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.

He developed facial tics, and would nervously rub the bridge of his nose until it was raw. He was frightened of change. And as he began to enter puberty, Murphy says, he'd occasionally engage in open masturbation, embarrassing his nurses and teachers.

By then, she was seeing less of David, who lived almost full-time with his family in Conroe. She occasionally visited him there, but most times, they talked by phone.

Though David grew to enjoy being at home in Conroe, he was at first reluctant to leave the hospital for an extended period of time. "How can I tell my mother that I don't want to live at home?" he asked Murphy a few months before his tenth birthday. "I love my parents very much, but I can't tolerate the thought of six months." As if to prove he meant what he said, he paced, threw himself on the floor of his bubble, pounded his fists and screamed and cursed -- all so violently that Murphy was frightened for him.

She tried to comfort him. "You should be with your parents and your school friends," she told him. "A hospital is no place for a boy to grow up."

Still, David was inconsolable. "Why didn't they do something to me before I was old enough to care?" he asked. "When I was three, I wouldn't have cared. When all this mess started, didn't they ever think about or realize that they were dealing with my life? They made decisions without ever thinking about anything except what they wanted to do, not about all this crap that I'm in.

"I am a mouse surrounded by ten cats, and there are no dogs to chase the cats away .... Where do you suppose I could get some legal advice?"

Over the years, the composition of David's medical team changed. One by one, the three original doctors moved to new jobs in different cities; eventually Baylor's Dr. Ralph Feigin and Dr. William Shearer headed the team. (Both declined to be interviewed by the Press.) It was Feigin, Murphy said, who encouraged her to take the meticulous notes from which she constructed her book. By the time David was nine -- three years into Feigin's stay at Baylor -- Feigin pushed to resolve the boy's situation, which he described as "intolerable for everyone."

Since David's birth, his doctors had hoped that his immune deficiency could be corrected with a bone marrow transplant. But an exhaustive search failed to turn up a perfectly matched donor, and research had not progressed to the point that a less-than-perfect match might work.

Murphy recounted a meeting in June 1980, when Feigin conceded that a cure for David was still years away. Nevertheless, the doctor was concerned about "a deterioration in the boy's mental status," as well as the possibility that federal funding for the project would eventually dry up. (Conservatively estimated, the cost of keeping David alive eventually came to somewhere around $1.3 million.)

According to Murphy, Feigin and Shearer attempted to convince the Vetters to remove David from the bubble and place him on a regime of gamma globulin and antibiotics. Basically, the doctors were hoping that David's body -- like those of the twins in Europe -- had miraculously begun to develop an immune system.

Murphy believed the plan was a way to bring David out of the bubble and let him die. Despite her affection for the boy, she thought it was the right thing to do. The Vetters, though, rejected the idea after consulting with the original trio of doctors.

Four years later, even those doctors agreed that something had to be done. Researchers in Boston had made advances in transplanting unmatched bone marrow. Montgomery and the other two original doctors convinced the Vetters that an unmatched bone marrow transplant was a risk worth taking.

The transplant was set for October 21, 1983, precisely a month after David's 12th birthday. The boy told Murphy that he didn't believe the transplant would work, and he seemed ambivalent about his prospects. But he seemed less frightened of death than of the alternative: life outside the bubble. "He was actually afraid that it might work," said Murphy, "and that he wouldn't be able to adjust when he came out."

Against David's wishes, Baylor hired a camera crew to record the procedure. David wanted Murphy to be at his side, and even advised her on what to wear to the transplant, so that she'd look good in the newspaper. His first choice was turquoise, but he settled for a red blouse, a red velvet vest and a red print skirt.

David's older sister, Katherine, donated the marrow, which was treated by doctors in Boston and flown to Houston to be introduced into David's system. In the wee hours of that Friday morning, Texas Children's Hospital was informed that the plane had arrived at the airport. Less than an hour later, Dr. Shearer walked into David's room with a white Styrofoam ice chest. Murphy thought that the precious fluid sloshing inside a plastic bag looked like pink lemonade. The procedure was more like a blood transfusion than an operation. Through the intravenous lines that ran into the bubble, Katherine's bone marrow slowly dripped into David's system.

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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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