Chase Britton Doesn't Have a Cerbellum

February 14, 2011 10:14 AM

Chase Britton was born without a cerebellum. And doctors are stunned by his ability to live a relatively normal life for a three year old. Chase was born prematurely and is also legally blind.
posted by zizzle (63 comments total)

"That is actually a fundamental part of the dilemma," du Plessis told WGRZ. "If there was a cerebellum, what happened to it?"

I don't even
posted by thsmchnekllsfascists at 10:18 AM on February 14, 2011

When I was a kid, I remember reading some article in Reader's Digest or something about this guy who had chronic headaches that got worse when he hit puberty. Finally, when he was in his late teens or early twenties, he got referred to a neurologist for testing. When results came back from the MRI or CT scan or whatever they used, he had almost no brain at all, just a sort of thickened twist of extra spinal cord rising up into his skull, surrounded by fluid, and the doctors had no idea how he could even be alive, let alone fully functional (except for the splitting headaches). Brains are weird, man.
posted by infinitywaltz at 10:18 AM on February 14, 2011 [13 favorites]

His teenage theme song!
posted by klangklangston at 10:21 AM on February 14, 2011 [2 favorites]

Probably would have been good to mention the name for this disorder: "cerebellar agenisis." I vaguely remember reading about this in college neurology.
posted by esprit de l'escalier at 10:25 AM on February 14, 2011

Huh. I just hit on Dandy-Walker syndrome last week when I was crawling around Wikipedia for one reason or another. No idea if that relates directly to Chase's condition, but certainly there's precedent for folks to be functional even in the presence of really significant missing brain structures.

Googling for D-W and Chase just to see if it had been mentioned at all, I came across about this brief blog entry from a young woman with D-W.
posted by cortex at 10:27 AM on February 14, 2011

Infinitywaltz, you're thinking of this French case, (another link) which this also reminded me of. Sadly, the news coverage seems mostly interested in making jokes based on the fact that the guy got a job w the French civil service and that his lack of a brain didn't seem to be much of an impediment there. Still, fascinating stuff.
posted by Naberius at 10:27 AM on February 14, 2011 [8 favorites]

Well, my first child didn't have a skull or any part of a brain beyond the rudiments of a brain stem, much less a cerebellum. I guess stories like this are supposed to make me have doubts or feel guilty that I supported my wife's decision not to carry the pregnancy to term now, but I don't.
posted by saulgoodman at 10:29 AM on February 14, 2011 [48 favorites]

Dandy-Walker syndrome

That is something completely different than what I thought it was going to be.
posted by thsmchnekllsfascists at 10:31 AM on February 14, 2011 [9 favorites]

Is it still agenesis if it was there to begin with?

The video, which is really worth watching, goes into greater detail about how there are multiple ultrasounds showing a cerebellum. But it wasn't there when he was born.
posted by zizzle at 10:31 AM on February 14, 2011 [1 favorite]

Sadly, the news coverage seems mostly interested in making jokes based on the fact that the guy got a job w the French civil service and that his lack of a brain didn't seem to be much of an impediment there.

Yeah, after I mentioned the story I was going to say something like, "AND THAT MAN WENT ON TO BECOME PRESIDENT OF THE UNITED STATES IN THE YEAR 2000," but it's such an interesting case in and of itself that I managed to restrain myself. Until now, anyway.
posted by infinitywaltz at 10:33 AM on February 14, 2011 [2 favorites]

>: "Brains are weird, man."

Cognito ergo sum.
posted by three blind mice at 10:34 AM on February 14, 2011

Did the whole thing lyse or what?
posted by Jpfed at 10:36 AM on February 14, 2011

Don't forget this guy.
posted by Solomon at 10:36 AM on February 14, 2011

I thought somebody would have already posted this as a potential theme song, but I guess not.
posted by infinitywaltz at 10:37 AM on February 14, 2011

Our agency is currently working with a family with a daughter who as born with nothing more than a portion of her brain stem. She does not have any functional brain nor even the top of her skull. No eyes, no traditional mouth. She does not communicate. She performs no motor activities other than some basic grasping and spasticity.

The interesting part of this young lady's situation is that she's enrolled in public school. She was never expected to live to a year old, much less to 7. She's kind of a medical oddity. Because she's in school, she's entitled to an education under federal law. The interesting part is that she will never actually learn anything, she won't ever communicate. Her family is fighting for accommodations, the school is resisting.

She raises some very interesting questions about....well, what is a human and when do you have a soul?
posted by TomMelee at 10:41 AM on February 14, 2011 [21 favorites]

I guess stories like this are supposed to make me have doubts or feel guilty that I supported my wife's decision not to carry the pregnancy to term now, but I don't.

Why on earth would it be supposed to do that? The Brittons clearly received rather extensive prenatal testing, and nothing suggests that there was any indication that there would be a problem. Their situation isn't like yours.

It is pretty amazing to realize how much about the brain we really don't understand.
posted by craichead at 10:45 AM on February 14, 2011 [8 favorites]

doctors are stunned by his ability to live a relatively normal life for a three year old

I think that it is incredible how much his family supports him, and I wish him health and happiness and achievement of his potential. But he seems like he is leading a life that is normal for a three-year-old with significant cognitive deficiencies, not a life that is normal for a three-year-old with cognitive skills on par with the majority of his or her age group.

Don't get me wrong--I am astonished and delighted that he is doing so well at a special-needs preschool. It's amazing. I honor the family for committing so much of their energy and resources to supporting him, and I hope he continues to thrive.

I just think it's poor journalism on the part of the article's author to suggest that everything's "normal" and downplay the huge challenges of his everyday existence.
posted by Sidhedevil at 10:48 AM on February 14, 2011 [4 favorites]

The story is very clear that this case is special and unusual and he has severe cognitive problems.
posted by stbalbach at 10:51 AM on February 14, 2011 [1 favorite]

Is it still agenesis if it was there to begin with?

The article says that "Technically, his diagnosis is cerebellar hypoplasia, which normally means a small cerebellum rather than a missing one."
posted by delegeferenda at 10:55 AM on February 14, 2011

Fair enough, craichead. I guess I'm a little oversensitive on the point, because at the time, we had to skulk away like criminals to a different city to have the procedure performed in the middle of the night because none of the practitioners in our own city were willing to perform the procedure due to the hostility of local anti-abortion activists. Also insurance wasn't an option so we had to pay all our medical expenses out of pocket, and ultimately, even the medical staff who eventually performed the procedure treated us as if we had no emotional investment in what we were going through, and in the end, couldn't even be bothered to consult us about what we wanted to do with the remains before discarding them. We never even found out whether we lost a boy or girl--they treated us as the same as they might someone terminating an unwanted pregnancy. This kind of news is exactly the kind of thing that gets thrown in my wife's face by griefers on online support forums. But forgive the derail.
posted by saulgoodman at 10:59 AM on February 14, 2011 [32 favorites]

The interesting part is that she will never actually learn anything, she won't ever communicate. Her family is fighting for accommodations, the school is resisting.

I don't want to feed a derail about a case that we barely know any details about, but why would someone fight for public educational accommodations for a child who can't learn anything? Surely there are other/better arrangements for people in their situation.
posted by hermitosis at 11:01 AM on February 14, 2011 [1 favorite]

The story is very clear that this case is special and unusual and he has severe cognitive problems.

There's a ton more detail in the video, including an interview with his parents stating they have been fully encouraged to start a college fund for Chase.

He has a 60 word vocabulary, which puts him one year behind in standard development verbally, and though his development is delayed, it's definitely ongoing. I wouldn't say these cognitive problems are severe. Severe would be to cease developing or cease learning or do so in a very limited fashion. Chase's development is steady, even if it is slow.
posted by zizzle at 11:09 AM on February 14, 2011 [1 favorite]

I think it was that last line in the article that turned me off. People should not have to experience what saulgoodman and his wife did. I always detest that whole "it was meant to be" attitude but also understand that it helps people deal with the situation.
posted by perhapses at 11:11 AM on February 14, 2011 [1 favorite]

I cannot understand how a child can live without a pons. That's just... crazy. The pons is your basic control over autonomic functions. This is the part of the brain that reminds your heart to keep up with the rest of your physiology (speeding up or slowing down as exercise changes), the part that reminds you to breathe... that's just not in my field of thinking here. It's like having a car that runs pretty well even though the sparkplugs aren't connected to the battery and oh yeah the tranny is just an empty box, no gears in there... yet it runs.

I feel lucky my little guy is as normal as we could have hoped. Nothing scarier than the ultrasound, waiting hopefully for good news and secretly dreading bad, the interminable wait for the birth and I cannot fathom the awful mixture of happiness and fear when something isn't right after all that hope... That looks like one tough kid. I wish him and his family the best.
posted by caution live frogs at 11:17 AM on February 14, 2011 [2 favorites]

I don't want to feed a derail about a case that we barely know any details about, but why would someone fight for public educational accommodations for a child who can't learn anything? Surely there are other/better arrangements for people in their situation.

Sadly, in the US there really aren't better accommodations. If one of the parent's isn't able to stay home from work full time, there's no other even remotely affordable option. Sure, there's some amount of disability available from the government, but nothing like what it takes to actually provide full time care. Honestly, if I were in that situation, I would be fighting for public school inclusion, too. I'm not rich, and as much as it sucks for the school system to absorb the cost, there's not another avenue available to most parents. There used to be options, but the whole shebang was dismantled by Reagen.
posted by stoneweaver at 11:19 AM on February 14, 2011 [3 favorites]

The story is very clear that this case is special and unusual and he has severe cognitive problems.

I read the story very carefully, and if I had been the editor on the story, I would have sent it back because I didn't think that message had been conveyed adequately. Especially after seeing the video.

This is a concern I have with a lot of health journalism in general, that writers (and perhaps editors) are looking too hard for the "feel-good" when writing about people living with profound and life-changing disabilities, and looking too hard for the "never again will he canoe the Boundary Waters" melodrama when writing about people living with disabilities who actually are living as close to a "normal" life as an ableist society makes possible.

Maybe this is just my thing, I don't know.
posted by Sidhedevil at 11:26 AM on February 14, 2011 [4 favorites]

Whoa whoa whoa, this kid is missing a pons too? Damn, does he even have all his cranial nerves? Presumably if he can move his eyes and tongue and such he has some, if not the full compliment.

Cerebellar tissue is really different than other parts of midbrain or cortex so it's hard to even imagine how sensorymotor functions were taken over by areas not even histologically designed for that sort of thing. I wonder if he has a few lonely Purkinje cells somewhere, if they migrated in a disordered way away from what should have been the cerebellum during development and now there are a handful of them hanging out in his occipital lobe, lost and kind of useless.
posted by slow graffiti at 11:29 AM on February 14, 2011 [2 favorites]

I was going to make the same comment as infinitywaltz except I thought it was a 12-year old who played violin, and saw it in National Geographic.
posted by r_nebblesworthII at 11:31 AM on February 14, 2011

Stories like this take on a whole new level of emotional impact once you become a parent.

Man.
posted by gottabefunky at 11:31 AM on February 14, 2011 [1 favorite]

I saw a story quite some time ago about a newborn girl who was thought to have no brain. Her "empty" skull was filled with high pressure fluids. Her parents refused to give up, took her home, and with the help of their friends, manually pumped fluid from her skull round the clock for weeks. It turned out she did have a brain, it had been compressed in development by the fluids into a paper-thin wafer along the side of her skull. It eventually "inflated" to fill about half the normal space, and she had normal intelligence as an adolescent.

I wonder if, in this case too, brain parts have been un-recognizably distorted and compressed.
posted by StickyCarpet at 11:37 AM on February 14, 2011 [7 favorites]

I also wonder if there are other nervous structures that are coping or modifying to accommodate his survival. Nerve cells are clever things.
posted by Baby_Balrog at 11:53 AM on February 14, 2011

Reminds me of this case.

I bet he has a pons, however compressed.
posted by phrontist at 11:54 AM on February 14, 2011

"I don't want to feed a derail about a case that we barely know any details about, but why would someone fight for public educational accommodations for a child who can't learn anything? Surely there are other/better arrangements for people in their situation."

Not really, no. If you enroll the child in school, he or she is entitled to good-quality free care suited to his or her situation for 6 to 8 hours a day, complete with physical, occupational, educational, and other therapies, as well as skilled nursing care if necessary.

If you do not enroll the child in school, well, you can pay for it yourself. There aren't really other programs available.

I live a couple blocks from the district school that houses the "severe and profound" unit within our district of 14,000 students. (And I'm on the school board, you'll probably recall.) I've visited it several times and it's a bright, happy, highly medicalized building attached to a regular elementary school where students who have very few functions spend their days being exercised, fed, stimulated, etc., by highly-educated staff (and badly-educated "personal aides," but most of them are very caring and learn what they can on the job). It's honestly a pretty happy place to visit, and for many of these kids, it's the only option their families have for daytime care and for many of the available therapies.

(My toddler goes with me on visits, with the staff's permission, and he loves visiting this unit because a) it's brightly-colored and very stimulating and b) almost everyone in the unit is in a wheelchair so he spends the whole time pointing at their chairs and shouting "WHEELS! WHEELS!" as cars, trucks, bicycles, and anything else with wheels are pretty much the coolest things on earth. Which perks up the minimally functional kids quite a bit -- many of them like to see babies and toddlers and hear them babble -- and the kids who can drive their own chairs love to show off for him by driving around, which causes him to bust out in squeals of joy.)
posted by Eyebrows McGee at 12:11 PM on February 14, 2011 [17 favorites]

Because she's in school, she's entitled to an education under federal law. The interesting part is that she will never actually learn anything, she won't ever communicate. Her family is fighting for accommodations, the school is resisting.

Schools are warehouses where kids are put.

The parents understand that.
posted by rough ashlar at 12:15 PM on February 14, 2011 [2 favorites]

If you enroll the child in school, he or she is entitled to good-quality free care suited to his or her situation for 6 to 8 hours a day, complete with physical, occupational, educational, and other therapies, as well as skilled nursing care if necessary.

As it should be. It disgusts me that many people view this as the heavy hand of a nanny state, or that people would not want to pay taxes to support this.
posted by three blind mice at 12:45 PM on February 14, 2011 [4 favorites]

To expand slightly: all children in the U.S. are entitled to a "Free Appropriate Public Education" (FAPE), and courts have ruled that the inability to benefit from a FAPE does not rule out your right to one. (Wikipedia covers it reasonably well, though they don't discuss the case where the courts ruled you have a right to an education even if you can't benefit from it.)

I'm proud of our unit and the work that it does, but the law probably needs to recognize that there's "special ed" and then there's "special ed." (We still have to NCLB test the severe-and-profound students, via "alternative assessments," and the law wishes them to be mainstreamed as much as possible, which our unit does, but it's not particularly academically meaningful even though it's probably good for the kids emotionally, both in the unit and in the regular division, helps develop compassion and emotional skills, etc.) The severe-and-profound students really require MEDICAL support, not educational support, and when they age out of the educational system, there's virtually no support for them. It's a half-assed way of providing for these children's needs without having to address it as a society. And having the unit attached to a school is nice, really; I think it's good for both the severe-and-profound and the regular-division kids, it adds some normalcy for the parents, siblings can go to the same school, and it does provide educational opportunities for the severe-and-profound students who are able to take advantage of them. But, really, the unit probably ought to be managed by a local hospital, not a local school district. Our employees do brilliant work with these kids -- the parents can't say enough about how wonderful they are -- but these kids' needs are MEDICAL and our society simply refuses to provide that, so we call it an educational need and pay for it that way.

Okay, stowing my soapbox now.
posted by Eyebrows McGee at 12:49 PM on February 14, 2011 [21 favorites]

I always detest that whole "it was meant to be" attitude but also understand that it helps people deal with the situation.

I get that people are coping with a difficult situation, and I know these aren't philosophers who feel the need to explore all the implications of what they are saying, but I really don't think that mouthing nonsense is going to help anyone in the end.

When they say "Chase was meant to be with us," that pretty strongly implies that the existence of this little boy was mandated by fate/God(s)/the stars who also chose this wonderful loving couple to parent him. I can see why thinking would make you feel good about yourself--I'm such a nurturing person that I was selected to raise this special needs child! But it seems people like this never go on to ask why the powers that be wanted Chase to have this deficiency, or (depending on how TPTB are viewing it) why they wanted a boy in the world with this condition. And are they asking why they were meant to have a previous baby who died at six weeks old? What's the answer for that?

I find my tragedies much easier to deal with if I stop looking for a reason and just say "Bad things happen sometimes. Now we deal with it the best way we can." (I'm also not too fond of the idea that the major events in my life were predetermined, and I'm just a pawn in someone else's cosmic game.)
posted by Pater Aletheias at 12:55 PM on February 14, 2011 [9 favorites]

I am really glad I don't judge the philosophical or religious coping mechanisms used by the caregivers of special needs children.
posted by Leta at 1:13 PM on February 14, 2011 [5 favorites]

Heart. Broken. Must go away from Metafilter now.
posted by gagglezoomer at 1:28 PM on February 14, 2011

See Josh, I TOLD YOU I could live without you!
posted by Potomac Avenue at 1:38 PM on February 14, 2011

Am I sending too many emails, Pete?
posted by klangklangston at 1:49 PM on February 14, 2011

[few comments removed - absolutely knock off the "popcorn" talk. You do not have to participate in this thread. MetaTalk or email are your options.]
posted by jessamyn at 2:22 PM on February 14, 2011 [1 favorite]

I saw a story quite some time ago about a newborn girl who was thought to have no brain. Her "empty" skull was filled with high pressure fluids. Her parents refused to give up, took her home, and with the help of their friends, manually pumped fluid from her skull round the clock for weeks.

...
posted by threeants at 4:20 PM on February 14, 2011

I don't want to feed a derail about a case that we barely know any details about, but why would someone fight for public educational accommodations for a child who can't learn anything?

Because they are still desperately trying to maintain the fiction that their brainless child is still a child, in any meaningful sense of the word. This is a problem with the sort of joe-sixpack metaphysics that being "human" boils down to having the right set of DNA and a beating heart. It completely papers over the messy, horrible truth that our "souls", whatever they may be, are based in a physical substrate, and as that substrate is damaged or destroyed, so are we

Me without my brain isn't me. This child without a brain isn't anyone
posted by crayz at 5:11 PM on February 14, 2011 [2 favorites]

I am really glad I don't judge the philosophical or religious coping mechanisms used by the caregivers of special needs children.

Look, obviously if I were sitting down and talking with Chase's parents about this situation, I'd tiptoe carefully around the edges of this topic, but it shouldn't be off limits to discuss amongst ourselves on Metafilter the fact that their coping mechanism (if that's what it is--they might just think that's the sort of thing you're supposed to say in this circumstance) is deeply flawed and won't last more than a few minutes of critical reflection.

If it were just as simple as "well, whatever works for people is fine," that would be one thing. But what people believe have consequences. I've got a long list of people in mind who start off with this kind of touchy-feely "God picked us for this mission" attitude, and I'd say 65% of the time they just roll through like praising God for whatever happens "I just thank the Lord for my breast cancer--it's really taught me to focus on the important things"* and 35% of the time it turns into "what did I do wrong that God did this to our boy?" or, worse, "what did YOU do wrong that God did this to our boy?" I've been in the hospital room when a couple was trying to figure out which one of them let God down because their baby boy was born with a life-threatening condition, and it's not a lot of fun. Chances are Chase's parents will rock along just fine because (1) most people do and (2) Chase's condition, while intriguing, is a lot less tragic than a bunch of things that could have happened to him.

I'm not coming at this without some background in area. I've got three theology degree and two decades of ministry experience, including a stint in hospital chaplaincy. And one thing I've learned is that sooner or later, how people frame these things is going to matter. Comforting nonsense might work for a year or a decade, but if they ever start asking the follow-up questions, things can tailspin in a hurry. The best time to think through this stuff is before tragedy strikes, which almost no one does. Then when the tornado hits, they are left with whatever their implicit, uncritical default philosophy was, and at that point, no one wants to prod them toward something better because "well, who am I to judge someone else's comfort mechanism?" That might seem like the nice, polite, respectful thing to do, but--and I'll reiterate that approach and timing is critical--leaving people to lean on illusions is a dangerous stance to take. At the very least, gently introduce other ways of thinking about things so there is a new framework to cling to when the illusion falls apart.

You might also be surprised at how many folks are just plain relieved to have someone give them permission to just say "this sucks" instead of "this happened for a reason." Sometimes people say that because they think it's what people expect them to say, and if their friendly neighborhood theologian strongly hints that it's okay to be distressed at their situation instead of acting grateful that God chose them for this wonderful mission, we can start to work through the real, gut-level honest emotions that the platitudes were covering up all along.
posted by Pater Aletheias at 5:29 PM on February 14, 2011 [47 favorites]

There's another famous case about a guy with a 126 IQ and "virtually no brain". [link to first page of Science article, subscription required for full article].

Previously, via metafilter being cited as a reference in a wikipedia article about the author of the Science article.
posted by ecco at 5:37 PM on February 14, 2011

I am really glad I don't judge the philosophical or religious coping mechanisms used by the caregivers of special needs children.

I have to assume you don't know that Pater Aletheias is or has been a hospital chaplain?* I agree with him that people can be terribly misled by "everything's going to be OK because $Deity will fix it," sometimes to the point of seriously endangering their child.

Of course, I don't think that that's what's going on with this family--it seems very clear that they are providing their son with lots of focused therapy and attention appropriate to the issues he is living with, and he is doing amazingly well. Yay for them.

But one challenge with the framing of serious disability narratives in the public discourse as "$Deity sent these disabilities as a blessing" is that they can add fuel to the fantasies of people like the person (and I am not going to link to her blog because it's a horrible, sad story) who brought her anencephalic child home from the hospital and blogged about how the child "knew her Mommy" and "smiled" and meanwhile from every picture it was clear that this terribly terribly compromised little body was just. not. there. and my only hope was that there were no pain receptors there to respond when she wrenched it around into little clothes and hats for pictures on the blog because otherwise that was nothing but cruelty to a living, though not thinking, organism. If that person had had access to a community that supported the "sometimes terrible things just happen" narrative, she might not have spent those days in denial, and in manipulating her child's body to support the parody of parenting that she felt the need to perform.

*On preview: I see that PA has shared that aspect of his work already (boy, I have been dithering with this!) Not to get all argumentum ad verecundiam but I think hospital chaplains have a lot of data with which to assess this stuff. Not judge, but I didn't see judgment there.
posted by Sidhedevil at 6:59 PM on February 14, 2011 [3 favorites]

There's another famous case about a guy with a 126 IQ and "virtually no brain".

This sounds like the beginning of a horror movie. Guy wakes up a bit groggy, goes to the doctor who tells him...he has no brain. Cue zombies!
posted by miyabo at 7:23 PM on February 14, 2011

I'm not a chaplain, or any sort of clergyperson. I was not raised within a religious tradition; I do not attend church now. I have no religious baggage of any kind because I have no religious background of any kind. I have no axe to grind.

But what I know about faith is this: it's not a game of logic. Religion may be, but faith, that sort of thing that can sustain even the staunchest atheist with nothing more than the maxim of "things will get better"- that's not the sort of thing anyone can parse, theological training or no.

I'm sure I'll be accused of oversimplifying here, but anybody who truly accuses himself or anyone else of offending a god who then wreaks havoc on a child as punishment... well, again, I just want to reiterate that this is supported by no organization that I know of, just my own pragmatic self... I would submit that such a god is not worth worshiping.

There is an adult special needs child, one with needs similar to Chase's, within my extended family. My aunt and uncle have cared for my cousin with kindness, love, intensity, dexterity, and humor for over twenty years. They think their son was meant to be with them. That's what they say, anyway. They know they will care for him for the rest of their lives. This coping mechanism has kept them a happy family for a couple of decades now.

Look, biology is amazing. Consciousness even moreso. As is the capacity for people to love and sacrifice for one another. That's what I got out of this story. And I think it's a little sad to drag religious or quasi-religious criticisms into a story about a child who is living without a pons and has a disappeared cerebellum. That is so incredible all on it's own that it's enough for me to thank his parents that he exists, even if all it means that we get to learn something from him. So whatever his parents need to do to give not just a gift of life to their son, but a gift of knowledge to science and humanity, even if it doesn't hold up to critical thought, is not something I want to, or feel qualified to, judge. I feel that my role is simply to thank them, and offer my awe and appreciation.
posted by Leta at 7:39 PM on February 14, 2011 [2 favorites]

Pater Aletheias: I wish I could favorite your last comment a million times.
posted by saulgoodman at 7:51 PM on February 14, 2011 [2 favorites]

And I think it's a little sad to drag religious or quasi-religious criticisms into a story about a child who is living without a pons and has a disappeared cerebellum.

I am religious, personally. I cannot speak for whether Pater Aletheias self-identifies as religious at this moment in time, but I know he has had years of experience as a provider of religious support to people.

But here's the thing: I self-define as an observant Christian, and I think that public framing of disease and disability narratives using Christian frameworks presents a real problem in the US today. I am not faulting the family of the child with no cerebellum for whatever they say to each other, or for what they say to reporters from AOL, because those people are amazing.

Here's what I fault--the reporter. The editor. The public discourse.

It's not "dragging" something into the story when it's in the story, and in the context of how the story was framed. It's not "dragging" something into the story when it's in the public discourse.

Identifying an issue with how a media story is being framed is not attacking the people involved in the story. Those people are certainly too goddamned busy to read this thread, because they have two kids to raise, one of whom faces enormous physical and cognitive challenges, and more power to them.

But some of the people reading this are going to write about other families facing major disabilities, and maybe they'll consider whether or not to go along with the cultural norm of framing it as a "Christian trial." So I think it's a very worthwhile discussion to have.

To be frank, your post read to me as condescending. "It's a little sad" to talk about this issue? I find it a lot sadder to think about children who don't get appropriate care because the ways in which the US's public narrative of illness and disability is hijacked by fairly unreflective forms of Christianity (or, for that matter, unreflective forms of New Age thinking, as one sees with anti-vaxxers).
posted by Sidhedevil at 9:27 PM on February 14, 2011 [3 favorites]

I am not faulting the family of the child with no cerebellum for whatever they say to each other, or for what they say to reporters from AOL, because those people are amazing.

The parents are amazing, I mean. The thing is that the reporter chooses which statements to include in an article, and where. And then the editor chooses which statements to keep and which to cut, and whether to rearrange the reporter's original structure.

As a journalist and editor myself, I know that every reporter imposes a narrative structure on their interviews and experience of subjects. I think the narrative structure of "this is all part of God's plan" needs to go away from articles about health issues in the secular media.
posted by Sidhedevil at 9:31 PM on February 14, 2011 [2 favorites]

Now I guess I'll have to tell 'em
That I got no cerebellum

Ramones, "Teenage Lobotomy"
posted by telstar at 11:32 PM on February 14, 2011

Already got there, Telstar.
posted by klangklangston at 11:43 PM on February 14, 2011

"You might also be surprised at how many folks are just plain relieved to have someone give them permission to just say "this sucks" instead of "this happened for a reason." Sometimes people say that because they think it's what people expect them to say, and if their friendly neighborhood theologian strongly hints that it's okay to be distressed at their situation instead of acting grateful that God chose them for this wonderful mission, we can start to work through the real, gut-level honest emotions that the platitudes were covering up all along."

"You know, Job is one of the most challenging books in any religious tradition…"
posted by klangklangston at 11:45 PM on February 14, 2011

I guess stories like this are supposed to make me have doubts or feel guilty that I supported my wife's decision not to carry the pregnancy to term now, but I don't.

Sounds like someone has some baggage. That story was a puff piece that was supposed to give people hope about situations that seem impossible. I didn't see any pro-life political message in it.
posted by AndrewKemendo at 1:08 AM on February 15, 2011

I daily thank the deities of all denominations that my two children were born with all fingers, toes, etc. intact. The fact that my two have made it past the age of 10 without hospitalization or some long-termed ER time just baffles me. And I am so very grateful.

I'm heartfelt sorry for what other parents have had to deal with. I know I'm so damned lucky in that regard. I know I am. I'm spoiled in that way.

saulgoodman, I've read your history here and it brings me to tears. Had I faced the same information, I would have done the same thing.

I'm lucky.

I'm lucky enough to not know, but I understand that losing a child can be one of the most profound losses ever. More than a parent. More than a spouse. More than a sibling.

You don't expect to outlive your children. Ever. Often even when they aren't born yet.

If this little guy can get past this huge thing, well, that's great in so many ways. It could very well be what some call a miracle. I personally don't believe in miracles, so maybe he's just a fluke of science.

Thing is... I don't really care if he's a miracle or a fluke. He's an amazing instance.

Keeping going, little guy, in spite of the challenges.
posted by lilywing13 at 1:33 AM on February 15, 2011 [1 favorite]

This conversation isn't going the way I had hoped.

I posted this story because holy high water hell! There is a three year old boy out there without a cerebellum. WITHOUT A CEREBELLUM!

He is doing things EVERY DAY that neuroscience says he shouldn't be able to do. He is challenging every belief system that exists about the brain, how the brain works, and how the brain adapts.

He is baffling top research neuroscientists and psychologists.

He is LIVING a life he shouldn't be living. LIVING! He has a high quality of life. He has words. He talks. He manipulates physical objects. He can walk. He can do all these things that he shouldn't be able to do at all.

So he's doing them a bit later. So he has some delayed development. But he's developing and growing and changing WITHOUT A CEREBELLUM!

It's clear that Chase has a lot of love and a lot of support, and his parents seem well grounded, thoughtful, and caring in their choices for Chase. Keep in mind, they had him evaluated well after he was born when they suspected he wasn't developing at a normal rate.

And then they learned he doesn't have a cerebellum and the scientific world explodes around them.

Their son is special. He's not just special needs. By all accounts, he really shouldn't be here, and he really shouldn't have as amazing a quality of life as he does. But he is. And he's happy. And he's growing and living his little life rather happily.

WITHOUT A CEREBELLUM!

Regardless of anything else, regardless of whether Chase's family is in some kind of deep denial about his condition, which I don't think they are given the circumstances, Chase's story is amazing. His life is still amazing. He is missing a huge part, a fundamental part of what makes the body and mind work the way it is supposed to. And yet he's able to do most of those things he shouldn't be able to do.

That's amazing!

I wish this thread had focused more on those points than on the points that Chase has a more needs than the average three year old, that Chase's parents are in some kind of denial about his condition, and all the other points that focus on a really negative side of this story under the guise of realism.

This is a story about a three year old without a cerebellum confounding and challenging the foundations of our understanding of the brain. He is a freaking amazing little dude for that alone. And his parents and brother are lucky to have him as he is lucky to have his parents and brother.
posted by zizzle at 6:06 AM on February 15, 2011 [5 favorites]

Well, unfortunately, there's no guarantee what you'll end up with when you post to the blue. That's a feature though, not a bug. In fact thread-sitting (i.e., trying to sculpt the direction of your own fpp) is usually looked upon pretty uncharitably around here. And rightly so.

For my part, I apologize if my remarks derailed a discussion of what you understood to be the most relevant points of this story. As I said, I had a knee-jerk reaction. But I'd also suggest that it isn't necessarily a bad thing when others around you offer differing views of their own, even (and sometimes even especially) if those views don't necessarily agree 100% with your own.

In this case, Yay, for Chase! And yay for his mommy and daddy. But most of all, good luck to them. We're all lucky to have each other. But life over the long term--even for people who aren't struggling with serious medical challenges or similar difficulties--is never simple, and just keeping a sunny outlook doesn't in the least guarantee that Chase and his parents are going to live happily ever after once we've turned our attentions away and moved on to whatever latest story might inspire, confound or disgust us next.
posted by saulgoodman at 12:31 PM on February 15, 2011 [1 favorite]

I went to school with a girl named Sarah Bellium and only just now wondered if her parents did that on purpose.
posted by klangklangston at 1:38 PM on February 15, 2011 [2 favorites]

Zizzle, you're never going to get much traction on MetaFilter with anything that calls into question the current scientific orthodoxy.

It does make one wonder how big a role natural selection plays in human evolution when the huge heads we carry around, which caused so many deaths in childbirth in the millenia before we figured out how to do C-sections, appear to be unnecessary. Why, then, don't modern humans all have little pin-heads? (Their "gray aliens" would look like us!)
posted by Crabby Appleton at 11:08 AM on February 16, 2011

Unnecessary? Perhaps yours is.
posted by klangklangston at 1:00 PM on February 16, 2011

See, Zizzle?
posted by Crabby Appleton at 2:30 PM on February 16, 2011