paid such a high price to further our store of scientific knowledge.

    Lu, June 12, 2009 at 1:27 am
  14. I must thankyou for this site, it has given me the chance to have an opinion and hear the views of others.. this is a sad story. maybe it served some good for future medical knowledge and many SCID sufferers have benefited greatly from it.. I

    ju, January 26, 2010 at 11:22 am
  15. Susan. being a parent does not automatically qualify you as a “decider of all that is right”. sometimes parents get it wrong. I believe the vetters `got it wrong` I understand your bias (I`m glad you have a healthy son now)Davids isolation turned him into a psychotic, lonely and sad little boy and this cannot be defended.
    I have read all there is to read on this story and it is interesting but sad.
    if Davids plight has saved so many then ok. now that its happened we should reep the good from it. The sad truth is, it should never have been allowed to happen and a cure should have been discovered in a way that would not be at the sacrifice of a childs sanity and wellbeing..

    ell, January 26, 2010 at 12:09 pm
  16. I’ve been reading about David this evening and watching material about him on YouTube. This article hits the nail on the head. These doctors were arrogant fools and the parents were wacky. The boy led a miserable, tortured existence because the docs wanted a guinea pig. That smacks of Josef Mengele.

    Bob, December 7, 2015 at 2:51 am
  17. Here’s a link to another good article about this tragic case:

    http://www.houstonpress.com/news/bursting-the-bubble-6573830

    Bob, December 7, 2015 at 3:56 am
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