A Life in a Bubble
Episode 6 | 11m 39sVideo has Closed Captions
The surprising medical legacy of David Vetter, the boy in the bubble.
Newborns today are tested for genetic and immune disorders that might not be apparent at birth. The tests evolved from the treatment of a patient with a rare diagnosis who became known as the boy in the bubble.
A Life in a Bubble
Episode 6 | 11m 39sVideo has Closed Captions
Newborns today are tested for genetic and immune disorders that might not be apparent at birth. The tests evolved from the treatment of a patient with a rare diagnosis who became known as the boy in the bubble.
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Learn Moreabout PBS online sponsorship- The diagnosis of rare illnesses has come a long way.
Just a simple blood test of a pregnant woman can reveal a host of genetic anomalies before a baby is born.
- This testing can be traced in part to a strange and singular medical case from almost 50 years ago, the patient's name was David Vetter.
To the world that became fixated on his remarkable story, he was known as the boy in the bubble.
- [Narrator] Last December, every newborn in the nation began to be screened for a rare genetic disease called severe combined immunodeficiency, or SCID.
It was a groundbreaking moment.
- Babies that are picked up at birth with SCID have a 94% chance of successfully going on and leading a normal life.
- [Narrator] But the achievement might never have been possible were it not for the story of one little boy.
- David was born September 21, 1971.
I heard the first sounds of life and he was placed in a isolator in a bubble that was a few feet from me.
We thought that the immune system was just slow to develop.
There was never any plan to keep David in there, in the bubble indefinitely.
- [Narrator] The sterile bubble was the brainchild of doctors who feared the worst, severe combined immunodeficiency.
A rare genetic defect that had taken the life of David's brother the year before, but it fell short of a cure.
- It was a gradual realization that his immune system was not going to spontaneously function.
So I trusted science would find an answer for us next year, then the next year.
- This three year old boy you see in that picture has spent his entire life in a plastic bubble.
- [News Anchor] To expose him to the air would be to kill him.
His food, clothes and toys have to be sterilized and placed inside the bubble with sterile rubber gloves.
- [Narrator] As the years passed with no solution.
- [News Anchor] Since his birth six years ago, David has lived in a plastic world.
- [Narrator] America tuned in to watch the milestones of his curious life unfold.
- The scientists who sent men to the moon have achieved another first, they have found a way to open up the world of a small Houston boy who has spent his life inside a sterile bubble.
- [News Anchor] That he was excited by his newfound freedom is obvious from the NASA film, David wanted to do everything.
- [Female] I think the best portrayal of his reaction is when he held up his hands, the fascination of seeing his hands in the small gloves for the first time.
- [News Anchor] Now it is possible for him to play catch with his sister and dream of even more.
- [Narrator] The nightly news was just the start.
Soon his story took on a life of it's own.
- [Announcer] John Travolta is the boy in the plastic bubble.
- David was unique and people pay attention to things that are unique.
When he was about nine years old, he looked at me and he said, "Well I'm a star, I don't have to clean my bubble."
And I thought he meant like a star in Heaven, and I said, "Oh yes you are because you light up my life."
he said, "Well not that kinda star, I'm famous."
- [Narrator] But David's predicament brought him more than fame.
- Certain things would filter back about the ethics involved in keeping a boy in this germ-free environment.
- [Interviewer] What about the day he says, "I want out of here," and you can't let him out?
- I'm not sure that the quality of life which has been created for David is going to very long be a desirable one for him.
- To keep a child isolated, unable to touch or feel or smell or enjoy, sounds cruel perhaps.
What did they expect us to do, take David out of the bubble?
Which would've been certain death.
- [Woman] Tell me the letters.
- [David] I.
- [Woman] Okay.
- P. - [Woman] Okay.
- O, Z. I tried to do my best in school with this.
- [Woman] I know you do.
- We all knew that a day would come when a decision would have to be made either in or out, everybody knew that this isolator system, this couldn't continue forever.
- [Narrator] David had grown into an adolescent without a clear road forward, but medical advances were cause for hope.
- They were having success with bone marrow transplant from an unmatched donor.
Everything seemed to come into play.
He would be free, or we would go back to square one.
- At 3:00 a.m., David did receive a bone marrow transplant administered by Dr. Shearer.
- [Announcer] The new bone marrow which comes from his sister could spur his body into developing an immune system.
- [Dr. Shearer] Everything was just fine, his blood pressure stayed good.
- There was nothing different, except New Year's Eve, there was an elevation temperature and the next day it elevated again.
- Today, David has been removed from his bubble for the first time in his life.
But the reason for his freedom is not good news.
- David, the 12 year old boy who lived in a plastic bubble until two weeks ago, is listed in critical condition tonight.
- Unforeseen things happened, and that's what we live with.
- David was always joking, said something to the effect that here we have all of these tubes and all of these tests, and nothing's working and I'm getting tired.
Said, why don't we just pull all these tubes out and let me go home.
- 12 years ago in this country, a very unusual baby was born.
He died last night, two weeks after emerging into a world his body could not tolerate.
- [Narrator] Carol Ann vowed that David's life would not be in vain.
- David's story was repeated before the congress as a way of putting a face and a name to the problem and helping people understand why it's important to fund research.
- [Narrator] Dr. Michael Blaese a gene therapy pioneer, has been studying immune deficiency diseases for more than five decades.
He says that in the years that followed David's death, progress in bone marrow transplantation alone offered most children a virtual cure.
- We know that if transplantation is done sometime in the first three months, that the chances of cure is in the range of 95%.
- [Narrator] But quick diagnosis was key.
- [Male] There's Brandon.
- [Female] Brandon Michael.
- [Nurse] He's one hour old.
- [Male] He's exactly one hour old.
- Brandon looked like a healthy, normal baby at birth.
Brandon's got his pacifier and he's trying to put it back in his mouth.
He was eight weeks old yesterday.
Brandon's almost three months old.
He's just sneezing.
Hi baby.
Until he became about six months of age and came down with what we thought was his first cold.
- [Female] Yesterday Heather had to take Brandon to the doctor because he didn't feel good.
- We had no family history of any kind of serious conditions, so really we were hoping that whatever it was that Brandon had, he was going to be able to fight and get over.
Unfortunately instead of getting better, he got progressively worse.
- [Narrator] Within days she was rushing Brandon to the hospital.
- His fingernails were blue, his lips were blue, it was quite obvious that he was struggling to breathe.
- [Narrator] But for three weeks, doctors couldn't figure out what was wrong with the child.
- It was after the skin biopsy came back that they first told us they thought he had SCID.
And they explained to me a little bit more, we don't put babies in bubbles anymore, but what we do for them to treat this is a bone marrow transplant.
However they said at that point that Brandon was just way too sick, we've done everything that we can for him and unfortunately we're going to have to turn the machines off.
All the family came in and took their turns saying goodbye.
- If you can identify the patient and get them treated, you essentially cure them, almost all of them.
But once they have that infection, that first infection, success rate drops substantially.
It's a problem of rare disease, patients get missed.
- [Narrator] Most pediatricians still couldn't recognize the signs of SCID.
Awareness of the disease had receded along with David Vetter's story, replaced in the public's mind by a image that had only the vaguest connection to the boy, who had once captivated the nation.
- [Bubble Boy] What are you looking at!
Never seen a kid in a bubble before?
(audience laughter) - Course I have, come on.
My cousin's in a bubble.
(audience laughter) - You'll be living in this bubble.
It's clear plastic so the world can see how normal you are (laughing).
- [Narrator] Such portrayals were painful to the parents of immune deficient children, but they had one unexpected upside, publicity.
- That was very hurtful, but our driving focus is newborn screening.
To let the world know that this is a condition that's still taking our baby's lives every day.
- [Narrator] The death of Heather Smith's first child had taught her that early detection was essential.
Forewarned, her second baby was given a landmark bone marrow transplant, while still in the womb.
Taylor is now 24 years old and has just graduated from college.
- And to look at him you'd have no idea that he has a condition called severe combined immune deficiency.
- [Narrator] Today gene therapy is at the forefront of treating the disease.
- [Announcer] Doctors take out the patient's bone marrow and replace their defective gene with a healthy copy then reinfuse the cells back into the patient.
- [Narrator] In 2008, advocates like Heather Smith helped push Wisconsin to begin screening all newborns for severe combined immune deficiency.
In fits and starts, other states followed suit, leading to the realization that this genetic defect was more common than generally thought.
- David's story is still helping people today, 30 years later.
- [Narrator] And not just as a symbol, important medical advances resulted from studying the young boy.
From the discovery of the damaged gene that causes the most common from of SCID, to another revelation.
- The little Houston boy provided a vital, missing link between a common viral infection and the development of cancer.
- [Narrator] The final tragedy of David's life was that the transplant had initially worked, but unbeknownst to doctors, the donor's bone marrow contained remnants of an old virus, which when transferred into David's immune-compromised body, triggered an aggressive cancer.
It was the first time this connection had been observed.
(soft piano music) - [Male] What he gave us was a powerful lesson in many areas of medicine and just in life itself.
David was a very courageous boy.
- [Carol Ann] I always thought at some point, when David left the bubble, that he would be a researcher himself and would help mankind that way.
- Hi mom.
- It turned out that he is helping mankind, but in a different way.
