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TV, Documentary American.Experience S18E10 The.Boy in the Bubble 2006
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01:09A bubble boy?
01:10Yes, a bubble boy!
01:12What's a bubble boy?
01:14He lives in a bubble!
01:16For decades, his story has echoed through the popular culture.
01:21Why are you in that bubble, boy?
01:23I was born without any immunities.
01:26His real name was David Philip Vetter.
01:29But the public knew him only as David, the boy in the bubble.
01:33Can you clean your ears?
01:35Can I clean?
01:35Yes, stick your finger in.
01:37The water's right.
01:38Born without a working immune system, he lived his entire life isolated in a sterile
01:43plastic chamber.
01:45There's a very special little boy here.
01:47One who is waiting to leave the hospital for good and go outside.
01:50To many, David's case seemed a triumph of technology over an incurable disease.
01:57To others, it was a bizarre experiment, a symbol of medical hubris.
02:04It is amazing that we can do this, but perhaps we are overstepping the bounds of our knowledge
02:12when we try to conduct experiments that are so risky, so perilous.
02:17Is it really the desire to cure and to help and to save a child?
02:24Or is it pride and egotism?
02:30Incredible advances in medical technology are based on optimism.
02:35Sometimes it's warranted and sometimes it's not.
02:38But you don't always know the answer to that until way down the road.
02:43If you take care of the patient better by doing nothing, you should do nothing.
02:49But if there is even a remote chance of success, for goodness sake, take it.
03:27On September 21st, 1971, a suite of operating rooms in Houston's St. Luke's Hospital
03:34was prepped for a delivery by cesarean section.
03:39The procedure was to take place under totally germ-free conditions,
03:43one of the first such operations ever attempted in the United States.
03:49Walls were triple scrubbed, windows sealed, and all nonessential equipment removed from the room.
03:57The patient was Carol Ann Vetter, a 28-year-old housewife from Houston,
04:03and a carrier of a rare genetic disease that could leave her new baby without a functioning immune system.
04:11Doctors knew that they would have to deliver the child without exposing him to a single germ.
04:20I was wheeled into the delivery room.
04:24Everyone was standing at attention.
04:26Everything was quiet.
04:29There was no conversation.
04:30All I could see were eyes, you know, just eyes peering at me.
04:36Words won't be spoken.
04:38Instead, a series of eye signals will trigger this well-prepared team to make the delivery.
04:45The movements, okay, will be kept to an absolute minimum to let every particle of dust settle.
04:55The delivery team planned to place the newborn immediately into a sterile plastic enclosure called an isolator.
05:03The isolator was placed to my left, right, within a few inches of where I was laying.
05:10I knew it was time.
05:13Sure enough, he came out screaming.
05:16He was the healthiest kid I've ever seen born.
05:19He was exposed to the air in the operating room for probably no more than 20 or 30 seconds at
05:27the very most.
05:29Carol Ann requested that her newborn be baptized.
05:33Lead doctor Rafael Wilson, also a Catholic monk, performed the ceremony with sterile holy water.
05:40I said, well, what name do you want me to give the child?
05:45And she said, David Philip.
05:48I said, I baptize you, David Philip, in the name of the Father, and of the Son, and of the
05:55Holy Spirit.
06:05In the autumn of 1970, immunologist Rafael Wilson arrived at Texas Children's Hospital in Houston.
06:15Dr. Wilson had a bold new idea for how to treat one of the most baffling diseases facing pediatric immunology.
06:23The disease, Severe Combined Immune Deficiency, or SCID, is a rare genetic ailment
06:30that leaves newborns defenseless against even the most common germs.
06:36In 1970, most SCID infants did not live past their first year.
06:41By the time they were diagnosed, their bodies were so riddled with infection that nothing could be done to save
06:49them.
06:49There was just nothing that worked.
06:53And it was just so disheartening, one after another after another.
07:00I'm an old athlete, and that was an opponent who had defeated me without giving me much of a chance
07:10to fight back.
07:13Dr. Wilson, however, believed he had discovered a way to buy time against the onset of infection in SCID infants.
07:22His idea was to create a sterile plastic bubble, like a second womb, into which SCID babies could be placed
07:30at birth and kept germ-free.
07:32He was certain that if SCID children could be isolated, keeping the child physically free of germs,
07:42given time, there would be a way to jump-start their immune systems before they became damaged by infections.
07:49Once he had a SCID baby safely isolated, Wilson planned to repair the infant's immune system with a bone marrow
07:56transplant,
07:56as he had already done with immune-deficient mice.
08:01Two years before he arrived in Houston, Wilson had isolated his first human subjects,
08:07two-month-old German twins diagnosed with SCID.
08:12But before he could perform a bone marrow transplant, the twins' immune systems suddenly began working,
08:18and they were released from isolation.
08:22The experience of the German twins had been encouraging but inconclusive.
08:27What Wilson needed was a baby born into the bubble.
08:35At the same time as Wilson arrived at Texas Children's, a young couple named Carol Ann and David Vedder
08:42were undergoing genetic counseling at the hospital.
08:46The Vedders had a daughter, but had lost their first son to SCID when he was just seven months old.
08:52Now they sought advice about whether to risk having another child.
08:58In the counseling sessions, doctors Jack Montgomery and Marianne South laid out the odds facing the young couple.
09:06SCID only affects male children.
09:09If the Vedders had another girl, she would be fine.
09:12But if they had a boy, he would have a 50-50 chance of developing the disease.
09:19Children were very essential to our hope and to our dream of the future.
09:25We wanted to have children right away.
09:27We wanted to have as many as God would send us.
09:31Eager to help the Vedders, Dr. Wilson joined the counseling sessions.
09:37Told of Wilson's research, the Vedders looked to him for reassurance.
09:42They asked, well, if, you know, if we have another child, could you deliver this child germ-free?
09:49And if the child turns out to be immune-deficient, could you treat the child?
09:57Yes, we said, yeah, we would.
10:00He just swept us along with his enthusiasm.
10:04He had the confidence to say, we can do this, we can do this.
10:11Wilson and his colleagues made a pledge.
10:14If the Vedders were to have a baby with SCID, the doctors would keep him free of infection long enough
10:20to perform a life-saving bone marrow transplant.
10:23We promised them that we would keep him safe.
10:28In the mother's words, can you keep him safe and away from the germs?
10:35And we said, yes, we can.
10:37And we promised that we would do that.
10:41Within eight weeks of losing her first son, Carol Ann was pregnant again.
10:47It was just a couple of months and you don't get over grief of losing a child.
10:52And then somebody comes along and say, you can have another boy and we can make it all right.
10:58I think almost any woman in that emotional state would have probably made the same decision.
11:08But the doctor's confidence had obscured another set of odds stacked even higher against the Vedders.
11:14Even if their baby could be kept germ free, the chances of performing a successful transplant were small.
11:23Bone marrow transplantation was in its infancy and required a near perfect match between donor and recipient.
11:31The doctors knew that the odds of finding a perfect sibling match were one in four.
11:38The odds of finding a match from an unrelated donor were one in hundreds of thousands.
11:45So this had always been a long shot, perhaps a longer shot than they had ever been willing to face
11:51up to.
11:57In the hours after his successful germ free birth, baby David was transported to the clinical research center,
12:04where he was kept in protective isolation, while doctors tested him to see if he had SCID.
12:11They brought him to the unit in the little bitty bubble so that they could hook him up to get
12:19the air and everything.
12:20And he was just adorable. He was a beautiful baby. He didn't really look like a newborn.
12:24All this black hair, just precious.
12:28We got a call about a week after David was born and asked us to come in.
12:34We were driving in very optimistic, very hopeful.
12:38We sat down with Dr. Montgomery and Dr. South and they presented us with the news that David did in
12:45fact have SCID.
12:47We were devastated. We were so heart sick.
12:57Before she left the hospital, Ms. Vedder came to see him.
13:01And she had tears in her eyes.
13:03She, of course, had just lost the other baby.
13:08And she looked at me and she said,
13:10I can't fall in love with this one and be hurt again.
13:14I felt if I could stay distant from him, then if the worst happened, I could handle it better.
13:27So I was hesitant to reach into the glove and touch him.
13:34But once I did, I was hooked for life.
13:41Despite his diagnosis,
13:42there was still hope for David.
13:45Unlike other SCID babies, he had remained germ-free inside his bubble.
13:51The doctors now moved into the second phase of their plan,
13:54to transplant the bone marrow of David's older sister, Catherine.
13:59The doctors were optimistic that they could move straight forward into a successful bone marrow transplant.
14:05They had expected Catherine to be a perfect match for David.
14:10And then came the devastating news that Catherine was not a match.
14:15We just didn't even, we didn't make plans ahead of time.
14:23If he's got this disease, we'll look for a matching donor and probably he'll match Catherine like his brother did.
14:32And we'll give him the transplant and he'll be well.
14:39I have to be honest that we never sat down and outlined this is what we will do if.
14:49It was an unspoken understanding that he would match Catherine, we would transplant him, it would work.
15:00And six weeks to three months later, he would be reconstituted and come out and we would all be joyful
15:10and maybe famous.
15:13My problem with the medical team is that they offered a bit too much hope.
15:19And they offered too much and they gave too much and they trapped themselves.
15:26I don't know if confused is a good word for the doctors.
15:29We were certainly confused.
15:31There were a lot of theories.
15:34They told us that David would have to stay inside this germ-free environment.
15:38Once we gathered ourselves, then we said, okay, now what, what happens now?
15:49In what seemed like an instant, the isolator had gone from a stopgap measure to David's permanent home.
15:57Little more than an inflated balloon, the isolator was fed with a constant flow of filtered air.
16:05Comprised of a five foot by three foot living chamber, it was connected to an even smaller supply bubble.
16:12David had to be handled through thick black neoprene gloves, spaced at intervals throughout the isolator.
16:18Everything he ate, wore or touched had to be sterilized with parasitic acid and placed inside steel capsules inserted through
16:27a system of airlocks.
16:30Even David's doctors weren't certain it would hold up.
16:34I had no idea that this situation would work for the next week, much less for the next year.
16:46I kept expecting to walk in any day and, in my worst nightmare, just see him falling apart.
16:57The medical team now faced a choice.
16:59They could leave David in the bubble, hoping that his immune system might kick in or a new treatment be
17:05found.
17:06Or they could take him out and let his disease run its natural course.
17:13In June 1973, when David was 18 months old, the chairman of the pediatrics department decided it was time to
17:21remove him from the bubble.
17:24He essentially said, get this over with.
17:27His point was, you have a case to treat.
17:31You use the best tools that you have at the present time.
17:35And if it doesn't work, it doesn't work.
17:37My point was that this would be the approach with a child that was sick.
17:42David was not sick.
17:44So I said to him, if you think it should be terminated, you terminate this case.
17:49You're chairman of the department, but I'm not going to do it.
17:53And that was the end of that.
17:58The faith David's doctors placed in technology reflected the times.
18:03By the early 1970s, American medicine itself had undergone a significant cultural shift.
18:10Following World War II, important advances in medical technology, from the iron lung to the artificial heart, had emboldened doctors.
18:19By 1971, we in the United States were well along in a remarkable period of medical progress.
18:28Medicine was on a roll.
18:30And in that climate, it was natural for physicians and researchers to want to take up any condition which was
18:41incurable and treat it as a challenge.
18:45They treated it as an enemy to be defeated.
18:50David's doctors were especially prone to the lure of technology.
18:54Texas Medical Center, home to Texas Children's, was the epicenter of medical innovation in the United States,
19:01from the separation of conjoined twins to major advances in heart transplant surgery.
19:07Below me, a delicate operation is taking place, an operation on the human heart.
19:12The surgeon is Dr. Michael Ellis DeBakey, the world-renowned Houston specialist.
19:19Lots of wonderful things happened in the Texas Medical Center.
19:22It's an amazing institution with a history of many amazing breakthroughs.
19:29Lots of us that were involved with David's care really assumed that big breakthroughs were possible in terms of immune
19:39deficiency.
19:39So there was an element of hope, expectation, of optimism, that we're working on this, but we're not there yet.
19:51Now banking on a future medical breakthrough, David's doctors threw themselves into a vigorous research effort into SCID.
19:59They scoured the world for leads on how to perform a transplant without matching bone marrow,
20:05and meticulously studied David himself to better understand the human immune system.
20:12Finally, finally, here was something that we had to work with.
20:17We were able to watch the progression of this disease uninfected for the first time in history.
20:28The immunization experiment will include the following.
20:32Bacteriophage will be given intravenously.
20:35Small blood samples will be collected after 15 minutes.
20:383 days.
20:393 days.
20:405 days.
20:417 days.
20:4214 days.
20:4421 days.
20:45David was a research subject as well as a patient.
20:48And those two roles became blurred.
20:52Here is a child who, over time, has so many punctures that his feet start to look like pin cushions.
21:02When I first saw David, I was very disturbed, I think deeply disturbed, by the fact that he was in
21:09this laboratory tube.
21:12I was not comfortable.
21:14I mean, I felt like I was visiting a rat in a cage.
21:18He was not a guinea pig in the sense that we delivered him with the intent of having an experimental
21:26subject.
21:27But we had to continue our research because we were working in an area where there was no previous experience.
21:39While research went forward on David, Wilson and his colleagues spoke at conferences, wrote articles, and appeared in the media,
21:47painting a cheerful picture of David's life in the bubble.
21:51Dr. Wilson, how do you assess David's development?
21:53Physically, he is well-developed. He is strong. His muscular development is normal. His psychological development, if anything, is ahead.
22:06Primed by David's doctors and the hospital's public relations department, the media eagerly reported what one newspaper called the miracle
22:15in Houston.
22:17There's a very special little boy here, one who is waiting to leave the hospital for good and go outside.
22:22The interest in David from his germ-free birth forward built over time, and he became a celebrity in his
22:32own right.
22:33News stories don't mention his last name in order to give some privacy to a little boy and his family,
22:38but the story of David, the boy who lives in a bubble, has been told all over the world.
22:42The story told over and over again to the American public in David's early years was that this was very
22:48successful, that this was a very happy, intelligent, active, thriving child, and that the cure was just coming right around
22:58the corner.
22:59He seems quite happy and active with an abundance of toys and love, and that makes the waiting easier.
23:07The upbeat news was not entirely unfounded. While just a few months old, David had been allowed to leave the
23:14hospital for his parents' home an hour away.
23:19David never questioned in the early years why he was in a bubble. It was routine for him to have
23:27his mother hold him with black gloves on.
23:30In the beginning, you know, children, their needs are very simple, so David's needs were very simple.
23:37But as months turned into years, there was little real progress in the search for a cure.
23:44Bone marrow registries in Europe had not come up with a matching donor for David, and there were no breakthroughs
23:51on a non-matching transplant.
23:55Nothing seemed to offer real hope, and most of the procedures offered real danger.
24:04And as long as the isolator was working, we didn't have to do anything.
24:10Happy birthday!
24:12By David's third birthday in September 1974, there had been a significant shift in how his doctors saw his case.
24:21The original promise to quickly cure David had been replaced by what Dr. Wilson himself called a holding pattern.
24:31The bubble was successful for David. It did protect him. He was a living, breathing, laughing, talking child. And now
24:42they had no way out.
24:45There was no way to conscientiously, in their thinking, remove this happy child from this protective environment and expose him
24:58to the dangers of the world.
25:00How do you kill a child?
25:09Our case today has to do with a little boy who's been a number of years now in an isolator.
25:17In the winter of 1975, doctors held a conference at the University of Virginia on the now famous case of
25:25the boy in the bubble.
25:26The featured speaker was Raphael Wilson himself.
25:30Can I have the first slide?
25:34Wilson began with a detailed lecture on the mechanics of the isolator.
25:39When he was two years old, we built this playroom, which has solid plexiglass walls.
25:45What happens very quickly, questions are raised spontaneously from the audience.
25:52Questions that had never been asked before.
25:56Well, I share, I'm sure, with a lot of people here, extreme admiration for the technological sophistication of what's been
26:03done for David.
26:05But I'm very deeply troubled, as I think many of us are, about when he begins to ask us, what
26:11have you done to me?
26:12What is our ethical position if and when David says, as he may well do somewhere down the line,
26:21I've had enough, I'm coming out of here, just stand aside.
26:27I really felt that sometimes their questions were very inappropriate in the sense that they were based on situations that
26:38simply did not exist.
26:40Having been raised in this from the outset, he can no more think of removing himself from the bubble than
26:48shedding his skin.
26:50We were doing all right.
26:52Why do we have to worry about something that may be years down the road, that may never occur,
27:02and that probably, if you look at what we have done over the past two or three years of taking
27:09care of David,
27:10when the problem comes up, we'll solve it.
27:15They were totally unwilling to look ahead.
27:18They were happy with the present, with how well things were going,
27:22and they were unwilling to face the fact that this very intelligent child
27:28is going to grow into an awareness of his situation and is going to question it.
27:45That's very good, sweetheart.
27:48In his first few years of life, David had thrived in isolation.
27:53It was amazing to see him develop.
27:56When he was 21 months old, he was playing with his little red wagon,
28:01and he was turning the wheels, and he says,
28:02what is that in there?
28:04His first real sentence.
28:06See, he was just amazing how much he could learn and how quickly.
28:11By the time he was four, however, David was presenting a whole new set of challenges.
28:18It was one thing to keep a toddler in the bubble, another to contain an energetic boy.
28:25The older he got, the more active he was, you know.
28:27You had to be super, super careful.
28:31What's wrong with the edges on this lid?
28:34Sharp.
28:34They're very sharp, and what can they do to you?
28:37Cut.
28:37Cut.
28:38At one time, after they had taken his blood sample,
28:42he had kept one of the little butterflies that they used to insert into the vein,
28:48and nobody noticed it.
28:51And that evening, all of a sudden, he dashed up the stairs and into the bubble,
28:56and he was going all over the place.
28:59What are you doing?
29:00And I hear a little butterfly, and he was poking holes in the isolator.
29:05This was the only time he had any control.
29:08He could do something, you know, to the isolator that would get everybody going.
29:15Dr. Wilson decided that the only way to control David was to make him more aware of the dangers posed
29:21by the outside world.
29:23I said, what happened to your isolator today?
29:27He said, somebody made a hole in it.
29:30I said, yeah, I know.
29:32Somebody made a hole in it.
29:33Who made the hole?
29:36And he thought for a minute, and he said, I made the hole, and he put his head down.
29:41So I said, okay, David, I want to tell you why making a hole in the isolator is very bad.
29:51I said, do you know what will happen if you make a hole in the isolator?
29:55And he said, no.
29:57Little bugs will get in.
30:00Little, tiny, tiny bugs that you can't even see.
30:03But they're bad.
30:06They'll make you sick.
30:08If they get in, they'll make you hurt all over.
30:13They'll hurt your eyes, they'll hurt your ears.
30:16I put down this hole in anatomy, and I said, now, do you understand why it's important that you don't
30:23make any holes in the isolator?
30:25Yeah, he understood.
30:27This was the first time that we had any conversation with him about the reasons for his isolation.
30:39I transferred linen and took trash out.
30:42While I was cleaning up, a patient walked up to the door and stated, will he have to live in
30:48that thing for the rest of his life?
30:51The speaker system was on at that time.
30:54I'm positive David heard the statement clearly.
30:57He reacted with silence and sucked his thumb.
31:01With greater awareness, David began to comprehend how different his life was from others.
31:08I think he became a little bit more introspective, quieter.
31:12When I would come to visit, he would really have very little to say at all.
31:18He would sit on his knees and rock back and forth.
31:24Child psychologist Mary Murphy began to work intensively with David when he was five.
31:30I really liked him.
31:32I really thought he was delightful.
31:34Yet at the same time, I felt so sad.
31:38I thought, oh my God, how can this bright, bright child survive in this little space?
31:47As Murphy spent more time with David, she began to discover new ways in which his confinement was affecting him.
31:55There were so many things he couldn't understand, like wind, he absolutely could not understand it.
32:01I made the pinwheel and put it on his blower, but still he didn't understand the wind outside.
32:09He saw the world as flat.
32:11There was nothing behind anything.
32:13I said something about leaves.
32:15And he said, well, trees didn't have leaves.
32:17They were a brown rectangle and a green oval.
32:21And so it was pouring down rain, I went out and I got a branch off the tree to show
32:25him.
32:25And he just got so excited about that, he just couldn't believe it.
32:31To relieve his sense of isolation, Murphy encouraged David to escape his bubble using his imagination.
32:40They pretended that they were on space odysseys, places that transcended his isolator.
32:48And they had many great adventures where they explored other planets in which he got to be a swashbuckling space
32:55captain.
32:58And night after night, we would make all these trips all through the universe.
33:04He was the pilot and I was his co-pilot.
33:08And he would always protect me and bring me back safe.
33:19What's your hopes for him?
33:20Well, we're very optimistic about David's problem with all his genius doctors working on his case all over the world.
33:29We truly believe that one day, soon, David will be able to come out.
33:36As the vetters waited for a cure, research on David began to produce results.
33:42Immunologists had learned how SCID suppressed the immune system.
33:47Hematologists learned about the properties of germ-free blood.
33:50And psychologists learned about the human response to physical isolation.
33:56While the scientific harvest had been rich, it had done little to help David.
34:02The barrier to a bone marrow transplant, or any other possible cure, remained as insurmountable as ever.
34:10We have commit, we have, we have liftoff.
34:14Looks good.
34:15Okay.
34:17Then in 1975, Dr. Wilson had a brainstorm.
34:21He would get NASA to design and build a miniature space suit for David.
34:28Right now, he's been restrained to his little bubble world, and he's never really been able to get out and
34:35walk and play and maybe go to the zoo.
34:38But this would give him a much more intimate touch with the real world.
34:44After more than two years of development, David prepared to enter the space suit for the first time.
34:52His mother was at one end of the tunnel, and she kept encouraging him, come on, come on.
35:00The very last minute, he decided, well, maybe this wasn't such a good idea.
35:04Maybe I'll just stay in my little bubble.
35:07Finally coaxed down a ten-foot-long tunnel into the suit, David took his first tentative steps outside the bubble.
35:17David was in awe of everything around him.
35:21He was looking right and left all the time.
35:24He was fascinated by the simple things like the faucet in the laboratory.
35:32After a few walks in the hospital, David was allowed to explore the outdoors for the first time in his
35:38life.
35:39The mobile unit has given David the chance to explore the outside world, and in a recent outing, he playfully
35:45sprayed his mother with a garden hose.
35:47A specially designed suit allows him to experience the world.
35:51The ever-smiling, effervescent youngster took his first walk in the outside world.
35:55He watered the yard and played with the family dogs.
35:58This is a PR dream, but David, behind the cameras, where no one can see, is very afraid of getting
36:07in that space suit.
36:09He was very, very frightened.
36:12He would complain that it was hot, or that it was too small, or some, something.
36:20You know, he wanted out, but yet he was scared to death that the germs would come in.
36:25I mean, the world is full of germs.
36:29The fear he had, I mean, that fear was instilled in him from day one.
36:36After only six walks, David refused to get back in the space suit, and it was permanently retired.
36:44It was disappointing. It was very disappointing.
36:47I'm not sure what I imagined. I just didn't imagine it would be that difficult.
36:53It made it very clear that trying to help him experience the wider world was going to be ever so
37:00much more difficult than anybody expected.
37:10Everyone involved in David's care has felt trapped by the situation at one time or another,
37:16because we do feel that it's a problem that we can't just turn off and walk away from.
37:28David's doctors had always promised to keep him safe until they could find a cure.
37:32But after years of frustration, they each left to pursue their careers elsewhere.
37:38Dr. South was the first to go.
37:41My reasoning was, I would not leave in spirit. The work is going to go on.
37:48I've done what I can do for David.
37:51Jack Montgomery left a few years later.
37:55I was not contributing in any way to the solution of David's problem. I was just keeping things going.
38:06In the spring of 1976, shortly before David turned five, Raphael Wilson suffered a major heart attack.
38:14David was taken down the hall to visit him.
38:16The nurses wheeled his isolator into my room.
38:20David took one look at me and started to scream.
38:23His worst fears were coming to light.
38:27Something could happen to me, so that I wouldn't be able to take care of him.
38:33After his recovery, Wilson informed David that he too would be leaving Houston.
38:39The three people who are to keep him alive are no longer on his case.
38:47David understood that his life depended on those individuals finding him a cure.
38:55And when each of those individuals, from his perspective, abandons him,
39:02he must have understood that his future took a turn for the worst.
39:13David was very quiet today, sucking his thumb constantly and rocking back and forth.
39:18He can't say why he's bored and unhappy, but that he definitely is.
39:23David seemed upset when I arrived.
39:25He was repeating out loud,
39:27One, two, three, four.
39:29I can't take this anymore.
39:31David did not talk openly about being unhappy, but did want me to sit and hold his hand for most
39:38of the session.
39:39In books and stories, David keeps coming back to themes of death.
39:43This is increasingly prevalent in how David responds to stories he sees on television.
39:47The entire group feels sadly that David's anxieties are intensifying rapidly and that his anxieties are getting beyond his control.
39:57You would go in the room and he would be just sitting there staring into space.
40:03You would say something to him and he would respond,
40:05I don't want to talk, leave, you know, get out.
40:09There were times when I really wondered, why are we doing this?
40:13Why are we putting this child through all of this?
40:21It was the mental anguish of knowing that tomorrow is just going to be like today, only worse.
40:29He had no choices and his hormones were kicking in and he felt that everybody was deserting him, which in
40:39reality they pretty much were.
40:43Well, he'd always had nightmares.
40:46He would tell me what his nightmares were.
40:50We would reenact them and I said, now what we're going to do, we're going to change the end.
40:58Well, the king of germs, that was a recurring one.
41:03The king of germs was going to get him and the king of germs had all these wives.
41:10We could slay the wives and we would kill the people working for the king, but we never could get
41:16to the king.
41:18We just couldn't get the king.
41:23If you didn't get the king of the germs, the dream goes on.
41:34Here he was inside of the system.
41:38Something obviously had to be done.
41:40It just seemed to be going on and on and on.
41:44And one had to say, when is this going to stop?
41:49In the fall of 1978, immunologist William Shearer was put in charge of David's case.
41:57Dr. Shearer saw David with a fresh vision.
42:01He was in no sense hostage to the original set of attitudes and hopes that put David in that isolator.
42:08What he saw, quite simply, was a failed experiment.
42:11My feelings were to advise the parents of the options and to really draw a focus to a decision.
42:22Shearer had David examined by a team of psychiatrists.
42:25Their report was unequivocal.
42:28David would continue to deteriorate as long as he remained in the bubble.
42:35I have shared the preliminary findings with the Vedders, that David has extraordinary fears and anxieties.
42:43My recommendation to Mr. and Mrs. Vedder was that David be removed from the isolator system.
42:49The Vedders appeared to be shaken by this discussion.
42:52I remember the conversation, and he was very blunt.
43:00It was suggested that David be removed from the bubble and then just be treated accordingly.
43:06Well, I knew that that was a certain death.
43:13Panicked by Dr. Shearer's recommendation, the Vedders turned to David's original doctors for advice.
43:19All three were outraged.
43:23For these many years, we had had a success story.
43:28And should this happen, this would be the ultimate declaration that it was a failure, that the whole thing was
43:36a failure.
43:37None of the three of us were going to just sit by and let this happen.
43:42We assured them that nobody could take David out of the isolator until they consented.
43:55Stealed by the doctor's resolve, the Vedders demanded that Dr. Shearer maintain David in the bubble until a cure could
44:02be found.
44:04To continue to say, this is a bridge, we just have to wait longer, this is a bridge, we just
44:09have to wait longer, be patient, is wrong.
44:15It's depriving the parents of the choice that they have to make to confront the options that have to be
44:25confronted.
44:26If you continue to pretend that this treatment or this environment, this plastic bubble, has not turned into a prison.
44:39In the spring of 1981, when David was nine, Shearer decided to discharge him to his parents' full-time care.
44:48Surrounded by his family at home, David's mood lightened for a time.
44:52But soon, even his parents began to be concerned.
44:57I think, for us, the summers were especially hard.
45:02I would notice that David would spend a lot of time gazing outside.
45:07And he would see young boys on bicycles or he would see kids tumbling in the grass.
45:14I sensed sadness to him.
45:17The time was coming soon where, you know, something would have to be done.
45:25Just as the situation reached bottom, came hints of the long-sought-after breakthrough.
45:30A team of researchers in Boston announced that they had developed a way to safely transplant incompatible bone marrow.
45:37The Boston procedure offered hope that Catherine's bone marrow could finally be used to kick-start David's immune system.
45:45The procedure is experimental.
45:48It has not been proven to be efficacious, but after nothing on the radar screen, this is the first bleep
45:56of hope.
45:58It was a chance.
46:00If it didn't work, he would still be okay.
46:03David knew that.
46:04That's how we explained it to him.
46:06That's how science explained it to us.
46:09In the early morning hours of October 21, 1983, Dr. Shearer transfused two ounces of Catherine's bone marrow into David's
46:18body.
46:20We did fantasize.
46:22We did think about how all of that was behind us and how exuberant we were going to be when
46:29we could touch David for the very first time.
46:32Hello, everybody.
46:33For 12 years, we've known the youngster simply as David the bubble boy.
46:37But early this morning, doctors operated on David.
46:40And our medical reporter, Christy Myers, is with us now with the good news that this operation may mean that
46:45David someday can leave that bubble.
46:48The tone was very optimistic.
46:51Everything seems to be going well.
46:54You know, you sort of went around with your fingers crossed saying, no news is good news.
47:02And then came the bad news.
47:10It was New Year's Eve when I took his temperature and it seemed elevated.
47:16I called the hospital and I said, you know, something strange.
47:20David has a low temperature.
47:23In the days that followed, David's temperature spiked as high as 105 degrees.
47:28He began hemorrhaging from his intestines and vomiting blood.
47:33Dr. Shearer struggled to treat him inside the bubble.
47:37He was to the point where his fever could not be controlled.
47:41His intestinal bleeding could not be controlled.
47:44It was just impossible.
47:46This contraption that protected him was now his greatest threat.
47:50It had to go.
47:51It had to go.
47:55Shearer told David that it was time to leave his bubble.
47:59On February 7th, 1984, David began to make his way out.
48:06He crawled into the supply bubble and took all his effort.
48:11And Shearer put his hands under David's arms and pulled him out and laid him on the gurney.
48:21David was wheeled to a sterile room, freed from isolation for the first time in his life.
48:29Even the smallest things seemed wondrous.
48:33The sun was coming through in little streams through the Venetian blind and he saw what he called, he said
48:41there were minute snowflakes.
48:45And it was actually the dust from the linen and he was there and he was feeling comfortable.
48:52He was playing with the snowflakes.
48:55But David's fever and bleeding persisted and his condition gradually deteriorated.
49:01Finally, he lapsed into a coma.
49:04On February 22nd, 1984, David's parents were brought in to see him.
49:11I looked over to the side of David's room and there was a physician standing and I asked him if
49:22I could remove my glove and touch David.
49:26And he nodded yes.
49:29So I walked over to David and I took my glove off of my hand and I stroked the back
49:38of his hand for the first and last time.
49:43At 8 p.m. that night, David was pronounced dead.
49:47He was 12 years old.
49:52It came and it happened and there was no emergency.
49:56There was no crew brought in to resuscitate.
50:00There were no tubes inserted.
50:02We decided that it was not going to happen.
50:05This was going to be a dignified death.
50:07And it was.
50:11It wasn't until David's autopsy that the cause of his death became known.
50:16Catherine's bone marrow had contained traces of a dormant virus.
50:20Once inside David's defenseless body, the virus had spread rapidly, producing hundreds of cancerous tumors.
50:29Proof that a virus can cause cancer was the most important of the many medical insights that emerged from David's
50:36case.
50:37If these discoveries had done little to help David,
50:40they would help to treat thousands of immune compromised children in the future.
50:47Yet some continued to question whether David himself had borne too high a price for the advancement of medicine.
50:56David was almost certainly the first human guinea pig in history.
51:03The first human being to live their entire lives in a laboratory capsule.
51:14And I don't think we ought to do that again.
51:17A team of dedicated and courageous people, including David and his family, set out to treat an incurable disease.
51:35And in the process, they gave him 12 years of good life that he would not have had otherwise.
51:49I don't have regret and I don't have blame.
51:55Any parent who has lost a child wonders if their brief life has meant something to the world.
52:01And science has said to me, yes.
52:05As a society, we have yet to confront these issues.
52:10We're still amazed and baffled by our technology.
52:14We still chase after things.
52:17We still deploy the technology entirely too frequently without having an exit strategy.
52:26Scientific curiosity, the desire to test technology, to see what is possible,
52:33has to be tempered with a very deep respect for our need to be human.
53:00There's more about the boy in the bubble at American Experience Online.
53:04See footage of David through the years.
53:07Explore his mobile suit.
53:08Access a forum with a panel of experts.
53:11And get tips for starting your own PBS program club.
53:15All this and more at PBS.org.
53:49All this and more will be made of, where, as you know, the customer that is big and more.
53:51If you're interested.
53:51You'll see me having a good friend.
53:51I'm sure it will be amazing in the past and more in the future.
53:51All this and more will come together.
54:00All this and more is the same.
54:08The answer will be the same.
54:08By the way, the technology and we need data.
54:49American Experience is made possible by the Alfred P. Sloan Foundation to enhance public understanding of the role of technology.
54:56The Foundation also seeks to portray the lives of the men and women engaged in scientific and technological pursuit.
55:02At the Scots Company, we help make gardens more beautiful, lawns greener, trees taller. If there's a better business to
55:13be in, please let us know.
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