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.

As the "Bubble Boy," David Vetter was famous across the U.S. Newspapers, TV shows and magazines portrayed him as a happy, well-adjusted child who struggled cheerfully against the immune deficiency that condemned him to a life inside a plastic bubble.

But according to a person David called his best friend, the boy wasn't struggling cheerfully. In 1978, although he was not quite eight years old, David had realized his life would be lonely, dull and short. His helplessness enraged him. Before he was born, his body had been donated to science.

"Why am I so angry all the time?" he asked psychologist Mary Ada Murphy one summer evening. As he sat in his plastic isolation chamber on the third floor of Texas Children's Hospital, he could see Fannin Street from the room's window. But he couldn't touch that outside world, or participate in it.

"Whatever I do depends on what somebody else decides I do," he said. "Why school? Why did you make me learn to read? What good will it do? I won't ever be able to do anything anyway. So why? You tell me why."

"I can't say why," replied Murphy. Since David was three, she'd spent countless hours of her personal time with him.

David was angry, and he worried that he was going crazy. Murphy explained to him that anger was a natural reaction to his situation. As usual, she tried to help him cope with an unbearable situation -- a life much different than the one portrayed in the media.

Years later, Murphy said, David asked her to set the record straight, to write a realistic account of his life. In 1995, she planned to publish just such a book: Was It Worth It? The True Story of David the Bubble Boy. But shortly before her book was to be released, David's parents and Baylor College of Medicine officials sent strongly worded letters to the publishing company -- WRS, a small outfit in Waco -- withdrawing the written permission they'd given Murphy to write about David, questioning her facts and hinting at a lawsuit. WRS backed down, and the book never appeared.

As told by Murphy, David's story is not of triumph over adversity, but of the human cost of medicine's headlong rush toward the new. Even 13 years after his death -- when the ethical debate has moved on to cloning and genetic screening -- his story still serves as a cautionary tale.

And it continues to divide the opinions of people who cared for him. One member of the group that treated David asked not to be quoted by name for fear that Mary Murphy's enemies would retaliate. "It is important for you to understand that there is a powerful hierarchy at Texas Children's Hospital," said the former hospital employee. "And they are very angry at Mary. And they do not want to be reminded in any way, shape or form that this may have been a bad decision."

In 1970, Carol Ann and David Vetter Jr. had their first son -- also named David Joseph Vetter. Six months later, the baby died of Severe Combined Immune Deficiency Syndrome. He'd been born with a defect in his thymus, a ductless glandlike structure crucial to developing disease resistance. He was at the mercy of any passing germ.

A trio of doctors from Baylor College of Medicine told the Vetters that the defect might have been caused by a mutant gene. If so, the probability that another of their children would bear the disease was 10,000 to 1. But the doctors also explained that the defect might be carried on one of the mother's X chromosomes. If that was the case, and the Vetters had another son, the odds were 50-50 that he, too, would be afflicted by SCIDS.

The doctors -- John Montgomery, Mary Ann South and Raphael Wilson -- told the Vetters that should they choose to have another child, and should that child also have SCIDS, the newborn could be placed in an almost completely sterile isolator that would protect him from disease until a cure was found -- which, the doctors thought, was only a matter of time. The project would be financed with federal research grants.

The Vetters were predisposed to the doctors' plan: They were anxious to have another child, especially a son to carry on the family name. As Catholics, they may have been especially swayed by Dr. Wilson, a scientist who studied germ-free environments and was also a brother in the Order of the Holy Cross. In Europe, Wilson had been involved in a similar project: Two retarded twins had been successfully treated in sterile isolation. Remarkably, the twins' immune systems developed to the point that they could be removed from their isolators before they turned three.

There was little discussion -- and certainly no public discussion -- of what would happen if no cure for SCIDS appeared soon, or of how long a child could or should be kept in such isolation. The medical technology existed. The ethical questions would come later.

As was later reported in People magazine, the Vetters' second David Joseph -- the one who would become famous -- was delivered by a cesarean section on September 21, 1971. The room at St. Luke's Episcopal Hospital had been cleaned five times in an attempt to make it as germ-free as possible. No more than ten seconds after David was removed from Carol Ann's womb, he was placed inside the sterile plastic isolator that would be his home.

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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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