"He never touched the world..."
December 9, 2015 7:42 AM Subscribe
The New York Times looks back on the boy in the bubble.
Such mixed feelings about this story.
Yeah, for real. Can't say I think much of the parents, considering the fact they knew their child would have a 50-50 chance of having SCID but went ahead anyway because they "wanted more children to accompany the daughter they already had." Especially considering that one baby had already died of it.
posted by holborne at 8:06 AM on December 9, 2015 [6 favorites]
Yeah, for real. Can't say I think much of the parents, considering the fact they knew their child would have a 50-50 chance of having SCID but went ahead anyway because they "wanted more children to accompany the daughter they already had." Especially considering that one baby had already died of it.
posted by holborne at 8:06 AM on December 9, 2015 [6 favorites]
The odds that any son in that family would have the immune deficiency were gulp-worthy: 50-50. Nonetheless, the parents wanted more children to accompany the daughter they already had. And so they took a chance. They put their faith in the developing technology of bone-marrow transplants and the possibility that it had advanced far enough to build a sound immune system in a child who would lack one.I wonder what the Vetter family thinks of gene therapy? They'd probably approve of it, since they accepted bone-marrow transplants for their son. Still, I'm angry that the same people who are against gene therapy as "playing God" aren't equally against bearing a new child with high odds of such a debilitating condition. Would it have been better, from a utilitarian perspective, to adopt a healthy kid?
[...]
A possible new weapon in the medical arsenal is gene therapy, still in the clinical trial stage. With a harmless virus serving as the carrier, a healthy gene is inserted into a patient’s system to do the work of a defective gene that is the source of diseases like immune deficiency, sickle cell anemia and hemophilia. Gene therapy’s healing potential is widely accepted. But it has had plenty of setbacks along with triumphs since it was first tried in 1990, and has yet to be blessed by the Food and Drug Administration. Inevitably, too, there are ethical considerations. For some people, anything that smacks of genetic tinkering can touch off Frankenstein fears about whether we are redesigning human beings.
posted by Rangi at 8:09 AM on December 9, 2015
Sure, the real Bubble Boy's story is more touching - - but it isn't half as funny as the way underrated low comedy by the same name starring Jake Gyllenhaal in one of his early roles.
posted by fairmettle at 8:10 AM on December 9, 2015 [6 favorites]
posted by fairmettle at 8:10 AM on December 9, 2015 [6 favorites]
holborne: considering the fact they knew their child would have a 50-50 chance of having SCID but went ahead anyway because they "wanted more children to accompany the daughter they already had." Especially considering that one baby had already died of it.
I think it speaks more to the stigma of having an only child that it's preferable to take a fifty-fifty coin flip on the chance that you could inflict untold suffering on a child just to provide a sibling.
posted by dr_dank at 8:18 AM on December 9, 2015 [2 favorites]
I think it speaks more to the stigma of having an only child that it's preferable to take a fifty-fifty coin flip on the chance that you could inflict untold suffering on a child just to provide a sibling.
posted by dr_dank at 8:18 AM on December 9, 2015 [2 favorites]
Now I'm waiting for the FPP on the baby with the baboon heart.
posted by aureliobuendia at 8:27 AM on December 9, 2015 [10 favorites]
posted by aureliobuendia at 8:27 AM on December 9, 2015 [10 favorites]
I think it speaks more to the stigma of having an only child that it's preferable to take a fifty-fifty coin flip on the chance that you could inflict untold suffering on a child just to provide a sibling.
No, it doesn't, actually. Without getting into a discussion of whether there's actually a "stigma" relating to having only one child, I don't think such a stigma, even if it existed, excuses a knowing decision to have a child that you know will stand a damn good chance of dying pretty unpleasantly within the first few years of their life. As between sucking it up and living with a "stigma" and deliberately making a child suffer because you want to adhere to societal expectations -- well, I don't think most people would have a terribly hard time making that decision, and if they did, it says a hell of a lot more about them than it does about the society that supposedly influences their decision.
posted by holborne at 8:36 AM on December 9, 2015 [14 favorites]
No, it doesn't, actually. Without getting into a discussion of whether there's actually a "stigma" relating to having only one child, I don't think such a stigma, even if it existed, excuses a knowing decision to have a child that you know will stand a damn good chance of dying pretty unpleasantly within the first few years of their life. As between sucking it up and living with a "stigma" and deliberately making a child suffer because you want to adhere to societal expectations -- well, I don't think most people would have a terribly hard time making that decision, and if they did, it says a hell of a lot more about them than it does about the society that supposedly influences their decision.
posted by holborne at 8:36 AM on December 9, 2015 [14 favorites]
My cousin's in a bubble.
posted by bondcliff at 8:38 AM on December 9, 2015 [3 favorites]
posted by bondcliff at 8:38 AM on December 9, 2015 [3 favorites]
Can't say I think much of the parents, considering the fact they knew their child would have a 50-50 chance of having SCID but went ahead anyway because they "wanted more children to accompany the daughter they already had."
That's the great think about reproductive freedom though. You don't get a say.
posted by roomthreeseventeen at 8:46 AM on December 9, 2015 [8 favorites]
That's the great think about reproductive freedom though. You don't get a say.
posted by roomthreeseventeen at 8:46 AM on December 9, 2015 [8 favorites]
Moops!
posted by briank at 8:52 AM on December 9, 2015 [7 favorites]
posted by briank at 8:52 AM on December 9, 2015 [7 favorites]
I don't know how people can be absolutely livid about people drinking or using drugs during pregnancy, but think this kind of situation is just fine. The consequences are the same, or worse.
posted by Mitrovarr at 8:57 AM on December 9, 2015 [2 favorites]
posted by Mitrovarr at 8:57 AM on December 9, 2015 [2 favorites]
That's the great think about reproductive freedom though. You don't get a say.
You're absolutely right -- I don't get a say in that I get to affect their decision, nor should I. But I certainly get to have an opinion based on how their decision works upon someone else affected by it.
posted by holborne at 8:58 AM on December 9, 2015 [7 favorites]
You're absolutely right -- I don't get a say in that I get to affect their decision, nor should I. But I certainly get to have an opinion based on how their decision works upon someone else affected by it.
posted by holborne at 8:58 AM on December 9, 2015 [7 favorites]
"There never was a child quite like David Vetter." Really, New York Times? Really?
posted by rikschell at 9:08 AM on December 9, 2015 [3 favorites]
posted by rikschell at 9:08 AM on December 9, 2015 [3 favorites]
I only knew about the guy from the second-hand Seinfeld plots that got passed around at school.
posted by grobstein at 9:12 AM on December 9, 2015
posted by grobstein at 9:12 AM on December 9, 2015
No mention of the made for TV movie, "The Boy in the Plastic Bubble", which was made during Vetter's lifetime (he criticized its technical accuracy) and among other things helped launch the career of John Travolta.
posted by ardgedee at 9:18 AM on December 9, 2015 [4 favorites]
posted by ardgedee at 9:18 AM on December 9, 2015 [4 favorites]
They made a choice. They worked very hard for their child and...that child died. They did the best they could with what they had. So I guess when other people have judgmental opinions criticizing their choices, well, I think it's sad. The parents carry more in their hearts than we will ever be able to feel on this subject. Because they lived that life while we did not. I believe the difference between them and myself makes it worth having compassion for them and what they all (David Vetter included) went through.
posted by Annika Cicada at 9:21 AM on December 9, 2015 [6 favorites]
posted by Annika Cicada at 9:21 AM on December 9, 2015 [6 favorites]
ardgedee - you scooped me by a minute.
One of my earliest, most poignant movie/tv memories is of the Boy in the Plastic Bubble. I can't believe it was the same year that Star Wars came out, ...emotionally its in such a different part of my memories.
posted by Auden at 9:23 AM on December 9, 2015 [2 favorites]
One of my earliest, most poignant movie/tv memories is of the Boy in the Plastic Bubble. I can't believe it was the same year that Star Wars came out, ...emotionally its in such a different part of my memories.
posted by Auden at 9:23 AM on December 9, 2015 [2 favorites]
sometimes raged off-camera at the terrible hand fate had dealt him.
Way to bury the lede. I read somewhere that he would do things like smear his feces on the bubble walls. None of that appeared in the feel-good Travolta movie. And then they laughed about it in that god-awful Jake Gyllenhaal movie. Mixed feelings, again.
posted by Melismata at 9:40 AM on December 9, 2015 [4 favorites]
Way to bury the lede. I read somewhere that he would do things like smear his feces on the bubble walls. None of that appeared in the feel-good Travolta movie. And then they laughed about it in that god-awful Jake Gyllenhaal movie. Mixed feelings, again.
posted by Melismata at 9:40 AM on December 9, 2015 [4 favorites]
Medicine is magical and magical is art
Thinking of the boy in the bubble and the baby with the baboon heart
posted by TedW at 9:46 AM on December 9, 2015
Thinking of the boy in the bubble and the baby with the baboon heart
posted by TedW at 9:46 AM on December 9, 2015
From the link in the FPP orange swan referenced:
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.
That kind of colors my opinion of his parents.
posted by TedW at 9:54 AM on December 9, 2015 [12 favorites]
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.
That kind of colors my opinion of his parents.
posted by TedW at 9:54 AM on December 9, 2015 [12 favorites]
sometimes raged off-camera at the terrible hand fate had dealt him
For various reasons, the public has an innate need to see people with disabilities or people who have been dealt a terrible hand in life approach their lot in life with gratitude and a smile. And we will apparently present a false image to the public about people in these circumstances to satisfy this need.
posted by deanc at 9:55 AM on December 9, 2015 [14 favorites]
For various reasons, the public has an innate need to see people with disabilities or people who have been dealt a terrible hand in life approach their lot in life with gratitude and a smile. And we will apparently present a false image to the public about people in these circumstances to satisfy this need.
posted by deanc at 9:55 AM on December 9, 2015 [14 favorites]
The real villains of this story will always be the self-important doctors at the Baylor College of Medicine who thought themselves so wise and so wondrous that they deigned to extend their hands and offer these grieving parents the hope of having a healthy, happy child, even though such a thing was not theirs to give. It was the most crass opportunism – there was nothing to lose but these parents' happiness and their child's life, and nothing to gain but worldwide fame and admiration for wonder-working doctors. Sometimes, being a good doctor – hell, being a decent human being – means accepting when death is inevitable and helping those most affected deal with that reality, instead of coldly seeing each medical calamity as an opportunity for career advancement.
I haven't been able to watch the NYT documentary in the main link above, but if it's as terribly vague and milquetoast as the article, then it's probably not worth watching at all. I'll be the third to recommend Steve McVicker's fine article in the Houston Press, "Bursting the Bubble," which was, as orange swan and TedW have noted, linked in this Metafilter post in 1997. It's a much more thoughtful, thorough treatment of the whole debacle.
posted by koeselitz at 10:06 AM on December 9, 2015 [10 favorites]
I haven't been able to watch the NYT documentary in the main link above, but if it's as terribly vague and milquetoast as the article, then it's probably not worth watching at all. I'll be the third to recommend Steve McVicker's fine article in the Houston Press, "Bursting the Bubble," which was, as orange swan and TedW have noted, linked in this Metafilter post in 1997. It's a much more thoughtful, thorough treatment of the whole debacle.
posted by koeselitz at 10:06 AM on December 9, 2015 [10 favorites]
I had the pleasure of watching the Travolta movie recently (don't ask). Now that I have access to Wikipedia, I can see why the kid would be a bit annoyed. Travolta's character had it comparatively easy.
posted by RobotVoodooPower at 11:35 AM on December 9, 2015
posted by RobotVoodooPower at 11:35 AM on December 9, 2015
I had the pleasure of watching the Travolta movie recently (don't ask).
(Was it the RiffTrax version, by any chance?)
posted by holborne at 11:39 AM on December 9, 2015
(Was it the RiffTrax version, by any chance?)
posted by holborne at 11:39 AM on December 9, 2015
Maybe the parents were heedless and careless, but they were definitely encouraged by the doctors per the Houston Press link:
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.
I actually couldn't make it through the whole story; I kept imagining my kid caged up like that and freaking out at the idea.
posted by emjaybee at 1:16 PM on December 9, 2015
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.
I actually couldn't make it through the whole story; I kept imagining my kid caged up like that and freaking out at the idea.
posted by emjaybee at 1:16 PM on December 9, 2015
Sure, the real Bubble Boy's story is more touching - - but it isn't half as funny as the way underrated low comedy by the same name starring Jake Gyllenhaal in one of his early roles.
Danny Trejo & Swoosie Kurtz were both awesome in that movie. I still quote it.
posted by BrotherCaine at 4:00 PM on December 9, 2015
Danny Trejo & Swoosie Kurtz were both awesome in that movie. I still quote it.
posted by BrotherCaine at 4:00 PM on December 9, 2015
I don't think it's so much stigma against having an only child so much as some people will just be all "I want a BABY! A(nother) product of Our Love from Our Bodies! I could never adopt because it's not miiiiiiiiiine!" regardless of any kind of logic or reason not to. (I point to Carol on Last Man on Earth as a good example: nothing but cons if you have a baby post-apocalypse and the only pro she has is "It's a BABY!")
posted by jenfullmoon at 5:56 PM on December 9, 2015 [1 favorite]
posted by jenfullmoon at 5:56 PM on December 9, 2015 [1 favorite]
Slate's The Gist recently interviewed Ted DeVita's father (a prominent cancer specialist) and his sister (a medical journalist), and they briefly discussed Ted and the Travolta movie.
posted by Gin and Broadband at 12:00 AM on December 10, 2015
posted by Gin and Broadband at 12:00 AM on December 10, 2015
The situation seems impossible for all those involved, but to be judgmental also seems safe for those of us not going through the situation. The parents wanted a kid and had a 50-50 chance of not having issues. Why not try? Because we say that percentage is not ok, but our own percentages of our own hereditary issues are ok? Our own issues with the environment we can provide are to go by unscathed? Why not choose for the entire world whether they should have kids based not on genetics, but all other life facts. Let's just shut all but the developed world down...
Sometimes I think these are positions taken by those that have an easy time having kids or deciding not to have kids. If you don't face the struggle around reproductive issues, it's easy to judge.
The doctors should be blamed for being optimistic? Well, it turns out that there was a cure, and had the facts been just a bit different (no latent virus in the donor), David might be alive today. Was his relatively few years in a bubble so bad that if you asked him now, in his 40s, whether he should never have been born or allowed to die as a baby, he would say it was all a mistake?
It seems the incremental choices, publicity, and so forth are better targets for critics than the underlying premise of risking to have a child with a disability and then going to lengths to keep him alive. Different diseases require different analysis, but here he really could have physically recovered, and if we think that his bubble life was hard, well, there are a few million refugees trying to find new homes right now that might be bit scarred too and no, it's not better they are dead. We are seeing the last of the kids that went through concentration camps during WWII pass away and some of their lives were far worse for many years than living in a bubble - but I'm sure glad they survived. This set of should we or shouldn't we questions about David just doesn't seem to be a fertile place for helpful debate by those not involved directly in the situation.
posted by Muddler at 7:48 AM on December 10, 2015 [1 favorite]
Sometimes I think these are positions taken by those that have an easy time having kids or deciding not to have kids. If you don't face the struggle around reproductive issues, it's easy to judge.
The doctors should be blamed for being optimistic? Well, it turns out that there was a cure, and had the facts been just a bit different (no latent virus in the donor), David might be alive today. Was his relatively few years in a bubble so bad that if you asked him now, in his 40s, whether he should never have been born or allowed to die as a baby, he would say it was all a mistake?
It seems the incremental choices, publicity, and so forth are better targets for critics than the underlying premise of risking to have a child with a disability and then going to lengths to keep him alive. Different diseases require different analysis, but here he really could have physically recovered, and if we think that his bubble life was hard, well, there are a few million refugees trying to find new homes right now that might be bit scarred too and no, it's not better they are dead. We are seeing the last of the kids that went through concentration camps during WWII pass away and some of their lives were far worse for many years than living in a bubble - but I'm sure glad they survived. This set of should we or shouldn't we questions about David just doesn't seem to be a fertile place for helpful debate by those not involved directly in the situation.
posted by Muddler at 7:48 AM on December 10, 2015 [1 favorite]
Fair enough to notice that we arm-chair quarterbacks have the luxury of examining the contours of David's life and the actions taken by his parents and the doctors from a safe distance. Fair enough, too, to notice that we have not walked in their shoes--haven't been there, done that, so our opinions are weighed accordingly. I also like to remember that it is permitted to learn from actions taken by others. I don't have to get the stick actually jabbed into my eyeball to move the pointy end away from my face. It's sometimes enough that my feeble powers of empathy cause uncomfortable stirrings in me as I think about the pain of others. Even if it's not enough, my imagination is still the best tool I have.
The doctors will tinker. That's their job. I had a stem-cell transplant. In my case the object was to save my life, and the odds of success were not all that good. Did it anyway, because the alternative was obscenely apparent, my days numbered in weeks. Still, I had a choice--cancer patients cancel their therapy almost routinely when it gets to be too brutal. One thing that sticks up for all who look over the edge of the pit is hope. When a hope is all you have left it becomes the focus of your universe, and you milk it for all it's worth. The obverse side of hope is desperation. Driving that desperation is knowing the learning curve (for SCTs or other medical research) is pretty steep. You survive, if you can, until they bring you the magic bullet. You don't know until you try. In David's case he was not yet created when the decision was made. He had no part in the choice. (Take that for what it's worth.)
I'll push my broccoli away without causing the death of a kid in China, thank you. I'm not against tweaking the helix, just the malfeasance regarding supermen, or rich people owning the miracles. So I consider those arguments to be moot. I cannot judge David's parents by the rules of my universe--their hopes, wishes, desires are not mine; I don't believe in their version of god, and except by coincidence I don't subscribe to whatever cultural notions come from their religious grounding.
I would not have chosen to create David. I can't draw a bright line here, so the starving Chinese kids are somehow among the notions that inform my stance. But here's the rub: had I discovered his condition after his birth, I may have told the doctors to bring on the bubble, and get on with the research. When the research failed to save David, I would have donated whatever remained of him for study, hoping to advance their medicine and bring relief to others.
I hope the distinction is clear.
The image of him living his life in a bubble is too powerful to assess. Please consider this: fuck those movies. If your ambient empathy can't help you deal with this, then spend a few days locked in your closet, being fed under the crack in the door. Don't come out until you are painting the walls with shit. Had David been my son I would carry that image to my grave.
posted by mule98J at 9:00 AM on December 10, 2015 [5 favorites]
The doctors will tinker. That's their job. I had a stem-cell transplant. In my case the object was to save my life, and the odds of success were not all that good. Did it anyway, because the alternative was obscenely apparent, my days numbered in weeks. Still, I had a choice--cancer patients cancel their therapy almost routinely when it gets to be too brutal. One thing that sticks up for all who look over the edge of the pit is hope. When a hope is all you have left it becomes the focus of your universe, and you milk it for all it's worth. The obverse side of hope is desperation. Driving that desperation is knowing the learning curve (for SCTs or other medical research) is pretty steep. You survive, if you can, until they bring you the magic bullet. You don't know until you try. In David's case he was not yet created when the decision was made. He had no part in the choice. (Take that for what it's worth.)
I'll push my broccoli away without causing the death of a kid in China, thank you. I'm not against tweaking the helix, just the malfeasance regarding supermen, or rich people owning the miracles. So I consider those arguments to be moot. I cannot judge David's parents by the rules of my universe--their hopes, wishes, desires are not mine; I don't believe in their version of god, and except by coincidence I don't subscribe to whatever cultural notions come from their religious grounding.
I would not have chosen to create David. I can't draw a bright line here, so the starving Chinese kids are somehow among the notions that inform my stance. But here's the rub: had I discovered his condition after his birth, I may have told the doctors to bring on the bubble, and get on with the research. When the research failed to save David, I would have donated whatever remained of him for study, hoping to advance their medicine and bring relief to others.
I hope the distinction is clear.
The image of him living his life in a bubble is too powerful to assess. Please consider this: fuck those movies. If your ambient empathy can't help you deal with this, then spend a few days locked in your closet, being fed under the crack in the door. Don't come out until you are painting the walls with shit. Had David been my son I would carry that image to my grave.
posted by mule98J at 9:00 AM on December 10, 2015 [5 favorites]
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posted by graventy at 7:43 AM on December 9, 2015 [1 favorite]