Bursting the Bubble

"Bubble Boy" David Vetter was hardly the happy, well-adjusted child portrayed in the media. Thirteen years after his death, his friend Mary Murphy is fighting to tell his story.

The transplant seemed to go well, and for a few months, doctors dared to hope that David might leave the bubble. But by December, it was clear that something was very wrong. In early February, David was plagued with diarrhea, fever and vomiting so severe that he had to be removed from the bubble to be given intensive treatment. He died 15 days later, on February 22.

It turned out that the screens of Katherine's bone marrow had missed the presence of Epstein-Barr, the virus that produces mononucleosis. An autopsy revealed that David's body was riddled with tumors; he died of Burkitt's lymphoma. According to Dr. Shearer, the information gleaned from David's autopsy led to the discovery that viruses can cause cancer. Besides specific medical advances, David's case also changed the way that doctors approach genetic problems. "What David's story best illustrates is medicine's hopelessness in dealing with symptoms of disease," says Terry Sharrer, the curator of health sciences at the Smithsonian Institution in Washington, D.C. David's space suit and one of his isolators are now part of the Smithsonian's collection.

According to Sharrer, the Bubble Boy's life coincided with the birth of molecular medicine, which is aimed at fixing a genetic fault rather than combating its results. "David's case," he says, "ended a line of medical thinking that went back a thousand years."

During the last 15 days of David's life -- his first days outside a sterile field -- he spent many of his conscious hours watching TV. He was amazed by the inaccuracies in the saturation coverage of his life and imminent death. And he was especially irritated by a reporter who said his space suit had given him mobility.

"Mobility?" David asked Murphy rhetorically. "What mobility?"
One last time, he made her promise that she'd write a factual account of his life and death.

She began the book about eight months later. She wrote in her spare time, snatched from the moments when she wasn't at work or caring for her ailing mother. Along the way, she obtained the written permission of both the Vetters and officials at Texas Children's Hospital and Baylor College of Medicine.

In 1995, Mary Murphy's book seemed on the verge of publication. In its spring catalog, WRS Publishing called it a "captivating inside story" and "provocative question-raiser." But as it turned out, some people close to David would rather not see the questions raised.

In February, Dr. Feigin wrote WRS that he'd been told that portions of the book were drawn from conversations between hospital employees and David or his parents. He warned that such usage might violate Texas laws providing for patients' privacy, and suggested that the publisher review the manuscript carefully.

Roughly a month later, WRS received another letter, this one from David's parents, who had divorced. His father, David Vetter Jr., is now the mayor of Splendora. His mother, Carol Ann Demaret, is married to Kent Demaret, who as a reporter covered the Bubble Boy story for People magazine.

After reading a draft of Murphy's book, Demaret drafted a letter blasting it. Over the course of 28 pages, he complained that the work was "not defensible on any grounds" and amounted "to an assault on a dead child." The letter suggests that Murphy manipulated David and that he would never have asked her to write such a book. It also complains that the words she attributes to David are much different from his way of speaking. "The supposed 'quotes' are not in the true 'voice' or spirit of David," the letter states. "They do, however, sound exactly like Murphy."

It is true that much of what Murphy says and writes about in her book cannot be corroborated, since the people who could confirm or refute her claims refuse to be interviewed. But many of the letter's objections simply do not pass muster. For instance, the family ridicules as a "hallucination" Murphy's contention that David was manipulative -- an observation previously published in a 1977 academic paper in Pediatric Research. Additionally, during his short life it was often reported that David had both an above-average intellect and vocabulary.

David's parents declined to be interviewed for this story. Contacted by phone, David Vetter Jr. said, "I don't have time to talk to you. I don't want to talk with you. Thank you for calling."

Carol Ann Demaret's phone was answered by her husband, who said in a friendly fashion that he doubted that she'd be interviewed. By mail, he later confirmed that.

During his phone conversation with the Press, Demaret described the book as "bad news." Asked about the relationship between Mary Murphy and David, he replied, "She visited him occasionally." Of all the charges leveled against Murphy, the most unlikely one is that she exaggerated her relationship with the boy. Even Team David members who disagree with her conclusions confirm that she and David were close. "In order for David's life to be most meaningful, his parents and we all tried to be upbeat about it even though we knew that things were wrong," said Mary Ann South, one of the original three doctors. "As I recall, [Murphy] picked up on a lot of developmental things about him that nobody wanted to face."

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19 comments
Celia Huerta
Celia Huerta

David was just a child, a human being. He suffered his entire life trapped in a very small plastic bubble. As the numan being he was, he got mentally ill, yet, he remained aware and despite bouts of dispair, he didn't entirely lose hope until the very end. David had to be strong and courageous in a way most humans don't have to be. I am so glad he had Mary Murphy by his side, validating his reality in a way no one else would. It was an extremely sad and lonely existance. First he was treated like an experimental animal while trapped in a bubble; second most Drs, the media and even his parents chose to believe he was ok in a bubble. No one in their right mind trully believes he was a "happy child". Are encarcerated people content to be confined to a small space? Research indicates not. It's horrible for inmates, it's even worse for a little child. It has devastating effects on a child's development. That's humanity 101. I hope David has found freedom wherever he is. I hope he is in a place now where he can thrive, be happy and have a decent existance.

Guest
Guest

Looks like the book has or will become available: Bubbleboybook dot com claims that it will be up by 1/15/12.

realnewz
realnewz

This is the third article I read of this case and it just raises more questions than answers.This is the first I hear of him being donated to science before he was born.How cruel is that?

I think the doctors knew what they were doing before he was born. Because why would they think they would find an instant cure once he was born? That doesnt really make sense and where did he use the washroom?

Since he was put in the bubble 10 seconds after being born how did they know he had the disease? They say there was a 50/50 chance of him being born with it but never get into details with how they knew he had the disease. If he tested positive for the disease why no mention of that?

I think they wanted to study him and his dna.I dont think it was a fluke coincidence that they couldnt find a cure for him. Or at least finding a cure was a boogus excuse to study him.Even some of his bubble contraptions look like a rat experiment/maze.

I find it odd that he would ask about his legal rights and want his friend to write a book about him. I think there is alot more to this story that isnt being told.He may have been the first human clone or a humanoid alien. lolStrange but that would make a little more sense of this tragic story.

This bizarre case reminds me of E.T. and the Truman Show combined.

Maxemillion Candace Cummings
Maxemillion Candace Cummings

These doctors were and are just sick!! if they dared lock my family in a bubble i would have them experience it first!!

Stephan Pickering
Stephan Pickering

Shalom & Erev tov...it is now 2011...the book never appeared...both David and Mary are in Spirit...what happened to the book's manuscript? Surely, with proper legal work, and with knowledge of the parents' participation in a horrific 'experiment' that saw their son's death, the book can be read.STEPHAN PICKERING / Chofetz Chayim ben-Avraham

Molly
Molly

I think the whole story is sad and just wrong. The poor boy was stuck in a bubble his whole life waiting for a cure that ended up being what killed him. I read some other articles about David and one of them said he asked his mother if he could try a Coca Cola before he died, and she said no because he was very sick and dying. He was never able to do and try things that other kids are able to do everyday.RIP David.

Maria
Maria

i think that the only thing mary want is money to publish her book.. know with internet, blogs, web pages, etc you can publish your story everywhere and "make your promess" so is obvious what she really want by telling the story

Allegra
Allegra

Such a tragic story. I feel very sad for the parents, who did what they did believing the doctors, and having faith in a cure, and who ended up denying their child's humanity. I hope to see Murphy's story some day but the litigious climate around this medical misstep makes that unlikely.

Celia
Celia

Heart-breaking story. I watched the documentary and have read several articles about David's life. I wish they would let Mary publish the story. I'm so glad he had her in her life. His reality was denied by the media and his own parents. This well intended but cruel action added to David's tragic experience. That denial of his reality and feelings kept him even more isolated.

denise
denise

its very sad.. pour boy..but i was suprised about the size of the bubble, six feet by two feet by four and a half feet, i dont know how big that is in meters, but the translator telled me dimensions where nobody could stand in it or something. so how big was it really?i really admire this boy & his force to live ..i think nobody could imagine what it means to live a long life in something like that. it must be gruesome ..rip david, now you have your freedom

Rose
Rose

How terrible that the parents and doctors did this to that child. He did not ask to be born so that he could live his life in a bubble. To do this on purpose I find very uncareing.

Angela
Angela

A sad story indeed. My blessings and peace to all the people involved on Davids life. I can only image how much they'll miss him even under such a unique way of living or experiencing the so call life. I would like to contact any of the parties involved in David's life, his parents, sister, doctors or someone who had the opportunity to meet him. Pleased contact me at email: arecurt@yahoo.com

M. Sipiaguine
M. Sipiaguine

This is such a sad story and I hope Mary's book and David's real story is one day published for all to read who cares about a glimpse into the truth. While David's case may have allowed the doctors to find potential cures for his condition and led to the discovery that viruses can cause cancer, it is obvious they were more interested in using him as a guinea pig, and I'm surprised that no one has been prosecuted for such a lapse in ethics. What century are we living in?

Richardstephens99
Richardstephens99

Since he was put in the bubble 10 seconds after being born how did they know he had the disease? because his first brother died from the disease and his mother carried a defective gene that cause scid and doctors told his parents that if they had any more male children they would have a 50% percent chance that they would have scid so the parent and doctor took precautions with the vetter's second son they put him in a bubble after he was born to protect him if he had scid a week later test proved he did have scid They say there was a 50/50 chance of him being born with it but never get into details with how they knew he had the disease. If he tested positive for the disease why no mention of that?

Shannonwoods31
Shannonwoods31

I agree 100%, this childs life was planned before he was born, his parents was tricked and were convinced to have another baby for tests, research and experiments, its just so sickening

Bink
Bink

Ummmm. Nope. The threatened lawsuit would apply to a hardcover book, a paperback book, an audio book, a text file, etc. Are you so ignorant you think posting on the internet is somehow a "loophole" to alleged HIPAA violations? And that it "proves" that the author, at 70 years old, is now only out for money? Thank goodness the internet has come about, now anyone can libel people with impunity.

NkA1
NkA1

@M. Sipiaguine The manuscript of her book is online at bubbleboybook.com

NkA1
NkA1

@Bink I believe that the author Mary Murphy is now deceased and the manuscript to her book has been posted online.

 
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