We walk by faith, not by sight

April 21, 2009 2:11 PM

It is apparent to me that Faith does have a brain, despite what the doctors have said. Even though it is generally believed that anencephalic babies are blind, deaf, and cannot feel touch or think... I don't believe that. Not at all. So little is known about the human brain and the only one who really knows what's going on is God. I truly believe that Faith can think and can feel my touch and hear my voice. I can't prove it but I feel like I just know. [images may be disturbing]
posted by Joe Beese (253 comments total)

I saw this on reddit and watched the videos. I really feel sorry for the mother, it really sucks that so many people there were attacking her.

I agree that very little is known about the human brain compared to all that there is to know about it, but enough is known to know the minimum requirements are for hearing, feeling or 'being there'. Even flatworms show more complex reactions than the baby, even the paramecium I was looking at under my microscope the other day has a more complex behavior.

The good think is that Faith does not have enough of a nervous system to be in any kind of pain. Good name choice there.
posted by dirty lies at 2:18 PM on April 21, 2009 [2 favorites]

.

(not sure if that's appropriate for someone who's still alive, but I really have no words.)
posted by Halloween Jack at 2:20 PM on April 21, 2009 [1 favorite]

It is mostly irrational to believe what she believes, but there is something transcendent (and ineffably sad) about such intense and unremitting love enduring despite the lack of any response whatsoever from Faith.
posted by Falconetti at 2:21 PM on April 21, 2009 [10 favorites]

The only error here is the false information that doctors are being taught about anencephaly in med schools. They ought to open their minds and their eyes.

lol :(
posted by Optimus Chyme at 2:24 PM on April 21, 2009 [1 favorite]

I can't wait to add zingy captions to the photos and deploy them in my next internet argument.

(As I type that, Metallica's "Am I Evil" had just started playing.)
posted by klangklangston at 2:26 PM on April 21, 2009

I'm sure there are a litany of incitement things I could say here, but I can only think of the following:

Why do I constantly ignore the IMAGES MAY BE DISTURBING warnings when I find real life disturbing images to be rather disturbing? Seriously. I never learn.
posted by Lacking Subtlety at 2:27 PM on April 21, 2009 [5 favorites]

inciteful*
posted by Lacking Subtlety at 2:28 PM on April 21, 2009

For Sale: One Baby Mozart, never used.
posted by klangklangston at 2:28 PM on April 21, 2009 [7 favorites]

Seven words are too many to
posted by dersins at 2:31 PM on April 21, 2009

What in the heck is the point of this post?
posted by MarshallPoe at 2:35 PM on April 21, 2009 [3 favorites]

WE CAN'T ALL BE HEMINGWAY!
posted by klangklangston at 2:35 PM on April 21, 2009 [1 favorite]

Some of you may be jumping to conclusions.
posted by Crabby Appleton at 2:37 PM on April 21, 2009 [2 favorites]

You people posting vile things on the internet about my daughter, you are IN for it. There is a place for people with such hatred and perversion in their hearts, and believe me, it's not a place where you want to go. But that is where you are heading. In a nutshell, Jesus is your only hope. Or you're in for a good long (and well-deserved) burning.

Why do so many Christian people get off on contemplating endless shrieking agony for people who might disagree with them or who say unkind things about them?
posted by longsleeves at 2:38 PM on April 21, 2009 [71 favorites]

posted by MarshallPoe What in the heck is the point of this post?

You should feel bad.

Gabba gabba, we accept you, we accept you, one of us.
posted by mattdidthat at 2:39 PM on April 21, 2009 [4 favorites]

There is a place for people with such hatred and perversion in their hearts, and believe me, it's not a place where you want to go. But that is where you are heading.

That place is Fark.
posted by M.C. Lo-Carb! at 2:39 PM on April 21, 2009 [61 favorites]

"What in the heck is the point of this post?"

Concern trolling and/or LOLXTIANS.

Or perhaps the transcendent beauty of watching an inarticulate person try to deal with a profound tragedy through the most superficial mass medium available, which leaves us all caddish, voyeuristic or glurging with public sympathies that will never be seen by their recipient (and are worth only slightly more than public prayers).

Or it could be a cynicism litmus test. Really, why choose just one?
posted by klangklangston at 2:40 PM on April 21, 2009 [48 favorites]

It is mostly irrational to believe what she believes, but there is something transcendent (and ineffably sad) about such intense and unremitting love enduring despite the lack of any response whatsoever from Faith.

It's probably this exact drive, to care for children regardless of how 'defective' they may appear to others, that allow mutation and evolution to happen.

The first truly human baby probably looked a little strange to his or her mother.
posted by Malor at 2:40 PM on April 21, 2009 [6 favorites]

When you know EMTs, doctors, and nurses, you hear a lot of horror stories.

My friend, M., worked in a Pediatric Intensive Care Unit. They had an anencephalic baby. The parents were struggling with a decision: do we donate the organs while they are still in relatively good shape, or do we, although we are told that we have no chance, undertake the long struggle? They had made love, they had a pregnancy, a delivery, and a baby. Ten fingers and ten toes and pretty much everything you would expect, unless you went around the back and looked at this ... space. It was a space where you would expect a soft spot and the source of fresh baby smell. That was not what they got. Every other cue that, hey, we have a baby! was present.

The nurses there worked in pairs on that shift and turned the lights off on the ward, as it was night. Later, they would use a flashlight to check on the patients without waking them. M.'s partner that night called to her: "Could you come here for a second?"

She came in to the dark room, only to find her partner holding her flashlight behind the baby's head. A red glow emitted from the baby's mouth. That was the beam from the flashlight coming through the thin red layer of tissue, unimpeded by any significant brain matter. It was a vulgar thing to do. At first, she was angry at her partner, then she stopped. There wasn't anyone to make fun of, and there wasn't going to be, ever. She later said to me, "That's when I knew that, although it had a face, it's not a baby or a person. The fact that it had a face just made me act like it was a baby." It was a vulgar thing to do and it jarred her from the kind of trance you can get around babies.

These evolutionary responses have helped us for so long, driving us to do just about anything physically possible against the longest of odds, that we might survive and have offspring who strive just as hard as we do; we can be helpless against these very instincts and spurs when they take us into such hopeless places.
posted by adipocere at 2:41 PM on April 21, 2009 [193 favorites]

argh -- 'allows'. Lrn2prufreed.
posted by Malor at 2:41 PM on April 21, 2009

("Glurging"?)
posted by nebulawindphone at 2:42 PM on April 21, 2009

There is absolutely nothing of any redeeming value whatsoever in this post. Sorry.
posted by Marisa Stole the Precious Thing at 2:44 PM on April 21, 2009 [2 favorites]

("Glurge")
posted by muddgirl at 2:44 PM on April 21, 2009

Glurge.
posted by klangklangston at 2:46 PM on April 21, 2009

Glurging

I would have said "glurgish", but, yeah, I guess that would be a participle formed from treating "glurge", a perfectly good internet word, as a verb. It's usually a noun, so a better adjectival form might be glurgeful?
posted by mr_roboto at 2:50 PM on April 21, 2009

Or glurgy, yeah. Maybe we can use glurgy to describe the material itself and glurgeful to describe the state of mind it evokes?
posted by mr_roboto at 2:52 PM on April 21, 2009

It is mostly irrational to believe what she believes, but there is something transcendent (and ineffably sad) about such intense and unremitting love enduring despite the lack of any response whatsoever from Faith.

I'm really stunned by all the mocking going on in these comments.

Against my better judgment, I clicked on the blog. So this mother has this baby -- Faith -- this living, breathing baby -- that she loves. She talks about the baby gaining weight. I watched the video - clearly the baby moves under her own power, even if she can't actually be responding to stimuli. This mother has learned to change the dressing on Faith's head -- something I'm not sure I could bring myself to do.

My god, this woman is brave. Her baby is alive, and has stayed alive for two months. Two months of fear and joy and love.

As a parent, all you can do is love your child and hope. I defy any of you to tell me what else she should do? Should she smother this living creature? Let the baby die by not feeding her?

This is her baby. Her baby daughter. She's doing what she can, enjoying what times he has with this tiny girl. Can the girl tell what is happening? Probably not. But the human body is a strange and mysterious thing. I have to believe that, at a minimum, this tiny helpless creature is not in any pain, is not suffering. There are millions of children around the world today who cannot say the same thing.

So don't mock this mother. She's doing the brave, hard thing. Let her enjoy the time she has. She's knows its short.
posted by anastasiav at 2:54 PM on April 21, 2009 [78 favorites]

It is mostly irrational to believe what she believes, but there is something transcendent (and ineffably sad) about such intense and unremitting love enduring despite the lack of any response whatsoever from Faith.

It's just evolution at work. Macaque and baboon mothers will keep nursing and carrying dead infants for days and weeks. Some have been observed to carry dead infants for months. It doesn't invalidate her grief, but it doesn't spiritualize it, either.
posted by Blazecock Pileon at 2:55 PM on April 21, 2009 [25 favorites]

I have to believe that, at a minimum, this tiny helpless creature is not in any pain, is not suffering.

There is literally no one in this thread who disagrees with you.

There are millions of children around the world today who cannot say the same thing.

Yes, because they have brains and can feel things. I don't understand - are you saying that anencephaly is a gift?
posted by Optimus Chyme at 2:59 PM on April 21, 2009 [3 favorites]

I don't see much mocking in the comments so far, anastasiav. Much more space has been devoted to questioning the motives of Joe Beese.
posted by muddgirl at 3:00 PM on April 21, 2009 [1 favorite]

It's incredibly sad. There's a story similar to this in Ina May (The Farm) Gaskin's book about birthing. There's something pure about nurturing a baby that has no higher functions. I imagine most such infants are gently killed at birth; it seems reasonable not to want to do that.
posted by theora55 at 3:01 PM on April 21, 2009

Flagged. Joe, wtf, over. This isn't cool, at all, in any aspect.
posted by mark242 at 3:03 PM on April 21, 2009

theora55 - I'm not a doctor, but I believe that in cases where anencephalic babies are not terminated before birth or stillborn, then the course of action taken in the posted blog is rather typical - issue a DNR order and provide immediate physical care such as clothing, sustenance, or perhaps a respirator.
posted by muddgirl at 3:05 PM on April 21, 2009

It's just evolution at work. Macaque and baboon mothers will keep nursing and carrying dead infants for days and weeks. Some have been observed to carry dead infants for months. It doesn't invalidate her grief, but it doesn't spiritualize it, either.

For whatever evolutionarily-derived reason, I still marvel at this, which is what I was trying to express. It makes it even more resonant for me to know that these sort of acts are embedded in us.

BTW, the great novel A Personal Matter by Kenzaburo Oe, explores a situation similar to this.
posted by Falconetti at 3:09 PM on April 21, 2009

Aren't anencephalic infants potential organ donors?
posted by mr_roboto at 3:09 PM on April 21, 2009 [4 favorites]

It makes it even more resonant for me to know that these sort of acts are embedded in us.

If we're all (humans and otherwise) programmed to do something, I sometimes wonder if that lessens the experience. Perhaps, to some degree, we're not truly free to grieve someone's loss on its own terms, but are instead wired to "suffer-on-autopilot", somewhat. I'm not sure how I feel about that, or how that changes how I should feel about this.
posted by Blazecock Pileon at 3:20 PM on April 21, 2009

This is such an unspeakably tragic predicament. Loss is one thing, but to have that loss dependent on your own existential views. Can you blame her for choosing to keep her baby alive? To admit the truth to herself may be tantamount to killing her own child.
posted by Sova at 3:20 PM on April 21, 2009

It's surprising to me that the baby could have survived two months with no brain. Is it on constant life support, or is it somehow able to control bodily functions? (This is a serious question, I don't know much about anencephaly.)

This story reminds me of Mike the Headless Chicken, which may be an awful comparison, but brings up similar questions about the minimum amount of brain tissue needed to control the body.
posted by null terminated at 3:32 PM on April 21, 2009 [1 favorite]

A little surprised at some of the reactions (not necessarily here). All I could feel on reading this was that it was so very sad.

I largely feel the same way as anastasiav, but I won't lie: her message to 'the haters' really made me cringe.
posted by six-or-six-thirty at 3:33 PM on April 21, 2009

You gotta have Faith a faith a faith...
posted by fixedgear at 3:37 PM on April 21, 2009

You know, parents of newborns* (like me) should probably stay away from stories like this. When will I learn?

* Or maybe that's just really wussy parents of newborns (again, like me)
posted by Never teh Bride at 3:43 PM on April 21, 2009 [1 favorite]

This is so intensely private, so far beyond the realm of things Other People Should Judge, it's unseemly to be looking at it.
posted by A Terrible Llama at 3:49 PM on April 21, 2009 [29 favorites]

Some of you may be jumping to conclusions.

Those cases do not describe anencephaly. The cases you linked all have forebrains that have suffered profound neuronal and axonal destruction as a consequence of hydrocephalus. The key point is that there is a brain there.

The baby in question has no forebrain. Zero. The baby will never ever experience consciousness because the part of the body where consciousness resides is absent. She has absolutely no experience of the outside world and never will. This is absolute. The concept of personhood is completely absent in an anencephalic baby.

There will be no miracle. It is indeed tragic.
posted by tenmuses at 3:50 PM on April 21, 2009 [9 favorites]

My first reaction was that carrying to term was sort of a selfish thing to do, when her child's organs could have been donated to other infants in need who have the potential to have otherwise 'normal' lives. If she's pro-life and all.

Then I decided that if one is going to be pro-choice (which I am) then certainly the choice to carry to term and deal with the consequences of that has to be respected. Not admired or denigrated, just respected.

The attitude in her writing vis a vis atheists and non-believers is inflammatory and unnecessary, but certainly not unique to her. And honestly, if I were that young and dealing with something this difficult as a single parent, I have no idea how I'd react, but I don't think I would be entirely level-headed.
posted by Barking Frog at 3:56 PM on April 21, 2009 [14 favorites]

I have no idea how to process this. If the child had been born dead, that's something this woman could have gone on from. I think it's very possible she's gone somewhat crazy, and that doesn't surprise me at all. I don't know what she should be doing now. This is horrible.
posted by kittens for breakfast at 3:57 PM on April 21, 2009 [1 favorite]

She has a living doll. It has the same capacity for thought as one.
posted by dibblda at 3:59 PM on April 21, 2009

Why do so many Christian people get off on contemplating endless shrieking agony for people who might disagree with them or who say unkind things about them?

I think this is....understandable.

Look. This is a young woman (she's only 23), who's just had a baby (and had the resultant hormonal cock-up to end all cock-ups) after hearing her baby may not ever be the kind of "normal" baby she expected, and every day for this poor -- you know, I was going to say "poor woman", but I'm going to use "poor girl", because sweet Jesus, 23 is SO young -- every day for this poor girl is a grind of complex medical procedures to keep a much-hoped-for daughter alive, and hanging over all of it is the constant fear that maybe it won't work, that maybe tomorrow she'll wake up and go to the crib and the baby will be dead -- every new parent feels that way, but this is justification for that fear times TEN in this case, and she knows all of that and is carrying all that around on 23-year-old shoulders and she's a single mother on TOP of that, and this is costing goodness KNOWS how much, and....

....and you know, I think if I were in her shoes and I heard people saying unkind things about the choices I'd made and blaming it on one of the few good things I had available to me in my life, I'd be saying some pretty damn nasty things in response to them myself. The only difference between her and me is that I wouldn't be saying 'you're going to be burning in hell," I'd be saying "fuck off and fucking die you fucking fucks".

So pretty much, "imagine your torment" is just because she can't say "fuck you, you fucking fuck," and you know, I'm going to cut her some slack for that.
posted by EmpressCallipygos at 4:07 PM on April 21, 2009 [76 favorites]

null terminated, Mike is the first thing which came to mind as well but I'm glad it's you who posted the link and not me. That being said, this seems like it's a statistical outlier anencephalic case, where there is enough of the brain stem to sustain life.

I can't help but think of the science fiction trope of cloned, mindless bodies which are grown for spare parts by societies with the technology to do so. The clones almost always depicted as whole-bodied with no apparent defects. Seeing this baby makes me think that engineering anencephalic conditions similar to this baby would address the philosophical implications of "killing" a spare parts clone and would avoid any of the messy uprisings which could come about by growing full-bodied clones.

But I feel for any parent of an anencephalic child. Frankly, I say let the lady deal with her baby and her grief in the way that she sees fit. There's nothing to be gained in passing judgement on her.
posted by ooga_booga at 4:07 PM on April 21, 2009 [3 favorites]

How many people are hoping and/or praying the baby dies soon? Hopefully more so that the mother will have some closure rather than just because we're all squicked out by the random and arbitrary abnormalities that the universe throws our way.
posted by BrotherCaine at 4:14 PM on April 21, 2009

Christing fuck, she's 23 and has to deal with stuffing the eyeballs back into the head of her brainless baby.

If that's not the nightmare to end them all, I don't know what is.

I think I need to be away from the internet for awhile.
posted by Space Kitty at 4:14 PM on April 21, 2009 [10 favorites]

Ah, I envy the innocence of those of you who before now didn't know of the existence of anencephaly/dead baby sites. This is just the tip of the feculent iceberg. This is a whole net.subculture. Most of them are choked with ads, particularly casino banners for some reason. They are almost always written at a grade school level at best, with copious references to Jesus. There are even, believe it or not, "top 20 dead baby sites" sites. I saw one once where the mother kept the body around for what appeared to be at least a few weeks, dressed it up in a little hat, and took pictures of her obviously horrified other children holding it. This is one of the aspects of the really dark side of fundamentalist Christianity and anti-abortion fanaticism. Now you know, and you can't un-know.
posted by DecemberBoy at 4:21 PM on April 21, 2009 [18 favorites]

This is so intensely private, so far beyond the realm of things Other People Should Judge, it's unseemly to be looking at it.

Agreed, but given that, it's maybe even more unseemly to post it on the internet. My mind is gnawing on the idea of discretion today, after reading this Op-Ed on internet oversharing.

Reminds me of something my musty old 18th century lit professor used to say. "Nowadays everyone wants to share everything they have inside. They want to see and show everything. But mostly what we have inside is ugly...it's guts."

Full disclosure: I didn't read the article, because I don't want to know. There are tragedies in this world that, if you're lucky enough to avoid them, are better left unseen.
posted by erinfern at 4:23 PM on April 21, 2009 [7 favorites]

What in the heck is the point of this post?

The point is that it is a pretty fucking remarkable blog. When my boy was born 24 hours ago I understood for the first time that having a child engenders an undeniably powerful instinct to love and care for this creature, without reservation or need for self reflection, an instinct that I, a doctor who has cared for hundreds of sick children and their parents, was not prepared for. It's a primeval irrational thing.

Take one single 23 year old mother, give her a fetus with a monstrously hopeless deformity, add Jesus. Start a reasonably well written, intimately personal blog (with pictures!). It's depressing and crazy, yes. I certainly don't sympathize with her decisions and I hate the thought that other children might be worse off because of her decisions. But it's damn remarkable.
posted by Slarty Bartfast at 4:27 PM on April 21, 2009 [3 favorites]

the best way to walk and carry soup without spilling is to not look at the soup
posted by kitchenrat at 4:29 PM on April 21, 2009 [2 favorites]

When my boy was born 24 hours ago I understood for the first time that having a child engenders an undeniably powerful instinct

Oh christ, I hereby promise never to play the "I'm special because I have a child" card again. I'm gonna go change a diaper right now.

This is absolutely a good FPP.
posted by Slarty Bartfast at 4:32 PM on April 21, 2009 [2 favorites]

There are even, believe it or not, "top 20 dead baby sites" sites.

Did I really just google "top 20 dead baby sites"? What the fuck is wrong with me?
posted by kuujjuarapik at 4:36 PM on April 21, 2009 [8 favorites]

Stop calling it a "baby". The word "baby" is loaded and makes a person think "Hey, tiny person!" This isn't a person in any sense of the word, never was, and will never grow up to become one. It is a skin-sack of fluid and organs and it is going to expire. It should have been harvested at birth. Resources - time and energy - are being channeled into keeping a piece of meat respirating. It's not tragic, it's just pathetic.
posted by turgid dahlia at 4:36 PM on April 21, 2009 [13 favorites]

Why do so many Christian people get off on contemplating endless shrieking agony for people who might disagree with them or who say unkind things about them?

It's a form of emotional abuse that they had inflicted upon them from an early age and from people they were taught to trust. I experienced it in a rural parochial Catholic school. Other people experience it from parents and elders. The possibility of being condemned to hell brings them very real pain, and they believe that it should bring pain to those whom they condemn. It's the currency or source of what little control they feel they can exercise on those who present them with vexing situations that they have no other means of handling. When they offer the symbol of "Jesus" as the only means of salvation, they are really saying, "If you place yourself within my power, I will no longer inflict the abuse upon you."

That's part of it, in my armchair philosophy anyway.
posted by mrmojoflying at 4:38 PM on April 21, 2009 [20 favorites]

tenmuses, I didn't know we had discovered the seat of consciousness in the brain. Got a cite for that?
posted by Crabby Appleton at 4:39 PM on April 21, 2009 [2 favorites]

This is so intensely private, so far beyond the realm of things Other People Should Judge, it's unseemly to be looking at it.

Yeah, but it's a pretty FUCKED UP thing to be blogging about. I can't imagine the kind of mind that would choose BLOGGING as a response to a situation like this. It makes zero sense. None.

Look, bringing the baby to term and trying to keep it alive? Totally her business. Not our place to judge. Blogging about it? Well, now it's part of the internet.

I'll even go a step further. Keeping a blog like this is disrespectful to the child, if such a thing is even possible.

Ah, I envy the innocence of those of you who before now didn't know of the existence of anencephaly/dead baby sites. [....] There are even, believe it or not, "top 20 dead baby sites" sites.

Please tell me you're fucking with us.
posted by Afroblanco at 4:39 PM on April 21, 2009 [3 favorites]

Coincidentally, Pandora just cued up the Pixies' "Where is My Mind" just now.
posted by ooga_booga at 4:41 PM on April 21, 2009 [1 favorite]

Stress and Distress in Pediatric Nurses: The Hidden Tragedy of Baby K

"I find it appalling to care for her each day. It is cruel and inhumane to keep her 'alive.' Animals are euthanized for far less problems and yet this is a human being who really has no voice and no rights other than her mother demanding she be kept alive."
posted by turgid dahlia at 4:42 PM on April 21, 2009 [2 favorites]

I don't understand - are you saying that anencephaly is a gift?

No.

Well, sort of. For the infant in question, it could have been much worse. Google up "Julianna Wetmore" -- a child who was born with a very rare genetic craniofacial disorder who should have, by all rights, died moments after birth but who was kept alive through high-tech medical means. She's had (by now) hundreds of surgeries, and by all accounts is a bright, loving girl trapped in a fairly horrific body. No one questions her parents decision to take what are really unique, invasive, and immense steps to keep her alive as an infant. Yet this mother is being harassed by "haters" commenting on her website and even is subject to fairly insensitive comments here.

This woman expected her daughter to die a few minutes after she was born. Instead, she's had two months (and counting) to love this child. She posts a lot of videos on her site; in randomly poking around I found one of her daughter sneezing a tiny sneeze - a video not so very different from a video I have of my own son at about the same age. I guess I can't help but also regard the days and weeks that this woman has with her daughter -- the opportunity to do simple things like hold her, kiss her, take her out for a walk in the sunshine -- as a gift to the mother ... time no doctor predicted she would have.

I don't see much mocking in the comments so far, anastasiav.

"I can't wait to add zingy captions to the photos and deploy them in my next internet argument. "

"For Sale: One Baby Mozart, never used."

... and some "flatworm" comments that have since been deleted. Not to mention the comments I suspect she's getting to her actual blog as this gets picked up by "high traffic" sites like Mefi.
posted by anastasiav at 4:44 PM on April 21, 2009 [4 favorites]

Did I really just google "top 20 dead baby sites"? What the fuck is wrong with me?

I'm not sure they're even still around, and you certainly wouldn't find them with the term "dead baby" (they would have titles like "God's Precious Angels" and such). These kinds of sites used to be frequently linked by Something Awful and Portal of Evil back in the pre-web 2.0 days, which is how I know of them. The demise of AOL Hometown probably took down at least half of them. Trust me, though, there really were several ranking sites where you could vote on your favorite dead baby site. I couldn't make something like that up.
posted by DecemberBoy at 4:45 PM on April 21, 2009 [1 favorite]

This is so intensely private

There are tragedies in this world that, if you're lucky enough to avoid them, are better left unseen.

I dunno, the parent gets to decide what remains private on behalf of their child, as long as they retain guardianship. And seeing this... and looking up even grislier representations of anencephaly... hasn't diminished my expereince any, it's made me appreciate health, the risks of childbearing, and the human mind's capacity for belief, just a little bit more.
posted by Ambrosia Voyeur at 4:46 PM on April 21, 2009 [2 favorites]

I feel compelled to comment on this - there are others on here who are also members of the neuroscience community; I am simply one of them, and one who is an undergraduate, in the process of getting a neurobiology undergraduate degree.

She has no forebrain. A lot of what she thinks is consciousness is just functions of the brain stem.

Her baby is 'alive', in the strictest sense of the word, but her baby is not sentient.

She is grasping at nonexistent straws, futilely, to inaccurately explain things that she cannot understand.
posted by kldickson at 4:46 PM on April 21, 2009 [2 favorites]

Keeping a blog like this is disrespectful to the child, if such a thing is even possible.

Did you read it? Its actually a fairly typical mommmy blog -- here's a cute photo of my baby sneezing, here's a cute photo of this new outfit I made for her, today we went to the park....

What, only parents of "normal" children should blog?

I imagine that for parents of other babies who find out (normally while still pregnant) that their wished-for child has this horrifying issue its comforting, or at least informational. It gives hope.
posted by anastasiav at 4:47 PM on April 21, 2009 [1 favorite]

The only difference between her and me is that I wouldn't be saying 'you're going to be burning in hell," I'd be saying "fuck off and fucking die you fucking fucks".

EmpressC, you'd really set up a website featuring your acephalic baby, plus profanity? Why?
posted by dogrose at 4:49 PM on April 21, 2009 [1 favorite]

It gives hope.

Hope? For what, precisely? Certainly not for a swift and merciful end.
posted by dersins at 4:49 PM on April 21, 2009 [1 favorite]

Yeah, but it's a pretty FUCKED UP thing to be blogging about. I can't imagine the kind of mind that would choose BLOGGING as a response to a situation like this. It makes zero sense. None.

*shrug* Some people cope with shit by talking about it. A lot. Granted, this is WAY HELLA EXTREME, and yes, fucked up, but...I can sort of trace the mental path she took to get there.
posted by EmpressCallipygos at 4:51 PM on April 21, 2009

I was ignoring the heartless zingers, anastasiav (because they are generally written with little thought and therefore little malice), but I see where you're coming from.
posted by muddgirl at 4:52 PM on April 21, 2009 [1 favorite]

Cripes, did any of you who think this woman's only insanity is the fact that she's a fundie (she's a fundie AND she thinks her acephalic baby has a brain - that's TWO insanities, that's more than one insanity!) read the Wikipedia article?

From the NINDS page:

Anencephaly is a defect in the closure of the neural tube during fetal development. The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). The remaining brain tissue is often exposed--not covered by bone or skin. A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch may occur.
posted by kldickson at 4:54 PM on April 21, 2009

EmpressC, you'd really set up a website featuring your acephalic baby, plus profanity? Why?

*sigh* That's not what I was saying.

What I was saying was, if I were coping with some SERIOUSLY HEAVY shit and was just barely keeping my act together, and was struggling with a choice I'd agonized over, and someone who found out about it came along and got all judgemental about it without knowing the details, you can bet your ass I'd unleash holy hell on them, yeah.

The exact nature of what I'd be posting about and the exact size of the audience I was sharing the information with is irrelevant to my point.
posted by EmpressCallipygos at 4:54 PM on April 21, 2009 [3 favorites]

Meta
posted by leotrotsky at 5:02 PM on April 21, 2009 [1 favorite]

Animals are euthanized for far less problems ...

Horses are shot for broken legs. What is the point of this comparison?

Yeah, but it's a pretty FUCKED UP thing to be blogging about. I can't imagine the kind of mind that would choose BLOGGING as a response to a situation like this. It makes zero sense. None.

I can't begin to put myself in her situation, but I think that if I were faced with this situation, writing about it for other eyes to read might be an option. It might not make sense to you, and you might think it's "fucked up", but people have written their way through grief and difficulties many, many times before. It's not exactly an alien concept.
posted by Marisa Stole the Precious Thing at 5:02 PM on April 21, 2009 [4 favorites]

Here is an archive.org link to a now-defunct "top 40 dead baby sites" list, because I wouldn't believe it either without evidence. It's also a good example of the canonical dead baby site design style (lots of pink, poor spelling and grammar, Jesus). Warning: there's at least one graphic, disturbing picture.
posted by DecemberBoy at 5:04 PM on April 21, 2009

Why can't she accept the fact that her kid has no brain and she ought to just perhaps ask the doctors and perhaps a psychologist what the best thing to do is until her baby dies, which it probably will do very soon?

This isn't even the kind of stupidity that I'm terribly amused about mocking. It's the pathetic, sordid, you-fucking-idiot-you're-making-a-bad-situation-worse sort of stupidity.
posted by kldickson at 5:07 PM on April 21, 2009

I'm a non-breeder, pretty much totally unsentimental about life, death, babies, etc., ragingly pro-choice, ragingly against a lot of the horrendous cruelty inflicted on marginally viable neonates in NICUs . . . but I'm right there with anastasiav on this one.

I don't see what's so grotesque or appalling about this young woman choosing to go to term, bring her catastrophically deformed infant home with her, and give it basic palliative care, food, and affection until it expires. There aren't excessive medical resources being used (not in comparison with the outrageous interventions and technology routinely brought to bear on ultra-preemies with only a minimally greater "life" expectancy than Faith). This is in Canada, so the costs are obviously more manageable for all concerned, and the blog suggests that there hasn't been anything beyond the usual pre-natal care, a C-section, and feeding tube insertion and replacement. That's hardly going to sink the New Brunswick healthcare system.

The infant hasn't died quickly, but that doesn't mean its "existence" or whatever you'd call it has been merciless or tormenting. The mother has had a lot of months to come to terms, as much as someone can, with her situation, and she doesn't seem any more irrational or unhinged than any new parent, especially one whose offspring is doomed.

There was that FPP just a bit ago about how fossil evidence suggests that cave people cared for seriously defective progeny. Why shouldn't this woman wrap hers in a blanket, sing to it, keep it warm until it slips away? (I do sort of hate the implication that Myah is poised to become a big star at anti-abortion rallies, though, but hey, that's her right too.)
posted by FelliniBlank at 5:08 PM on April 21, 2009 [9 favorites]

It might not make sense to you, and you might think it's "fucked up", but people have written their way through grief and difficulties many, many times before.

Writing about something like this as a way to deal with grief? Not so strange. Throwing it onto the internet for everyone to gape at and poke with a stick? FUCKED UP.

I'm not saying that people are justified in leaving mean comments on her blog. But nobody's making her update it, or even keep it running.

Maybe she never spent any time on the internet before?
posted by Afroblanco at 5:11 PM on April 21, 2009

Maybe she never spent any time on the internet before?

That certainly was my feeling - if I had set something like this up, you'd better believe there'd be comment screening.
posted by Marisa Stole the Precious Thing at 5:12 PM on April 21, 2009

Writing about something like this as a way to deal with grief? Not so strange. Throwing it onto the internet for everyone to gape at and poke with a stick? FUCKED UP.

If there's one thing I feel that I've learned from the internet, it's that it's rife with assholes, but acting in order to avoid them doesn't change anything, really. Myah can share her story however she likes, and I'm sure it's providing good information or comfort or something to someone out there.

If you hate it, guess what? It's not meant for you.
posted by Ambrosia Voyeur at 5:15 PM on April 21, 2009 [5 favorites]

Why can't she accept the fact that her kid has no brain and she ought to just perhaps ask the doctors and perhaps a psychologist what the best thing to do is until her baby dies, which it probably will do very soon?

Again, I ask -- did you read it?

The baby has a feeding tube, and they're using some donated meds to clear up a lung infection. That's it. She's being cared for at home, given the same basic palliative care you'd give, say, someone who had entered a vegetative state through an accident. There's no real "heroic measures" going on here -- just love, and a feeding tube.

I suspect (since she marks milestones in days and weeks) that she's really, painfully aware of the fact her baby will die soon. I have to say, though, if you watch the video and can ignore the fact the baby has a huge dressing on her head, she looks like a normal newborn -- she cries, she moves, she sneezes, she snuggles.

She talks a lot about the medical care the baby gets, including an entry about Faith getting a CT scan because the doctors are puzzled that she had survived so long - over two months.

I'm not sure what you want her to do -- stop feeding her daughter? Stop loving her and caring for her?
posted by anastasiav at 5:16 PM on April 21, 2009 [1 favorite]

Instead, she's had two months (and counting) to love this child.

Except the most tragic thing is that there isn't a child to love; the mother loves the idea of a baby. As others have said, her baby-loving chemicals are going full gear because there is a lot of the stimuli of having a baby (touch, smell, sight) but it's all gone haywire because there isn't a person there.

It's as if her baby was stillborn and she imprinted on some sort of baby simulacra. I can't imagine how awful that must be. I think a lot of what we see is the result of the cognitive dissonance of every fiber of her body screaming BABY!!! LOVE!!! at her while somewhere deep in her brain she realizes that she's feeling all this for a living, breathing doll.

I'm sure there have been science fiction stories with similar concepts but this is too awful to keep thinking about, so I'm not going to.
posted by Justinian at 5:16 PM on April 21, 2009 [10 favorites]

got all judgemental about it without knowing the details

Which details would entitle people to be judgmental?
posted by adamdschneider at 5:17 PM on April 21, 2009

I'm not sure what you want her to do -- stop feeding her daughter?

I really wish this had come up in a different context because there is an interesting discussion to be had. Consider: What makes this a daughter? Just because she has a face? We can keep organs alive separate from a body; are they people? They have approximately the same amount of brain matter and consciousness of Faith after all.

But thinking about it continues to make me sad.
posted by Justinian at 5:20 PM on April 21, 2009

[A couple of really lousy comments removed. There's a metatalk thread for this if you need to keep up the metacommentary.]
posted by cortex at 5:20 PM on April 21, 2009

If there's one thing I feel that I've learned from the internet, it's that it's rife with assholes, but acting in order to avoid them doesn't change anything, really.

It's not even that really... I'd kinda see it like this :

You're in a painful, devastating, highly controversial situation. You have a problem.
You decide to write all about it on the internet. Now you have two problems.

Really, I just don't understand it at all. I'm trying to see it as something other than some kind of pro-life attention grab. It just makes no sense to me. Does not compute.
posted by Afroblanco at 5:22 PM on April 21, 2009 [3 favorites]

As I get older I find it harder and harder to be part of the human race.
posted by Divine_Wino at 5:23 PM on April 21, 2009 [2 favorites]

The exact nature of what I'd be posting about and the exact size of the audience I was sharing the information with is irrelevant to my point.

*sigh* But not my point.

No one denies that Faith's mommy is dealing with SERIOUSLY HEAVY shit. So why did she create the site? What was she expecting? It's not like the nasty commenters came up to her on the street or called her house.

My point is: If you put your shit out there, expect abuse. So why put it out there in the first place? Go to the existing network for support. Or limit access to the site. It's not that hard.
posted by dogrose at 5:24 PM on April 21, 2009 [1 favorite]

Consider: What makes this a daughter?

I see no difference between this infant and a person who has had an accident or medical emergency that drove them into a deep, permanent, vegetative state.

She carried the baby to term. She had hopes and dreams for her child. Now her task is to care for her child as it dies. If the child had entered a vegetative state due to, say, deprivation of oxygen at birth, would you still feel that it was not a daughter?
posted by anastasiav at 5:25 PM on April 21, 2009 [6 favorites]

I have to say, though, if you watch the video and can ignore the fact the baby has a huge dressing on her head, she looks like a normal newborn -- she cries, she moves, she sneezes, she snuggles.

Exactly. If you had a perfectly normal baby that spontaneously died at a few weeks old, you'd have roughly the same experience of that child and relationship and interaction with it as this woman has with hers. This one will never become sentient, but it's not like any brand-newborns are "people" to begin with in any meaningful sense of the word. Consciousness is something you evolve; newborns have more potential for sentience than the article itself. This one doesn't have that potential, but any new parent who coos at a tiny swaddled thing is interacting with the "idea" of child rather than an actual child since the little lumpy bundle doesn't actually have an identity for some time.
posted by FelliniBlank at 5:27 PM on April 21, 2009 [2 favorites]

""I can't wait to add zingy captions to the photos and deploy them in my next internet argument. "

"For Sale: One Baby Mozart, never used."

... and some "flatworm" comments that have since been deleted. Not to mention the comments I suspect she's getting to her actual blog as this gets picked up by "high traffic" sites like Mefi."

Hey, those are both mine!

Didja miss the other comment? The one where I make a brief meta-comment on the emotional pornography we're being served up? Because that's what this is, even if the mother is too tied to her own grief to understand that.

I'm going to guess not, because you're posting stuff like this: "I imagine that for parents of other babies who find out (normally while still pregnant) that their wished-for child has this horrifying issue its comforting, or at least informational. It gives hope."

What information? That if their kid is born without a brain that doesn't mean they can't wear a hat? What hope? That you can keep your brainless kid alive and stave off having to deal with the inevitable realization that it wasn't ever really there for, oh, at least two months?

I know that is callous. I know that it's cold. But this pain is largely self-inflicted, and trying to dress it up in some sort of framework where it's ultimately edifying strikes me as misguided and enabling.
posted by klangklangston at 5:27 PM on April 21, 2009 [3 favorites]

Afroblanco: Really, I just don't understand it at all. I'm trying to see it as something other than some kind of pro-life attention grab. It just makes no sense to me. Does not compute.

People in extreme emotional states do not act rationally.
posted by Mitrovarr at 5:28 PM on April 21, 2009 [3 favorites]

I'm trying to see it as something other than some kind of pro-life attention grab.

There are thousands of sites out there where mothers and fathers of terminally ill children are writing about their daily experiences in caring for -- and mourning -- those children. I don't see any difference between those sites and this one. Its not an attention grab. Its just someone writing about her experience as a parent. The big difference is that her baby has a birth defect from which she cannot recover.
posted by anastasiav at 5:28 PM on April 21, 2009

But mostly what we have inside is ugly...it's guts.

No way! Guts are beautiful! Glistening and glossy, and all these neat hues, and some bits of them pulse and others don't, and there's all those patterns and dimples and ridges and stuff. Guts are gorgeous!

That's why I've installed a porthole on my abdomen. Blue LEDs around the outside, too, for that high-tech look.
posted by five fresh fish at 5:33 PM on April 21, 2009 [2 favorites]

What hope? That you can keep your brainless kid alive and stave off having to deal with the inevitable realization that it wasn't ever really there for, oh, at least two months?

Yep. Exactly that. That they can postpone the pain of losing the child for a day, a week, a month ...
posted by anastasiav at 5:33 PM on April 21, 2009 [1 favorite]

Christ, this is the most heartbreaking thing I've read in a long time. I cannot fathom the cruelty of other people - this girl is clinging to absolutely everything she possibly can to keep her sanity intact and her baby alive. Perhaps the sensible thing would have been to abort or let the child pass so that organs can be donated, but hey! Guess what! Humans aren't always sensible. Sometimes we're affected by our hopes and dreams and emotions. I don't know what the hell I would do if I were her.
posted by saturnine at 5:34 PM on April 21, 2009

"Yep. Exactly that. That they can postpone the pain of losing the child for a day, a week, a month ..."

Rip the band-aid off.

False hope is crueler than no hope at all.
posted by klangklangston at 5:35 PM on April 21, 2009

I don't see what's so grotesque or appalling about this young woman choosing to go to term, bring her catastrophically deformed infant home with her, and give it basic palliative care, food, and affection until it expires.

How about the kids who will die without donor organs? Kids who can feel pain, have consciousness, and who can grow on to become fully functioning adults? What purpose does it serve to have those (presumably) healthy organs rot inside an empty shell?

I'm not sure what you want her to do -- stop feeding her daughter? Stop loving her and caring for her?

Take the baby to the hospital when it starts to die so that the organs can be used to let other children live. Doesn't Jesus want those other babies to survive?

I'm not trying to sound heartless here. If this had happened to me, my chief thought would be about how I could make something good out of my child's tragic life. How can you let a good set of lungs, heart, liver, and kidneys go to waste? What about those other families? Your baby is going to die anyway, and cannot feel pain, so when it's time, let your child give the gift of life to others, as it were. Failing to do so is unspeakably selfish in my book.
posted by marble at 5:36 PM on April 21, 2009 [4 favorites]

I don't know...my Pandora just queued up "We Ain't Goin Out Like That" by Cypress Hill.

So, whatever works for you.
posted by 8-bit floozy at 5:38 PM on April 21, 2009 [1 favorite]

anastasiav: If the child had entered a vegetative state due to, say, deprivation of oxygen at birth, would you still feel that it was not a daughter?

Well, yes (assuming you meant a brain-dead non-reversible vegetative state.) It wouldn't be her daughter any more, it would just be her daughter's body. Most sensible people disconnect life support or donate organs at that point.

This is even less than that - there wasn't ever anyone there to be alive in the first place. Her baby isn't even dead - it wasn't ever alive as a thinking, feeling being. "Faith" never existed, was never born, and never will die.

That being said, I don't really care either way if she takes care of it. At the end of the day, there's nobody there to suffer but the mother. I just hope this doesn't make it all worse for her in the end.
posted by Mitrovarr at 5:38 PM on April 21, 2009 [3 favorites]

If the child had entered a vegetative state due to, say, deprivation of oxygen at birth, would you still feel that it was not a daughter?

I don't feel it's not a daughter; I feel that it is. But I don't think I'm being rational, which was my point. That makes this woman's situation even more tragic to me, because I can see myself acting the same way since I think I'd go crazy with cognitive dissonance.
posted by Justinian at 5:39 PM on April 21, 2009 [1 favorite]

""Faith" never existed, was never born, and never will die."

I'm pretty sure that's Jesuit thinkin'.
posted by klangklangston at 5:40 PM on April 21, 2009 [2 favorites]

But this pain is largely self-inflicted, and trying to dress it up in some sort of framework where it's ultimately edifying strikes me as misguided and enabling.

I think, in the simplest terms, what Myah is trying to share here is, "I am a pro-choice mom paying the price, and here are what I consider to be my experiential gains."

If you're uninterested in following pro-choice beliefs to their logical, viceral, and life-altering conclusion with her, so be it. Just because it doesn't make sense to you that she's caring for a baby with no more person-potential than a goldfish, doesn't mean its entirely insensible for her to promote doing so.

As for people criticizing her hormonally-driven, base, animalistic love for her baby, well, whatever. People love GOD and shit. Loving feels good. There's no reason not to choose do do it if you want to. Beats watching tv, anyway.
posted by Ambrosia Voyeur at 5:41 PM on April 21, 2009 [3 favorites]

Babies with anencephaly, if you can even call them babies, either feel no pain or feel nothing but pain, depending on how much brain stem there is. If it's the latter, how many of you would change your support?

Reading about the donated medicines, I can only hope that those medicines were tainted by someone interested in giving young Myah the help she needs rather than the help she thinks she wants. The best thing that could happen to her is to switch from a steadily dying baby to a dead baby as soon as possible.
posted by kafziel at 5:41 PM on April 21, 2009

Given that the sack of human genome has a bare minimum cost to society — it isn't needing intensive intervention — I couldn't give a fart what this lady does with it. I don't understand why there are people who are expressing strong opinions and emotions on this subject. What she's doing is not hurting anyone except, possibly, herself.

I think it's freaky, but there's plenty of freakier shit in the world. I think she's setting herself up for some major emotional problems when the SoHG dies, but there are people doing far worse emotional damage to themselves.

As long as it's not sucking back healthcare dollars that can be better applied elsewhere, let her be.
posted by five fresh fish at 5:44 PM on April 21, 2009

*removes thread from activity*
posted by Marisa Stole the Precious Thing at 5:45 PM on April 21, 2009

"I think, in the simplest terms, what Myah is trying to share here is, "I am a pro-choice mom paying the price, and here are what I consider to be my experiential gains.""

Where does it say that she's pro-choice?

And, frankly, I consider my being pro-choice to be a question of liberalism, not of solidarity. I think people (women, really) should be able to make their own choices, but that doesn't mean I agree with them.
posted by klangklangston at 5:47 PM on April 21, 2009 [1 favorite]

If this had happened to me, my chief thought would be about how I could make something good out of my child's tragic life. How can you let a good set of lungs, heart, liver, and kidneys go to waste?

That's exactly how I'd respond, but I'm goddamned if I think others have some sort of moral imperative to make that same choice.
posted by FelliniBlank at 5:47 PM on April 21, 2009 [5 favorites]

How about the kids who will die without donor organs? Kids who can feel pain, have consciousness, and who can grow on to become fully functioning adults? What purpose does it serve to have those (presumably) healthy organs rot inside an empty shell?

It's called choice. We do not force people to abort, we do not force people to give birth, we don't force people to sign organ donor cards, and we don't force people to give up their birth product to be chopped up into bits for other people.
posted by five fresh fish at 5:48 PM on April 21, 2009 [19 favorites]

Really, I just don't understand it at all. I'm trying to see it as something other than some kind of pro-life attention grab. It just makes no sense to me. Does not compute.

I don't know. Not everyone grieves best privately. I don't really think that this woman should be made to suffer in silence, made to be invisible, just because her severely deformed child is unpleasant for us to look at. Because I have a feeling that's what a lot of people are reacting to.

Also, for everyone who's like, "That baby has no brain! Doesn't she know it can't think!", well, for people who believe their just-fertilized eggs have souls, thinking that a baby that seems to respond like a normal newborn has a soul doesn't seem like much of a stretch. I'm about as non-Christian as they come (and way way way prochoice), but not letting her child, what, starve to death? fits the internal logic of religious fundamentalist arguments, even if it's not sound.
posted by PhoBWanKenobi at 5:48 PM on April 21, 2009 [2 favorites]

I think people (women, really) should be able to make their own choices, but that doesn't mean I agree with them.

No one's asking you to agree with them. People are only expecting you to have compassion, rather than mockery, alongside your disagreement is all.
posted by EmpressCallipygos at 5:49 PM on April 21, 2009

Stop calling it a "baby". The word "baby" is loaded and makes a person think "Hey, tiny person!" This isn't a person in any sense of the word, never was, and will never grow up to become one. It is a skin-sack of fluid and organs and it is going to expire.

"Faith" never existed, was never born, and never will die.

Hey, you know, you don't get to decide how other people understand the world. In her framework she has a baby, and is acting accordingly. I'm willing to believe her too.
posted by Sova at 5:49 PM on April 21, 2009 [3 favorites]

I can only hope that those medicines were tainted by someone interested in giving young Myah the help she needs rather than the help she thinks she wants…

I have come to the conclusion that some of the people in this thread are more sick in the head than the mother. Gahd.
posted by five fresh fish at 5:51 PM on April 21, 2009 [8 favorites]

Most sensible people disconnect life support or donate organs at that point.

This child isn't on any kind of life support, unless you call feeding her life support. No vent, no mechanical assistance of any kind.

How about the kids who will die without donor organs?

Eh? Faith was born alive and is not now being kept alive by an artificial means. The "Baby K" article linked above specifically talks about how anencephalic infants don't meet the "legal definition of death by neurologic criteria" and goes on to say "[t]he standard treatment is to keep anencephalic infants warm and fed as their organs fail. Death usually comes from respiratory failure, because the brainstem is not adequate to the task of regulating breathing." Faith is getting exactly the standard recommended treatment. In order to harvest her organs, you'd have to take active steps to kill her: stop feeding her, basically, since she's not otherwise on life support. No one disputes that she will die eventually, and if her mother wants to donate her organs at that time I'm sure some other children will benefit. But to actively terminate this baby's "life" - and yes, I put that in quotes - would violate medical ethical standards. Nature needs to take its course. The unusual part here is that nature is taking her own sweet time in getting there.
posted by anastasiav at 5:51 PM on April 21, 2009 [6 favorites]

I know friends who have lost newborns to other conditions. Stillbirth. Complications from preeclampsia and prematurity, such as mitral valve stenosis. What that young woman is enduring is awful and horrific. Her grief and loss will always be with her.

What a shame that so little empathy and sympathy is in evidence here. Instead, the same pathetic axes are rising to be ground once again. :(

She deserves some measure of peace and patience from other human beings. I sincerely hope she finds it.
posted by zarq at 5:52 PM on April 21, 2009 [4 favorites]

Why do so many Christian people get off on contemplating endless shrieking agony for people who might disagree with them or who say unkind things about them?

A bunch of Internet Fuckwads mock you and your severely handicapped kid, but you're an ass because you fantasize about the eternal damnation they so richly deserve?

Really?
posted by ChurchHatesTucker at 5:54 PM on April 21, 2009 [18 favorites]

I have come to the conclusion that some of the people in this thread are more sick in the head than the mother. Gahd.

What, do you actually think that her emotional state now is healthier than it will be once Faith's lungs inevitably fail?
posted by kafziel at 6:01 PM on April 21, 2009

It's called choice. We do not force people to abort, we do not force people to give birth, we don't force people to sign organ donor cards, and we don't force people to give up their birth product to be chopped up into bits for other people.

I wasn't suggesting she be *forced* to do anything. Just that I disagree with the choice to coddle an empty baby-shell rather than donate its organs so that other real children could live.

But from what anastasiav says that may not even be possible (?), so... I dunno about that.

In order to harvest her organs, you'd have to take active steps to kill her: stop feeding her, basically, since she's not otherwise on life support.

Isn't she on a feeding tube? Don't lots of people have advanced directives that state "no feeding tubes"? I know my mom has one. Some people consider that unwarranted intervention.

And I think it *should* be allowed (and even encouraged, but NOT required) to donate such a baby's organs. They sure aren't doing any good inside that particular baby, anyway. Might as well give some families a chance at a good life for their baby. I will think what I think regardless of what current medical ethics fashions say.
posted by marble at 6:03 PM on April 21, 2009

I don't see what's so odd about this case. If you believe in magic, this is the kind of situation that your reasoning can lead you to. It's a real-life allegory about superstition.
posted by mullingitover at 6:08 PM on April 21, 2009

What, do you actually think that her emotional state now is healthier than it will be once Faith's lungs inevitably fail?

Learn to read.
posted by five fresh fish at 6:08 PM on April 21, 2009

Well gee, I apologize for hoping a speedy recovery on her then.
posted by kafziel at 6:10 PM on April 21, 2009

Isn't she on a feeding tube? Don't lots of people have advanced directives that state "no feeding tubes"? I know my mom has one. Some people consider that unwarranted intervention.

Faith is on a feeding tube. She also has a DNR. Perhaps some people do consider tubes unwarranted intervention, but its hardly standard. Feeding tubes are considered "life sustaining" treatment rather than "life saving". Removal of feeding tubes from patients in a persistent vegetative state is apparently fairly controversial: Findlaw article on current court cases.

As a parent, I can't imagine taking that step.
posted by anastasiav at 6:13 PM on April 21, 2009

http://www.miketheheadlesschicken.org/story.php
posted by mwhybark at 6:13 PM on April 21, 2009

Well, 8-bit floozy, Pandora just cued up "Turn On Me" by the Shins, so I figure your comment was to be expected.

I'm going to found a religion based completely on Pandora playlists now.
posted by ooga_booga at 6:16 PM on April 21, 2009 [1 favorite]

Well thank you metafilter for both making me feel really depressed and for teaching me to draw the line between lol and xtians
posted by uandt at 6:19 PM on April 21, 2009 [1 favorite]

Why does she make a blog?

Because offering the world your experience somehow gives it validity. There are millions of people out there, maintaining personal blogs, many of which hold no interest to the average reader, some of which are offensive, and some of which are somehow deeply compelling despite being intensely personal. It is absolutely pointless to criticize this woman for writing about her experience and putting it on the internet. It's like saying that nobody should ever write a book about his or her personal tragedy because it might get a scathing review. People need to be heard. The internet is the best way to be heard.

You could look at it this way: a woman has a daughter who lacks a brain and is therefore not capable of consciousness. You could stop calling the child a daughter, stop calling it a child. You could argue that this woman's love is sick, misplaced, or disgusting. You could fault her for not giving up the organs that are currently alive inside her non-child.

Or you could look at it this way: a woman has a daughter who lacks a brain and is therefore not capable of consciousness. This woman loves her daughter with a ferocity that is astounding. In fact, she loves her daughter unconditionally. Is loving a child without a brain exactly the same as loving a rock, or a worm, or a tree, or something else without a brain? Of course it's not the same. Don't be silly. Arguing that "there is no person to love" is about as helpful as telling an expectant mother that the fetus inside her is just a clump of cells, not a person, not a entity. This is no time to get technical. This is the most passionate, deep, ingrained human tendency - to love one's children. Is it really so awful for her to love a child that cannot love her back? This situation is extremely painful and I imagine that some people are picturing this woman showering affection on some inanimate object in a truly delusional way. But this daughter is not an inanimate object - she's a living breathing baby, with a face, yes, who moves and makes noise - which is about all any infant does. I do not see any biological reason why her mother wouldn't fall in love with her just like any other infant, and that's exactly what's happened. Her blog says that she's finding joy in her time with her daughter, and just because the situation is so painful to even look at doesn't mean she's not telling the truth. As it happens, I'm a pro-choice athiest feminist-type who generally favors organ donation who probably disagrees with 90% of this woman's beliefs, but I firmly believe that she should be allowed to have whatever experience she wants with her infant.
posted by Cygnet at 6:26 PM on April 21, 2009 [56 favorites]

Why do so many Christian people get off on contemplating endless shrieking agony for people who might disagree with them or who say unkind things about them?

Why would atheists condemn someone for caring for a profoundly disabled infant?

Disclaimer: I don't believe in god. But I have an ethical objection to actively removing the life of an infant that is not in pain. There is no person there in the usual, but this is a human. And, as humans, we need to think carefully about how we treat the disabled, including this baby with only enough brain for basic life function.

There's always been an ethical gray area when it comes to the need for donor organs vs. b a brain-dead patient. That gray area used to be a lot more conservative.

Anastasia's comments are incredibly thoughtful. thanks.
posted by theora55 at 6:38 PM on April 21, 2009 [2 favorites]

That's why I've installed a porthole on my abdomen.

The technical term is cannula.
posted by shelleycat at 6:44 PM on April 21, 2009 [1 favorite]

Whatever you think or feel about the baby, I believe that the love that the mother feels should be respected. I don't think it's reasonable to expect her to allow her child (or whatever term you'd prefer to use) to be treated badly, or not helped, even to benefit others or to "use less resources."

If we don't respect how she feels - and the strength of that feeling - then we move a little closer to a world with no comfort for anyone.
posted by amtho at 6:49 PM on April 21, 2009 [1 favorite]

Wow....just...wow.
posted by agregoli at 6:57 PM on April 21, 2009

As a mother of an anencephalic baby, thanks to all of you who expressed empathy to a woman in such a horrible, tragic time. The rest of you, I honestly wonder what personal hells you must have lived through to be so mean-spirted when compassion would have cost you so little.
posted by saucysault at 6:57 PM on April 21, 2009 [26 favorites]

My Pandora just cued up "Girlfriend in a Coma."

BZZZZT!!!

Whoa! LIghtning just struck me!
posted by Mister_A at 6:58 PM on April 21, 2009

saucysault--thank you for posting. Not sure what happened to Metafilter today to bring out the assholes..

Favorited cygnet's post, who already said what I wanted to. And then went and kissed my boy, because this woman's behavior seems completely understandable to me, were I to be as unfortunate as she is. Good luck, healing, and hope to her and a peaceful end for Faith.
posted by emjaybee at 7:20 PM on April 21, 2009 [3 favorites]

In some ways, I think this is an interesting reflection of the fact that our culture no longer values the act of journaling, the work of a diarist. That's viewed as a game for kids who grow out of it when they're adults.

These days, 'Blogging' is a catch-all for the act of ongoing writing on a given subject, and by nature it's a public exercise.
posted by verb at 7:22 PM on April 21, 2009

I agree, verb. This could make an excellent subject for a short article or a chapter in a memoir later in her life. Putting the raw experience out there—as is the norm in our voyeuristic/exhibitionist culture—is probably the most disturbing part of this story for me.
posted by sonic meat machine at 7:30 PM on April 21, 2009

>>She has a living doll. It has the same capacity for thought as one.

Ok - but are there not worse situations, and worse ways to react to this one?

>>This isn't a person in any sense of the word, never was, and will never grow up to become one.

Personhood is bestowed by others, not a result of qualities held by an organism. The baby is a person.

>>the mother loves the idea of a baby.

Don't all parents love the idea of their baby, rather than the individual they end up with, at least to begin with?

>>The best thing that could happen to her is to switch from a steadily dying baby to a dead baby as soon as possible.

I really find this remark, for lack of a more diplomatic word, arrogant (though representative of many of the comments here). Who are you to say what is best for the mother?

This baby, by the way, could live for a number of years cared for in this way. Many people could meet, and be affected by this child, in one way or another. Some might even prefer its company to encounters with some more verbal, if hostile, persons.
posted by not_that_epiphanius at 7:39 PM on April 21, 2009 [2 favorites]

As cautious as I am in wading into this mess, I feel that the problem we are having, as most problems are, is one of labels and relativism.

Pro-lifers constantly refer to "babies", "children", "infants" and "humans" being aborted. Within the first trimester, the majority of pro-choice advocates would argue that what is being terminated is not human. It is a mass of cells that, in cases of viability, has the potential to be human; the abortion closes the door to that potential.

The mass of cells that has been called "Faith" never has the potential to be human. It cannot form experiences. It cannot dream. It cannot love. It cannot think. Its cells can divide and multiply. It functions at the level of the brain stem: it has respiration, a pulse, and little else.

This is not the same as someone rendered brain-dead by a car accident. Whatever the merits of their lives, however old they were, those victims were human before their accident. Faith is not. Faith never can be. Faith is a bunch of organs that breathes, with cap pulled on its head to make it appear whole. It will never be more than that.

That "Faith's" mother loves it is without doubt. That its mother is also imbuing "Faith" with a whole bunch of qualities that it does not have, interpreted through a passion and a religious faith that does not allow for any other possibility, in which every autonomic twitch is seen as a sign of a conciousness that simply is not there, has never been present, and never will be, is also without doubt.

But more than loving, Faith's mother is selfish. She is, for reasons of religious mania and a deep desire to be a mother, maintaining a shell of flesh that would likely scream constantly, if it had the ability to do so. (And it never will).

I'd be interested to see the reactions of those of you who support the mother's choice in 10, 20, and 40 years, if medical technology grew to maintain "Faith" in this state, with never a flicker of consciousness, ever. If it's mother decided that the logical step for "Faith" at 18 was to impregnate it so it could have a child of its own.
posted by Bora Horza Gobuchul at 7:47 PM on April 21, 2009 [7 favorites]

I guess she won't be donating her daughter's organs.
posted by MaryDellamorte at 8:12 PM on April 21, 2009

Whoa, Bora Horza Gobuchul - that's a really interesting question and opens up a whole slew of possible ethical conundrums. It could be argued that Faith could not possibly provide consent for intercourse, much less being impregnated, so I'd imagine that would fall under the rubric of sexual assault. That being said, if the parents hold power of attorney, can they provide such consent on Faith's part?

But really, such a decision has to be kept separate from keeping Faith alive, especially if it only comes down to keeping her fed. Taken to its logical conclusion, even if Faith were not going to expire from the typical things which cause anencephalic babies to expire, I don't think Faith will ever transition to solid food. After that, the body won't be in any position to exercise and all its muscles will atrophy from lack of use. I would expect that this would lead to death of some sort.

So perhaps my plans of a clone farm for harvesting parts may has run into another hitch.
posted by ooga_booga at 8:13 PM on April 21, 2009

I'd be interested to see the reactions of those of you who support the mother's choice in 10, 20, and 40 years, if medical technology grew to maintain "Faith" in this state, with never a flicker of consciousness, ever. If it's mother decided that the logical step for "Faith" at 18 was to impregnate it so it could have a child of its own.

I think most of the compassionate reactions here are based on assumptions that Faith a) cannot feel pain and b) is not likely to live long. In which case, what her mother is doing is simply an extended grieving process that hurts no one. Change either assumption and our reactions would also change.

No, I would not support keeping her body alive indefinitely, and certainly not impregnating it; whether her mom would have some legal right to do so seems unlikely. Technology has forced many difficult choices on us, and this one may arise in the future, but seems unlikely in this case. Perhaps we should save assumptions about the ethics of that hypothetical future until it arrives and we have more data to make decisions with.

But more than loving, Faith's mother is selfish. She is, for reasons of religious mania and a deep desire to be a mother, maintaining a shell of flesh that would likely scream constantly, if it had the ability to do so. (And it never will).

Your argument is confused; you maintain that Faith has no feelings and is not a person, yet that her mother is cruel to keep her alive. Cruel to who? Selfish...to who? What is she being selfish about? Are you saying you think Faith is in pain and suffering? Because that is not what the beginning of your post implied.

There's a difference between feelings of revulsion and argument.
posted by emjaybee at 8:15 PM on April 21, 2009 [3 favorites]

I'd be interested to see the reactions of those of you who support the mother's choice in 10, 20, and 40 years, if medical technology grew to maintain "Faith" in this state, with never a flicker of consciousness, ever.

I'd be worried about the mother. I'd wonder if she was maybe having some trouble accepting what happened. I think as far as that goes, we're in agreement. But if it came down to it, of course I'd support her choice. Why wouldn't I? Who would it be harming? If you're really committed to the belief that Faith isn't alive, and can't think or feel or suffer, then why should you care what happens to her?

If it's mother decided that the logical step for "Faith" at 18 was to impregnate it so it could have a child of its own.

What a bizarre straw man. Where did that even come from?
posted by nebulawindphone at 8:17 PM on April 21, 2009 [2 favorites]

The mass of cells that has been called "Faith" never has the potential to be human.

It has human DNA. I can't see how it is anything but an tragically incomplete human. "Person," on the other hand, is a stretch too far.
posted by five fresh fish at 8:21 PM on April 21, 2009 [2 favorites]

Humans use resources for the upkeep of useless things all the time. Things that could be put to better use in other ways. Pet dogs, horses, llamas, whatever, could be food for starving people, just like anancephalic babies could be organs for dying people. I'd argue that this mom seems to be getting as much enjoyment out of this baby as pet owners get out of their animals, conscious or not.

Some horses may get shot for broken legs, but tens, if not hundreds of thousands of dollars were spent on Barbaro. It could've been spent on medical care for humans, who have consciousness and are self-aware, but Barbaro's owners had that choice, same as this woman (23 may be young, but she's still an adult. Don't try to extend childhood any more than it's already been stretched, please. We have too many adult children subscribing to that philosophy already.).

It just really doesn't concern me. To the best of anyone's knowledge, the baby's not in pain. Massive resources are not being diverted to keep her alive. The mother is enjoying her time with the baby. Who cares?
posted by po at 8:21 PM on April 21, 2009 [4 favorites]

The word is grotesque - something about the meaning of that word really describes this for me. I know that the mother is experiencing this event as anyone who had been through pregnancy would - that this is her child. But appearances are deceiving, and I can't help but agree with those that there never was a child here to begin with - it's hard even for outsiders to grasp this concept so I can't imagine how she would.
posted by agregoli at 8:28 PM on April 21, 2009

Metafilter: the most superficial mass medium available
posted by furtive at 8:32 PM on April 21, 2009

Oh my god, anastasiav. The Google search for the girl you mentioned, Julianna Wetmore, is one of the most horrific things I've ever seen on the web, and I've seen a lot. I feel terrible for her and her family.
posted by edrnjevich at 8:33 PM on April 21, 2009

As someone who has spent a lot of time in both pediatric ICUs and intensive care nurseries, I am ambivalent about this case. It is very difficult to care for children who will never recover and endure a lot of suffering with no hope of recovery. This infant is not that patient. She will never "recover" but the only one having to perform her daily care is her mother and the family that loves her.

She (the infant) does not really qualify for organ donation as at least one other person has referred to. For the record, I would approve of legislation allowing anacephalic infants to donate organs. There is nothing ambiguous about lacking a brain.

All of the photos that I saw (I couldn't bring myself to read much of the updates) included a hat pulled down low. If the hat were removed the photos would have been much more disturbing. I'm glad she got the pulmicort for free, it takes at least four weeks to become effective. She may not have four weeks. I have seen one patient who was about 18 months old. I don't know what ever happened to her. Her mother was pregnant again so the energy devoted to her may have shifted to the new baby.

In the end, you gotta do what you gotta do. This is what this particular mother has to do! This is sad on so many levels.
posted by whatever at 8:40 PM on April 21, 2009 [2 favorites]

Just awful.

The situation. This thread.

All of it, just terrible.
posted by Ynoxas at 8:48 PM on April 21, 2009 [1 favorite]

I guess maybe what people react so strongly to is the ridiculous cognitive dissonance required... that this woman seems to think that somehow, magically, she is going to have something more than sack of living cells for a daughter, praying so hard that somehow god is going to magically make that little bundle of brain stem cells turn into a "baby".

I couldn't help but feel the same way? I don't know WHY I had the emotion, but I was angry at this woman when I first read this story. I can't explain it, I just was. Maybe it's because somehow I can easily draw a line from things like this to the grip that religion still has on our society. That people are so clouded by their religious feelings that they are willing to throw science out the window and pray so hard for something that is physically impossible.

I guess people being so willfully ignorant bother me. I wish it didn't bother me, though. It would make my life so much easier.
posted by autobahn at 8:52 PM on April 21, 2009 [6 favorites]

Julianna Wetmore, is one of the most horrific things I've ever seen on the web

I find statements like this pretty disturbing. To call a little girl a "horrific thing" is pretty low. I think sometimes people who say these things fancy themselves realists who aren't going to sugar-coat the issue, pretend that it doesn't matter what she looks like, or offer platitudes about how "it's what's in your heart that matters".

The thing is, Julianna Wetmore is absolutely, undeniably a human being. She has a life. She has probably learned things due to her appearance that many people never learn, or only learn later in life. She has probably had many terrible and wonderful experiences due to the way she looks. (If you don't believe anything wonderful could come of it, or that she's merely an object to be pitied, you should probably ask people with other visible disabilities how they feel.)

I think it's reasonable to feel terrible for the operations she's had to undergo at such a young age, and reasonable to feel terrible for the stress and strain that the constant hospitalization, expense, and likely ridicule has put on her and her family. (Although from looking at her web page she looks like a happy young girl who is living a pretty good life, and to ignore all the evidence of that in favor of saying "she looks disgusting so her life must be horrible" would be pretty silly.) But I don't think it's ever reasonable to call her a "thing".
posted by Cygnet at 8:58 PM on April 21, 2009

I wouldn't call this "willful ignorance", autobahn, so much as I would call it "gripped by grief". In this case, I would say that her own emotions are having more of an affect on what she's doing now than her religious upbringing or background.

After all, the same religious background could lead another family to let a child such as Faith go because "God must have willed it to be so". Religion would also have lead them to make their choice, they just made a different one. Would you also consider their choice invalid because religion affected it? If not, why not?
posted by EmpressCallipygos at 8:58 PM on April 21, 2009

Writing about something like this as a way to deal with grief? Not so strange. Throwing it onto the internet for everyone to gape at and poke with a stick? FUCKED UP.

that's not because she's FUCKED UP - that's because "everyone's" FUCKED UP

within a day of my daughter's birth, we had to take her back to the hospital because of a severe illness - the mockers and the haters have no idea what something like that is like for new parents - and what this woman is going through is much, much worse - our kid pulled through - hers won't

yeah, just keep telling yourself that it's HER fault we live in a sick world with sick fucks in it

but you're lying to yourself - and you're blaming the victim

i guess she'd better not be wearing real short dresses, either
posted by pyramid termite at 8:59 PM on April 21, 2009 [2 favorites]

Cygnet, why did you assume that he was referring to her, and not the situation as a "thing?"
posted by agregoli at 9:00 PM on April 21, 2009

Sidestepping everything about the specific issues of this mother and this child, I'm reminded of this article about perinatal hospice. The fact that in these cases, the inevitable loss of a child has to be dealt with, somehow, by the parents, and that sensing and knowing the physical reality of its passing can aid the grieving process in the years to come makes sense to me.
Creating a window, by this blog, for others without to view this process, however does not. It's an invitation to all forms of yahoo-ism the internet has to offer. This may be the form that her grieving process takes; making it public. But by opening up what should be the most intimate passages in one's life, you're bound to suffer the opinions of others.
posted by Cold Lurkey at 9:01 PM on April 21, 2009 [1 favorite]

agregoli:

I tried reading the sentence a couple of ways, and asked a friend, and ended up deciding that was the correct way to parse it. If I'm wrong, then I'm wrong - I definitely have no problem admitting that I could have parsed it wrong, but of course, my opinion still stands.

Also, "thing" or not, I would personally never describe the girl, or any girl, as "horrific". This may be a question of semantics but I feel strongly about it. I'm not saying that horror is an invalid emotion to feel upon seeing her, or that anybody's particular reaction is wrong, but I think it's a terrible idea to describe a anybody as "horrific" when there are many ways to describe one's reaction or the person's appearance in less hurtful ways. For example, "I felt horrified" is very different from "she is horrific".
posted by Cygnet at 9:05 PM on April 21, 2009 [1 favorite]

(And by "my opinion still stands", I mean that my opinion on the subject matter still stands - if I've misunderstood edrnjevich, then of course I've misunderstood and that's that - I'm not going to go on thinking I know what he/she meant if I really don't.)
posted by Cygnet at 9:13 PM on April 21, 2009

Metafilter: Your favorite deformed baby sucks.
posted by dr_dank at 9:16 PM on April 21, 2009 [2 favorites]

Cygnet I tried reading the sentence a couple of ways, and asked a friend, and ended up deciding that was the correct way to parse it.

I think edrnjevich was referring to the [results of the] Google search for Julianna Wetmore, for example the Encyclopedia Dramatica entry, and I definitely agree with him/her there.

Is there a term for "writing intended primarily to cause severe emotional pain to the reader"? "Trolling" doesn't seem to quite cut it. A troll may intend to cause annoyance, even anger, but this kind of thing is much worse than that.

In my opinion what Myah is doing, both by keeping Faith alive and by posting on the internet (of all places) about it is harmful to herself, and possibly to others, but it's a harm that she's within her rights to inflict. But the mothering instinct says "do it", cultural conditioning provides a swaddling-cloth of religious duty to wrap it up in, and she has been well warned by enough experts that your warnings and mine will make no difference to her. I wish her family and friends well in helping Myah deal with Faith's inevitable (and soon-to-come) death.

I think that will help, actually. When Faith dies, Myah becomes not the unique and desperate keeper of an extremely unusual and badly damaged victim of human variation, but just another mother who lost a baby who could not, by any means available to her, be saved. She can take her blog down, the exact circumstances can fade into history, and she can go on with her life. I hope.

As for the trolls and worse-than-trolls, unfortunately karma does not exist, there is no God waiting to strike down the wicked, and unfortunately they will continue their lives in more-or-less the same manner. If the wicked are to be struck down, you, or someone like you, must do the striking. If you can't, or don't want to enough, or the consequences to you outweigh the gain, then you have your own conflict between instinct and rationality to deal with.
posted by aeschenkarnos at 9:48 PM on April 21, 2009 [1 favorite]

Cygney, the exact quote is "The Google search for the girl you mentioned, Julianna Wetmore, is one of the most horrific things I've ever seen on the web, and I've seen a lot. I feel terrible for her and her family."

Removing those first eight words is the only thing that makes it sound as if edrnjevich was indeed talking about "a thing". Otherwise I don't see how you could read it as not expressing sympathy for Julianna and complete understanding that she's a sentient human being who's dealing with an incredibly difficult situation, as is her family.
posted by andraste at 9:57 PM on April 21, 2009 [1 favorite]

No, actually, it was just me making a mistake. Didn't edit in order to prove my point - I didn't understand that edrnjevich meant the actual Google search results (all of them) as opposed to a particular result, or the girl herself. The first didn't even occur to me. In any case, I've already apologized to edrnjevich - it was my fault.
posted by Cygnet at 10:04 PM on April 21, 2009 [1 favorite]

I'm going to laugh if Faith grows up to be a math major.
posted by mullingitover at 10:11 PM on April 21, 2009

Donating the organs of an anacephalic baby is not as simple as declaring the infant "brain dead" and taking the organs. Each state has different guidelnes for the determination of "death".

Faith is breathing on her own and that right there would prevent donation in the state in which I live.

In fact, even when we know that an anacephalic infant is to be born, we can't really plan for a donation process. It is considered to be a "slippery slope" and an issue so mired in ethical conflicts that these infants are given comfort measures and allowed to die. No organs taken. The points that Faith's mother makes about why she wouldn't donate Faith's organs are all part of the ethics quagmire.

How about the harvesting of near term Infant's organs that were to be aborted anyway?

In my state...if a patient is admitted with a Glascow coma scale rating below a certain level, we are required to call the Organ Procurement Agency. Because of the "good" chances that the patient may become a donor. I understand this in principle. But it was at that point that the donation process became less noble and more commercial. I know it doesn't change the care we give. But it has started to creep me out just the same.

I can understand the revulsion of some of the posters, and am not suprised by the nastiness of the mockery of the mother's devotion. Maybe it is a an over reaction to what some may see as an unnecessary martyerdom. The far rightness of her religous views make it even easier to make a joke of her and her infant.

I myself don't see this as a "miracle" of life. It is amazing to me how little brain function is required to keep a human body going.

But I do think it tells a lot about person on how they react to the "weakest, unattractive and lowest of the low."

So you haters out there...you just might be a waste of space too.
posted by moonlily at 10:13 PM on April 21, 2009 [4 favorites]

The kid's just a "bag of cells"; just like her mother, you, and I.

Well I'm just guessing about you.
posted by Monday, stony Monday at 10:15 PM on April 21, 2009

The Google search for the girl you mentioned, Julianna Wetmore, is one of the most horrific things I've ever seen on the web, and I've seen a lot. I feel terrible for her and her family.

I am curious how Julianna feels about Julianna. I feel no need to go to sleep tonight with whatever "horrific things" you claim are to be seen, so please do tell:

Does Julianna seem to indicate that life's worth living?

In my opinion, politeness behooves me to not question as to whether I were in that situation and how I would feel about it. It's not about me. It's about the other person.

If Julianna is cool with it, then I guess I have to be cool with it. And we could do with a lot more politeness in our society.
posted by five fresh fish at 10:22 PM on April 21, 2009 [1 favorite]

Your argument is confused; you maintain that Faith has no feelings and is not a person, yet that her mother is cruel to keep her alive. Cruel to who? Selfish...to who? What is she being selfish about? Are you saying you think Faith is in pain and suffering? Because that is not what the beginning of your post implied.

I did not say that Faith was devoid of sensation - there is a functioning brain stem, so there is still the possibility of pain. I'm not even sure how, of if, that could be measured: there's been a debate for decades whether lobsters feel pain as they are boiled, and they have a brain, of sorts. But while there is the possibility that you are keeping an organism alive solely for your own feeling of "love" - an organism that may experience pain and nothing more - yes, that to me is selfish, a covetousness so deep it borders on the pathological.

And if Faith's organs start to break down, and muscles atrophy, and its mother starts to ask for, and receive, more and more extreme medical measures to keep it alive, those are more resources potentially taken away from a patient with a freaking brain.

If its mother decided that the logical step for "Faith" at 18 was to impregnate it so it could have a child of its own.

What a bizarre straw man. Where did that even come from?

It is not as though analogous situations have never happened before.
posted by Bora Horza Gobuchul at 10:24 PM on April 21, 2009

After all, the same religious background could lead another family to let a child such as Faith go because "God must have willed it to be so". Religion would also have lead them to make their choice, they just made a different one. Would you also consider their choice invalid because religion affected it? If not, why not?

Some people use religion to make the right choice, and some people use religion to make the choice right.
posted by five fresh fish at 10:26 PM on April 21, 2009 [3 favorites]

Removing those first eight words is the only thing that makes it sound as if edrnjevich was indeed talking about "a thing". Otherwise I don't see how you could read it as not expressing sympathy for Julianna and complete understanding that she's a sentient human being who's dealing with an incredibly difficult situation, as is her family.

I read it as Cygney read it. I thought he was calling the girl horrific. Only by re-reading the original post could I wrap my head around to reading it the way you did.

I suspect the time gap between reading anastasiav's original and edrnjevich's response is the root problem; edrnjevich's message doesn't make it clear all on it's own that he's talking about something other than the child.
posted by five fresh fish at 10:36 PM on April 21, 2009

Speaking of more politeness, I see that Cygney was utterly polite in working through the misunderstanding.
posted by five fresh fish at 10:42 PM on April 21, 2009

And if Faith's organs start to break down, and muscles atrophy, and its mother starts to ask for, and receive, more and more extreme medical measures to keep it alive, those are more resources potentially taken away from a patient with a freaking brain.

But Faith's mother hasn't, yet. She may never do so. As long as she doesn't, who cares?
posted by Monday, stony Monday at 10:46 PM on April 21, 2009 [1 favorite]

I'm hesitant to wade in here, I really am. More than a few people in this thread have wondered "why all the hate?" for this mom. Where's the empathy, the compassion for her grief?

I don't hate Faith's mom. I don't think she should be mocked, or forced to donate her child's organs. But she does make me furious.

My wife and I found out our second pregnancy suffered from a severe hydrocephalus. Pretty bad, but arguably better than anencephaly. Treatable, sort of, sometimes. We educated ourselves, talked to experts, talked to each other. We thought about our baby's quality of life, and then decided to terminate the pregnancy. We did it for our baby. For us, that was empathy. That was love. And yes, we grieved, and still do.

But, because of people like Faith's mommy, we had to drive sixteen hours to go to one of the few clinics willing to perform a late-term termination. The only medical provider who would show understanding and empathy for us, and our decision, was a man who had been shot multiple times and had his clinic bombed by zealots. Twice a day for two weeks we ran a gauntlet of people waving dead fetus posters in our faces.

I don't want to tell Faith's mom her decision is wrong. I don't wan't to go to her blog and tell her her she's dumb. I don't want to pass laws forcing her to abort a malformed fetus. I don't condemn her to hell for prolonging her shell of a baby's life. I don't presume to pass judgement on her.

But Faith's mommy is just one star in a whole fucking constellation of forces that have conspired to shove their theocratic morality into our house and our doctor's office. We decided, out of love, to do what we thought best for our baby, and people like Faith's mommy, and the people Faith's mommy likely voted for made it almost impossible to act according to our concience. And you fuckers made my wife cry, when we already had so much else to cry about.

That is why I'm furious. I hope you'll forgive me if I can't muster too much empathy.
posted by werkzeuger at 11:08 PM on April 21, 2009 [103 favorites]

No, actually, it was just me making a mistake. Didn't edit in order to prove my point

Fair enough.

Like aeschenkarnos, it was snips on Google of the ED entry and the Ubersite one that caught my eye as horrific, and that's what I interpreted edrnjevich as referring to. I think fivefreshfish is right, it's better if that comment is read straight on from anastasiav's which gives it context.
posted by andraste at 11:09 PM on April 21, 2009

Yeah, but it's a pretty FUCKED UP thing to be blogging about. I can't imagine the kind of mind that would choose BLOGGING as a response to a situation like this. It makes zero sense. None.

She's not keeping a blog about her dying infant, she's keeping a blog about her daughter. In the Llama house, we have a website for our dog, which I tell you is hilarious to the seven people a month who visit it, and we publicly post baby llama pictures on Flickr. Not for any other reason than, this is our family, here, we're sharing it, and it's fun to share it.

She's doing it, I'd guess, for some of those reasons with the added measure of it being enormously validating. Metafilter comments, if she's reading them (and I hope she's not) are not the first place this woman has been told she doesn't really have a baby. My guess is her doctors tried to gently tell her this, or maybe family members, etc.

Posting the pictures is probably cathartic and validating: See, this is my child, and she exists. Here I am, holding her.
posted by A Terrible Llama at 11:44 PM on April 21, 2009 [1 favorite]

I read through this blog. I have no love for this woman's philosophical point of view or her need to publicize her private pain as an act of testimony. But I do not think she is entirely out of touch with reality (even though her and I exist in two seemingly different realities)... as evidenced by her having a DNR:

I was expecting them to turn me away at the hospital because of her DNR order

Clearly, beside the crazy x-tian talk, she has some sense that her time is limited with her child and that there will be no heroic measures taken in order to save Faith. I don't see how this is all that different than keeping someone alive who is in a vegitative state and on machine support.

I only wish that this were left to be a private (obviously with the support of her family and friends) time for Myah.

I feel partly disgusted with myself for having read it, like I am some peeping tom.
posted by sundri at 12:32 AM on April 22, 2009 [1 favorite]

And you fuckers made my wife cry, when we already had so much else to cry about.

Oh god, werkzeuger, this brought tears to my eyes, and I'm really sorry for everything you had to go through. What a terrible experience, made worse, as you say, by those who would presume to impose their religious "morality" on you and restrict your very personal choices.
posted by JenMarie at 1:14 AM on April 22, 2009

Something that all of those calling for organ donation should realize is that babies with anencephaly can not donate their organs. http://www.cps.ca/ENGLISH/statements/B/b05-01.htm

'Can anencephalic children be organ donors?

Theoretically they can. In practice, there are certain problems.
The science of organ grafting in newly-born babies is incipient; its medium-term results are not well known, whereas its long-term results are not known at all. The organs of an anencephalic child can only be removed if the child has been certified dead. However, the criteria that define cerebral death cannot usually be applied to children under 7 days old. Before cerebral death is confirmed, the organs of such children may become so damaged that they are unfit for organ-donation. Anencephalic children do not have a rear brain but they do have a forebrain which usually functions normally at birth. The forebrain dies slowly and other organs may die in the intervening period of time. It has been observed that clinical cerebral death (complete absence of reactions and reflexes and absence of spontaneous breathing) almost always occurs after the heart has begun to fail. Therefore anencephalic children would only rarely be able to donate organs"


So that throws out her being selfish about her daughter's organs, as she couldn't even if she wished to.

I am completely disgusted by the lack of humanity that many of you have shown in this thread. Has anyone ever thought that the main reason she is blogging is to: a) allow her family and friends to be kept up to date, b) allow her to have a record of her daughter's life from before her birth through her death, c) as a means to grief.

There are as many different reasons for people blogging as their are blogs. This young woman's reasons are related to her dealing with severity of her daughter's condition. If you can't understand it, or don't wish to, click the x up there in the corner as no one forced you to read her blog, look at her pictures, or look at her videos.
posted by SuzySmith at 1:44 AM on April 22, 2009 [2 favorites]

I first read about this condition in that NYT article mentioned above. it's good, read it.

Most couples choose to have an abortion when they learn that the fetus has a fatal condition. But experts say about 20 to 40 percent of families given such diagnoses opt to carry the pregnancy to term, and an increasing number of them, like the Kilibardas, have turned to programs called perinatal hospice for help with the practical and spiritual questions that arise.

It's this issue, uncontaminated by interweb crap like this poor blog is.
posted by melissam at 4:40 AM on April 22, 2009 [1 favorite]

Profound sympathy for the mom, who is being nothing more than human in her attachment. What you would have done is irrelevant here. Profound disgust at many of the commentators here, snarky judgemental creeps.
posted by fcummins at 5:05 AM on April 22, 2009

I am completely disgusted by the lack of humanity that many of you have shown in this thread.

There's no lack of humanity to be found in this thread unless you have a really optimistic view of what humanity is. I pity this woman and feel that she has every right to deal with her sad situation as she sees fit, including blogging about it. I wish her luck. As for the comments here that some see as inhumane or insensitive, people do sometimes react to horrors with laughter and mockery. It's not all that rare a response, and it doesn't necessarily indicate a complete lack of compassion. Not always, anyway.

Her wishing for people leaving unkind remarks to burn in hell is just the usual dimestore fundie spew. She gets some kind of comfort out of it. Oh well. We're just some messed up critters, no matter how you look at it.

Quite an interesting thread.
posted by metagnathous at 5:41 AM on April 22, 2009 [4 favorites]

I first read about this condition in that NYT article mentioned above. it's good, read it.

Thanks for the link - the article is good, the pre-natal hospices a sensible idea, and the parents braver, frankly, than Faith Hope's mother. Here's the piece's coda, in the words of one of the parents with an infant in hospice care:

"I want to go through this with my eyes open. I want to feel every ounce of pain, of happiness, because if I avoid it now, it will come back to bite me. I want to experience grace. What does that mean, because it's such a vague term? I'm still trying to figure it out. I think I'll experience it when this event comes complete when she passes."

Faith Hope's mother, however, displays only optimism (and a few flashes of anger). She describes her anencephalic infant as continuing "to thrive" and "a little more advanced for her age" (three weeks old at the time of writing) and maintains that "she is functioning on a conscious level" even after seeing the CAT scan that confirms the diagnosis of anencephaly. She tells us that terminating her pregnancy after the diagnosis "to some people [...] would be a difficult decision, but it wasn't for [her]," which doesn't imply much reflection. She even writes, "Yesterday, when her bandage was being changed, Faith opened up her big blue eyes and saw her Mama!!! :)", although her baby has nothing with which to process her optic nerve's signals. This is not the record of someone trying to endure a tragedy with clear vision, but someone asking, perhaps only unconsciously, for approval out of religious conviction rather than simple human pity or sympathy.

In her later entries, when she lords over her readers that "God is on our side", contrasts atheists with Satan, and that the unsaved are "in for a good long (and well-deserved) burning", it becomes obvious that this blog is about not only prolonging the existence of her terminal infant, but also her trying to reassert her worldview. "It's the kind of miracle," she writes, "that makes atheists scratch their heads." No, just shake our heads in sadness and pity.
posted by Doktor Zed at 5:53 AM on April 22, 2009 [3 favorites]

And it occurs to me that similarly my post is about reasserting my own worldview in the face of this tragedy. Even the choice of the word "sensible" to describe the post-natal (not pre-natal) hospices is a giveaway of my rationalist outlook (the 18th-century use doesn't count). "Compassionate" would have been better. Also, it should read "She tells us that not terminating her pregnancy". (I really shouldn't post in the morning without a full tank of coffee in me.)
posted by Doktor Zed at 6:32 AM on April 22, 2009

Does anyone deform the babies down here?
posted by shii at 6:34 AM on April 22, 2009

So don't mock this mother. She's doing the brave, hard thing. Let her enjoy the time she has. She's knows its short.

While I agree that she does not deserve mockery, I don't think that clinging to her baby and the false hope that there will be improvement is the brave thing. It may be a very natural thing, but the bravest thing she could do would be to accept reality and let go.

Maybe through her faith she'll find that "God had a purpose" in this event. Maybe that purpose will be to help other mothers face harsh reality bravely too?
posted by Pollomacho at 6:38 AM on April 22, 2009

I only just got a few minutes to sit and look at Myah's blog and it is nowhere near as horrible as I expected. She writes with love about her daughter, the photos I saw were tasteful with clothes and hat (admittedly, I have not read all the blog so perhaps I am missing some horrific earlier posts and photos that are bringing out the hate in others).

Have you ever driven a car and started to hydroplane and pumped the brakes only to continue going forward? And you get that flash of "My foot is on the brake, why isn't the car stopping?" It is a funny disconnect between the reality you experience 99.9% of the time and the one exception. Well, being with an anencephalic child (or any brain dead person really) is like that. They LOOK the same, they have movement, and they are breathing. It seems incomprehensable that this is the one person you will meet that day, that year, in your life, that doesn't have a mind, not now, not ever. Because things look so normal, and yet ... they aren't, in some hidden way.

As others have pointed out, a lot of connections can be drawn between how Myah is public with her dying daughter and that it is really only recently that women have publicly acknowledged miscarriages and stillbirths. I am pretty open about my daughter's death, it actually comes up quite frequently because people ask how many children I have and when I say four (because saying three to me seems like I am being deceitful), if the next question is their ages I then explain about her death. If they are women of child-bearing age I also mention that folic acid, I vitamin I did not take during my pregnancy, reduces the risk of neutral tube disorders (such as spinda bifada and anencephaly) by 70% so if only one woman out there averts the same tragedy by taking a pill she hadn't realised was so important I feel like Adelaide's death was good for something. When I am talking about her death it is amazing how many women break down because have also lost children but never told anyone beyond their partners and immediate family. They all felt society preferred they keep their grief quiet and out of the way so it wouldn't make anyone uncomfortable. As a society, we don't do grief very well, especially when it isn't a "good death" after a long life.

Although I am an atheist and do not believe in an afterlife after I had my anencephalic daughter I wondered how people with faith coped. If heaven is only inhabited by sentient beings I can see how a Christian that believes life begins at conception can be comforted by the thought that their miscarried or stillborn baby is in heaven but if your child is in the womb without a brain, without a mind or ability for sentience then how can an anencephalic baby go to heaven according to the logics of Christianity? That being said, for all my logic, the day she was buried it rained in the evening. If I had been alone, and not trying to keep up the appearance that I was "coping well", I would have driven the hour to her gravesite and laid down on her grave because I didn't want her to get wet. With grief, all logic flies out the window.

Thank you SuzySmith for the info about organ donations. When I asked to donate her organs half an hour before she was born (which is when I found out she was anencephalic) and I was refused I assumed it was because the genetic damage was system-wide in her.
posted by saucysault at 7:17 AM on April 22, 2009 [42 favorites]

I don't think that clinging to her baby and the false hope that there will be improvement is the brave thing.

Seriously. Much like some others, re: the "inhuman" comments in this thread, I can't even put myself in a frame of mind where calling her brave even makes sense.
posted by adamdschneider at 7:29 AM on April 22, 2009

I don't think calling her brave, or cowardly, or foolish, or nuts, or any of these descriptions. This is how she grieves for her child. It's not how I would grieve, and that's OK. Grief takes many forms.
posted by Mister_A at 7:33 AM on April 22, 2009 [2 favorites]

Forgot to add "makes any sense" after the word "descriptions". I grieve for my ruined comment...
posted by Mister_A at 7:34 AM on April 22, 2009

If they are women of child-bearing age I also mention that folic acid, I vitamin I did not take during my pregnancy, reduces the risk of neutral tube disorders (such as spinda bifada and anencephaly) by 70% so if only one woman out there averts the same tragedy by taking a pill she hadn't realised was so important I feel like Adelaide's death was good for something.

Yes, this. A thousand times, this. Taking folic acid, especially during the first trimester, is extremely important! My wife's OB/Gyn put her on prenatals before we ever started trying, just to be sure. She was over 35, so her OB said it good insurance.

Neural tube disorders (NTD's) are multifactorial. Among their possible causes are genetics, maternal obesity, placental issues or folic acid deficiency. But taking a single daily folic acid supplement can help decrease a baby's overall risk of developing with an NTD by over 65%.

With grief, all logic flies out the window.

Truer words were never spoken. I have a number of friends whose children never made it home from the NICU. It's just devastating.

Saucysault, my deepest condolences for your loss.
posted by zarq at 8:11 AM on April 22, 2009

I am sad for this woman that she had a baby who was born without a brain, whose body will die soon, and who will never have a thought. Caring for that little body may well be her best way of grieving and working through this horrible experience.

That said, all of her public speculation about how maybe her child really has a brain, and doctors don't know, and blah blah blah seems to me to be actually cruel to other people pregnant with anencephalous fetuses. If it encourages even one person to continue a pregnancy when it might be even harder than terminating it, because that one person is "hoping for a miracle," that would be another tragedy.

However, I don't think this young woman has the information to assess that, or the presence of mind at this painful time in her life to contemplate the consequences of her comments, and I don't hold that against her because honestly, this is such a sad and wrenching story that my only feeling for her is sympathy.
posted by Sidhedevil at 8:16 AM on April 22, 2009 [1 favorite]

I am pretty open about my daughter's death, it actually comes up quite frequently because people ask how many children I have and when I say four (because saying three to me seems like I am being deceitful), if the next question is their ages I then explain about her death.

I'm not entirely sure how common it is, but FWIW, every single person I know who has lost a child does the same exact thing. They include all their children when asked, not just those who are living.
posted by zarq at 8:24 AM on April 22, 2009 [1 favorite]

"It's the kind of miracle," she writes, "that makes atheists scratch their heads." No, just shake our heads in sadness and pity.

I can't help but be reminded that it's not *that* long ago that Christians, on seeing one of the flock give birth to something like this would have said, 'That monster is the work of the Devil, and the mother is a witch who's been fornicating with Satan. Burn the pair of them!'

So I'm really glad that the ability of the faithful to tell random illnesses from the work of the devil has improved so much, and if their grasp of science continues to improve at this rate, who knows, given another 200 years or so, they might even making nonsensical arguments about creationism vs. evolution?
posted by PeterMcDermott at 8:32 AM on April 22, 2009 [2 favorites]

I'm not entirely sure how common it is, but FWIW, every single person I know who has lost a child does the same exact thing. They include all their children when asked, not just those who are living.

Not snarking, just wondering if you realize this also means that you may unwittingly know people who've lost children and who DON'T do this.
posted by hermitosis at 8:39 AM on April 22, 2009 [3 favorites]

This just in: Slime Molds Show Surprising Degree of Intelligence - A creature with no brain can learn from and even anticipate events. So, maybe Faith does have a future after all, hat0rz.
posted by beelzbubba at 9:10 AM on April 22, 2009 [2 favorites]

If heaven is only inhabited by sentient beings I can see how a Christian that believes life begins at conception can be comforted by the thought that their miscarried or stillborn baby is in heaven but if your child is in the womb without a brain, without a mind or ability for sentience then how can an anencephalic baby go to heaven according to the logics of Christianity?

In a nutshell, it's because we don't necessarily believe that the brain and the soul are the same thing.
posted by spirit72 at 9:25 AM on April 22, 2009

I can't help but be reminded that it's not *that* long ago that Christians, on seeing one of the flock give birth to something like this would have said, 'That monster is the work of the Devil, and the mother is a witch who's been fornicating with Satan. Burn the pair of them!'

Well no, they wouldn't. I was part of a team who carried out a major survey of early modern witchcraft cases and I'm still fairly well-versed in the general literature and I've never seen anything like that. If you have a source please cite it.

I have indeed seen reports of 'monstrous births' in other sources, but they were seen as strange providences warning the community to repent or foreshadowing disasters to come, not evidence of demonic intercourse and they certainly did not lead to any witch trials or burnings that I'm aware of.

Perhaps your just making a joke by using hyperbole, but there are people who'd believe that sort of stuff.
posted by Flitcraft at 9:27 AM on April 22, 2009 [5 favorites]

Argh, that should be 'you're', sorry, didn't preview enough.
posted by Flitcraft at 9:28 AM on April 22, 2009

I've never seen anything like that. If you have a source please cite it.

...10 seconds later.
posted by applemeat at 9:38 AM on April 22, 2009

I've never seen anything like that. If you have a source please cite it.

...10 seconds later.

You didn't read those links, did you? The only one where they talk about defects being the sign of a witch is about the Bariba tribe, in Bénin. Not Christians.
posted by Monday, stony Monday at 9:51 AM on April 22, 2009

Seconding Monday, stony Monday.

An extremely broad Google Books search on the general topic does not, a cite, make.
posted by palmcorder_yajna at 9:52 AM on April 22, 2009

werkzeuger, I am so sorry for what you and your wife had to go through on top of the tragic loss of your child. I hate that you had to go through all those hoops when you should have been wrapped around with loving support and respect for the impossible situation you were suffering.

saucysault, again, I am so saddened to hear about your daughter, Adelaide. I just wanted to say that I am really impressed that you have managed to work through your grief and come out the other side not only able to speak about what you've gone through but willing to take the time to tell others about the importance of folic acid for pregnant women.

I'm also thankful, and grateful, that both of you, in the face of all the judgment in this thread, felt able to come in and post about your own personal tragedies.

As for this thread, I didn't click on the blog--I just couldn't make myself do it--so feel free to mock me for my irrational sentimentality if it makes you feel superior.

Some of you, I fear, have hijacked this emotionally charged thread and replaced logical discourse with a total lack of empathy.
posted by misha at 9:53 AM on April 22, 2009 [2 favorites]

.
posted by mdoar at 10:04 AM on April 22, 2009

See this is why, even if PeterMcDermott's making a joke, it's important to tackle this because some people pick up the most enormous tosh about the witch hunts online and then, irony of ironies, they use it to demonize other people.
posted by Flitcraft at 10:09 AM on April 22, 2009

This thread is a mirror to your humanity people.

People wrap dead loved ones in their arms and refuse to let go. People agonise over turning off life support machines.

We shouldn't be looking. I can't understand why she is showing us, but if we do look, let it be with kindness.

It's times like this that LOLXTHIANs have a point, because some people deserve to burn in hell.
posted by fistynuts at 10:11 AM on April 22, 2009 [3 favorites]

see you there, fistynuts.
posted by kuujjuarapik at 10:17 AM on April 22, 2009

No one denies that Faith's mommy is dealing with SERIOUSLY HEAVY shit. So why did she create the site? What was she expecting? It's not like the nasty commenters came up to her on the street or called her house.

Look-- she's made this site as a way to be part of a community. The rest of the internet really isn't invited; we're peering in the windows. Follow the links on her blog, and you'll find other blogs written by parents of anencelaphic babies. They have a forum, too. The purpose of this blog is sharing with those who have experienced a simliar tragedy and for mutual support. What she is going through is terrible, but how much more tragic if she was doing this in isolation?

I find her enduring love for her child to be deeply, fundamentally, human. I respect it. I hope that I would have done no less for my child had he been born with severe physical challenges. There's a tremendous power in devoting oneself so completely to caring for another human being; a sense of clear and trascendent purpose. This young woman will be forever changed by this relationship, and the haters can suck it. It's love, it's not grotesque, it's not apalling, and it doesn't call for judgement; it calls for shutting the fuck up.
posted by jokeefe at 10:26 AM on April 22, 2009 [7 favorites]

they certainly did not lead to any witch trials or burnings that I'm aware of.

This did happen in Puritan New England. Miscarriages and stillbirths were seen as evidence of heresy against both Mary Dyer and Anne Hutchinson. John Winthrop even went and dug up Mary Dyer's baby in a public spectacle.
posted by lemuria at 10:28 AM on April 22, 2009 [1 favorite]

No one denies that Faith's mommy is dealing with SERIOUSLY HEAVY shit. So why did she create the site? What was she expecting? It's not like the nasty commenters came up to her on the street or called her house.

She says herself why she wrote the blog. I've written things on the internet that someone else could have mocked because it honestly never occurs to me that people can value the "zing!" of their faceless snark over the hurt they cause a real live human being.
posted by saucysault at 10:38 AM on April 22, 2009

This did happen in Puritan New England. Miscarriages and stillbirths were seen as evidence of heresy against both Mary Dyer and Anne Hutchinson. John Winthrop even went and dug up Mary Dyer's baby in a public spectacle.

Heresy, not witchcraft. And they were heretics; they professed a faith other than the puritan faith.
posted by Monday, stony Monday at 10:40 AM on April 22, 2009

As for why the mother of Faith, the anencephalic baby, blogs publicly about the situation, I've been giving that some serious thought.

And here's what I've come up with: imagine you're a woman expecting a baby, and you're happy about it (a stretch for some of you, but try to get there with me).

You call your parents excitedly. Tell all your friends, as people do, that you're pregnant. You go through morning sickness and pregnancy hormones turning you into an emotional mess. You start to "show," and complete strangers want to come up and feel your stomach. They ask you when you are due, is it a boy or a girl, do you want to be surprised, ask if you are going to breast of bottle feed, tell you all their birth stories (some of them pretty traumatic), wonder aloud if you will be able to go natural or have to have a cesarean, and it's like you've joined some kind of club, the expectant parent club.

Meanwhile, you're shopping for baby clothes, re-doing a room and making it into a nursery while your friends hold a baby shower. You get caught up in the rush of maternal love and nesting and more hormones, all designed by nature and evolution to help mom and baby bond. You feel the baby kick and move inside you, indulge in rosy daydreams of life with your child, watching her grow up and become a young woman and then marry and all the rest, because that's what Moms are supposed to do.

And then tragedy strikes and the baby is born with this horrible condition, and you have to deal with a complete reversal of fortune, planning a funeral instead of celebrating a birth.

And one of the things that makes it even harder are all those well-meaning friends. Because all of these same people who took such an interest in your pregnancy are now coming to you, asking about the baby. When was she born, how old is she now, do you have any pictures?!

My baby? My baby is...well, she's in limbo. Not dead, no, or at least not technically. But not living, either. She's somewhere between living and dead, thanks. It could be days, or even weeks, that death sentence hanging over her head (and please, please don't ask me which I'm hoping for. I couldn't bear for you all to think I'm a monster, on top of all the rest of it).

Dealing with all of the raw emotion and having to tell people, over and over again, what you are going through...I'd imagine it gets very draining after the first time, let alone the fifth, sixth, tenth, what have you.

So you make a blog, and you pour all that emotion into it instead, and you tell your friends, please, to refer all future unknowing blunderers there instead.

Yes, I can see it happening that way.

I had a friend who had twins who were stillborn. She grieved, and tried to get through--and a pediatric nurse, who I guess was well-intentioned, dressed the little dead babies up in hats and clothes and even tiny booties and brought them to her, wanting her to hold them while the nurse took pictures. And of course she freaked out.

Frankly, whatever anyone has to do to get through all of this is fine by me.
posted by misha at 10:48 AM on April 22, 2009 [4 favorites]

I've been going back and forth about whether I wanted to jump into this conversation. But I feel like I can kind of appreciate both sides. Like werkzeuger, I too, have had an all to intimate experience with losing a child to prenatal hydrocephaly. The twist, however, is that I was pregnant with fraternal twins when I found out that my son had this problem. His sister, Sophie (who've I've posted about in the past), was perfectly healthy.

Harry suffered from severe aqueductal stenosis. I found this out at my 19 week ultrasound, when I originally was going for routine testing where, among other things, you can find out the gender of your baby (or babies as was the case). I still remember the technician taking all these pictures of him again and again, and then telling me that he wasn't 'cooperating'. She had me get up and walk around, then get back on the table, followed by more pictures. She then left the room and came back with the perinatologist. He took one look and asked me to follow him to his office. I took one look at Mr. dancinglamb and just *knew* there was something wrong.

The perinatologist immediately went into this whole schpiel about reducing the pregnancy straight away. Now, I am emphatically pro-choice, but I wanted answers. I didn't believe him. I SAW Harry sucking his thumb, and kicking Sophie, and kicking me. I saw his ventricles and they weren't that enlarged. Yet. I wanted more tests. I was not ready to jump to conclusions. The perinatologist acquiesced and agreed to send me for an amniocentesis for both babies to determine if this was related to a genetic anomaly (as well as to make sure that Sophie was OK). We did the amnios, we did the genetic testing, we went to specialist after specialist. I even looked into inter-utero surgery. I wanted to know what I was up against if I decided to carry Harry to term. Some of the specialists said, well, he could have mild learning disabilities like dyslexia (well, OK, my brother has dyslexia, I can deal with that). Some of them said he'd be a vegetable and live a normal life span (something we didn't want for him or us). Throughout all these specialist visits, I still kept going for the ultrasounds, hoping against hope that the doctors were just WRONG and that the duct would widen and it would all be better. But each time, Harry's ventricles were just getting larger and larger. The head of neurosurgery at a top Children's Hospital, who had done several hundred surgeries specifically for Harry's problem, took one look at Harry's MRI and told me that he'd likely live for a few hours, probably with great difficulty and we stood a very strong chance of losing Sophie. How could my answer have been any clearer but my world have gotten any darker? Yet, Harry was still kicking me and his sister, and still growing and still in my belly.

New York State has a 24 week gestation limit on pregnancy reductions/abortions. On a crappy, rainy morning of August 29, 2002, I had the doctor check Harry's brain one more time. His ventricles had become so enlarged, there was no brain matter to be seen on the ultrasound. He was still sucking his thumb, still kicking me, and still kicking Sophie. His heart stopped around 10:30am.

Harry stayed in my belly and kept Sophie company until she was ready to come out four months later. I had a c-section due to some cardiac issues I have, and I was asked whether or not I wanted to see him. I chose not to. I asked the nurses to try and get a hand or foot print, or a lock of hair. God knows they tried and for that I will always be grateful, but they weren't able to do it. His body was mostly reabsorbed back into mine, back from where it came.

And Sophie's birth was most definitely bittersweet. I had this most magnificently beautiful and perfect child. Only there should've been two. Instead, she has a brother that looks down from above to keep her out of trouble.

So, when I read the blog about Faith, I could understand a little bit about how Myah is just so *desperate* to hang on to whatever little bit of her daughter she has. I can absolutely identify with her when she wrote that she saw her child moving, sucking, kicking and being told in some off-hand manner by a random doctor that it's 'just a reflex'. I cannot even begin to tell you how badly I wanted to scream and shout from the deepest part of my soul that the doctors were wrong. All the Christian-fundie shit aside, who are we to judge her and the personal hell that she is in?
posted by dancinglamb at 11:05 AM on April 22, 2009 [44 favorites]

As far as I can see these births were understood as providential judgements (as I'd expect) on Hutchinson and Dyer for their 'heresies'.

"And see how the wisdome of God fitted this judgement to her sinne every way, for look as she had vented mishapen opinions, so she must bring forth deformed Monsters' - Winthrop

The births did not lead to witchcraft trials, though as this was a high-profile smear campaign, I wouldn't be surprised if there was the odd insinuation of witchcraft, because that's the sort of thing it's very handy to accuse heretics of, but you wouldn't get that under normal circumstances. Using a tragic 'providence' as a stick to beat someone with in a theological dispute about Antinomianism is not the same as a general belief that any mother who gives birth to a very deformed child is a witch and that both mother and child should be burned.
posted by Flitcraft at 11:09 AM on April 22, 2009 [1 favorite]

saucysault, my condolences for the loss of Adelaide. I am most impressed that you have been able to maintain an impressive level of grace and dignity amongst some of the comments here.

Hugs to you.
posted by dancinglamb at 11:10 AM on April 22, 2009

BTW I'm a bit uncomfortable about pursuing a historical tangent when people are sharing heartfelt stories about losing babies. It doesn't seem right.
posted by Flitcraft at 11:18 AM on April 22, 2009

With grief, all logic flies out the window.

There it is. For this I relinquish any ideas about whether someone is acting crazy or not. I don't think I'd do it the way Faith's mother would, handle grief her way, but in all honesty I haven't the faintest not the faintest idea if that's true.
posted by From Bklyn at 11:57 AM on April 22, 2009

Thank you, werkzeuger, SaucySault and dancinglamb, for sharing your experiences with us. They meant a lot to me.
posted by phearlez at 12:22 PM on April 22, 2009 [1 favorite]

And then tragedy strikes and the baby is born with this horrible condition, and you have to deal with a complete reversal of fortune, planning a funeral instead of celebrating a birth

misha: That's not what happened here; the anencephaly was diagnosed via ultrasound at 19 weeks.
posted by longsleeves at 2:36 PM on April 22, 2009

That's not what happened here; the anencephaly was diagnosed via ultrasound at 19 weeks.

Longsleeves, whether someone makes this discovery 19 weeks into a pregnancy or 40 weeks into a pregnancy, I think misha's point still kind of applies....
posted by EmpressCallipygos at 4:03 PM on April 22, 2009 [2 favorites]

If you go back, to her first posts just after finding out about her daughter's condition (as for the debate on that, dna would certify it is absolutely human, and female, so daughter makes as much sense as anything), she talks about finding another blog. This was kept by a woman in the same situiation, who had the "blessing" of her child surviving for five days. She mentioned how much comfort it brought her.

I would imagine, after reading that, she thought perhaps others would be equally comforted if she also recorded her experiences. I'm pro choice, completely. It was her choice to carry this child to term, and I respect it. But I admire that she decided to put her pain and suffering out there in the hopes of offering some measure of comfort to other people.

I don't think she ever would have imagined to still be blogging months later. From her pregnancy writings she would have been thrilled to have just a few days.

As for the organs... well, forced organ donation is about as tasteful as forced abortion or forced pregnancy. But beyond that, if the normal death includes heart failure, what option does she have? If she stopped feeding her, well, wouldn't that damage the kidneys at minimum? Starvation isn't a pretty way to go, and it's not easy on the body. There's no breathing tube, and Faith is gaining weight. So... should she put a pillow over her infant's face? I mean, what really do you suggest she do?
posted by Kellydamnit at 4:43 PM on April 22, 2009

This is so intensely private, so far beyond the realm of things Other People Should Judge, it's unseemly to be looking at it.

I agree. Intimate and powerful. Facing images of suffering or loss is difficult for most people. Sometimes, when one does not turn away, avert the eyes, turn to the next page in the magazine, the viewer is not just sickened or sadened, but moved. Faith (in God or humanity or one's own capacity to love) is stirred. In reading Myah's blog, it is clear that she is a person of deep faith and offering her story and the videos of Faith are her way of sharing her faith. Proselytizing, if you will, though that word has more of a negative conotation these days than she deserves. She seems genuinely surprised that some people have responded with "hate" messages (are the senders really so engaged in the story as to be feeling active Hate, or are they just jackasses trying to be clever?). Naive? Yes, but she clearly feels so much love for this child and from her God that perhaps she assumed everyone would be feeling the love?

Bravo, Joe Beese, for getting us to actively seek out (or at least click Play on) images that will make us uncomfortable.
posted by njbradburn at 5:47 PM on April 22, 2009 [1 favorite]

Longsleeves, whether someone makes this discovery 19 weeks into a pregnancy or 40 weeks into a pregnancy, I think misha's point still kind of applies....

misha described a scenario very different from what this particular woman experienced. This was not a sudden horror in the delivery room, that was my only point.
posted by longsleeves at 6:25 PM on April 22, 2009

Her faith boggles me. If I were religious, this is one thing guaranteed to make me renounced $DEITY and burn all of Its churches. What kind of a sick f.cking universe has It created where stuff like this happens to good people?
posted by obiwanwasabi at 7:38 PM on April 22, 2009

JG Ballard, where are you when we need you?
posted by lukemeister at 7:49 PM on April 22, 2009

I'm not entirely sure how common it is, but FWIW, every single person I know who has lost a child does the same exact thing

I never do. It isn't a big secret, I just don't like the uncomfortable burden it places on the other person. They have to be put in the role of sympathizer and I have to play the role of the griever. Therefore, I prefer to keep this information out of a casual introduction.
posted by Secret Life of Gravy at 7:58 PM on April 22, 2009 [2 favorites]

I'm not entirely sure how common it is, but FWIW, every single person I know who has lost a child does the same exact thing

Our first son would have been 17 on Sunday. Our living son is 15. We used to say we'd had two kids, but in the last few years we've usually only mentioned the living one. In our case, the time we needed to make the transition was over a decade.

Sorry for your loss, SLoG.
posted by lukemeister at 8:04 PM on April 22, 2009 [1 favorite]

The births did not lead to witchcraft trials, though as this was a high-profile smear campaign, I wouldn't be surprised if there was the odd insinuation of witchcraft, because that's the sort of thing it's very handy to accuse heretics of, but you wouldn't get that under normal circumstances.

I've no idea whether this happened in reality or not. However, it does happen in Season 2 of The Tudors, when Anne gives birth to a deformed child, and Henry's doctors claim that it's proof of witchcraft.

But I do like it when someone with genuine expertise comes along and schools people in such matters, even when I happen to be the one getting the schooling. Though I have to say, the idea that it was a sign of someone with heretical beliefs strikes me as even more primitive than the idea that it's a sign of witchcraft.
posted by PeterMcDermott at 11:57 PM on April 22, 2009

zarq" I'm not entirely sure how common it is, but FWIW, every single person I know who has lost a child does the same exact thing. They include all their children when asked, not just those who are living.

hermitosis: Not snarking, just wondering if you realize this also means that you may unwittingly know people who've lost children and who DON'T do this.

Yes, you were snarking. You might as well be honest about what you were doing.

"The sentence should have read: "I'm not entirely sure how common it is, but FWIW, every single person whom I know has lost a child does the same exact thing."

There, consider that a grammatical correction.

That said, I thought my meaning was pretty clear. Thanks for being an ass about it.
posted by zarq at 4:26 AM on April 23, 2009

I never do. It isn't a big secret, I just don't like the uncomfortable burden it places on the other person. They have to be put in the role of sympathizer and I have to play the role of the griever. Therefore, I prefer to keep this information out of a casual introduction.

Completely understandable. The folks I know in RL (7 couples, so 14 people,) just handle the situation differently. I really have no idea if that's what parents commonly do.

My condolences for your loss, Secret Life of Gravy.
posted by zarq at 4:31 AM on April 23, 2009

Her faith boggles me. If I were religious, this is one thing guaranteed to make me renounced $DEITY and burn all of Its churches. What kind of a sick f.cking universe has It created where stuff like this happens to good people?

obiwanwasabi: Maybe the response is along the lines of "What doesn't kill you makes you stronger." Maybe it's the Christian belief that human suffering is analogous to Jesus' suffering. It is most certainly somewhere in between.
posted by njbradburn at 4:31 AM on April 23, 2009

misha described a scenario very different from what this particular woman experienced. This was not a sudden horror in the delivery room, that was my only point.

And my point is that you are missing the point that where and when she suffered this news doesn't fucking matter.
posted by EmpressCallipygos at 5:51 AM on April 23, 2009

Her faith boggles me. If I were religious, this is one thing guaranteed to make me renounced $DEITY and burn all of Its churches. What kind of a sick f.cking universe has It created where stuff like this happens to good people?

But maybe after being told her child would be stillborn, or at best she could hope for a few hours, having two months is exactly the sort of thing that reinforces her faith?

I'm not a religious person, but it seems like that could go either way.
posted by Kellydamnit at 5:57 AM on April 23, 2009

Her faith boggles me. If I were religious, this is one thing guaranteed to make me renounced $DEITY and burn all of Its churches. What kind of a sick f.cking universe has It created where stuff like this happens to good people?

obiwanwasabi: Maybe the response is along the lines of "What doesn't kill you makes you stronger." Maybe it's the Christian belief that human suffering is analogous to Jesus' suffering. It is most certainly somewhere in between.

Actually, I think it's more that the one of the tenets of Christian belief is that shit happens, it's inevitable, because this world isn't ruled by God. When the bad stuff does happen, however, you don't rely on your own strength, which is limited, but instead draw your strength to make your way through the awful times by relying on God, who is a source of infinite strength.
posted by shiu mai baby at 6:19 AM on April 23, 2009 [1 favorite]

But maybe after being told her child would be stillborn, or at best she could hope for a few hours, having two months is exactly the sort of thing that reinforces her faith?

This.

I'm, at best, agnostic. But I also acknowledge that we don't understand everything about either the universe or the human body. Given that a miracle is basically defined as "something science can't explain" I have no trouble using the word miracle to describe Faith's survival.

I discovered this fact: About 25% of anencephalic children who live to the end of the pregnancy die during delivery; 50% have a life expectancy of between a few minutes and 1 day, 25% live up to 10 days (Jaquier 2006) (source) -- so at nine weeks old Faith is certainly bucking the odds. I also ran across this story of another baby in Brazil (from a pro-life website) who is now a year and a half old.

I don't find it hard to believe that different babies can be born with malformations of different severities. In checking her site this morning, she has a video up where she kisses Faith several times and Faith slowly and laboriously turns her head to face her mother and moves her mouth in what could be termed a "kissy" way back. Is this done with intent? Who knows - science tells me "probably not". But even as a well educated, rational person who understands the "science" of it all its hard for me to watch that video and not thing that Faith is responding in some clear way to her mother's touch.
posted by anastasiav at 6:52 AM on April 23, 2009

I want to acknowledge an error in my earlier comment. I thought she was American (as am I); I have since learned in the MeTa that she is Canadian. This makes my statement:

...and the people Faith's mommy likely voted for made it almost impossible to act according to our concience

both factually incorrect and sounding a bit overblown. My apologies.
posted by werkzeuger at 7:21 AM on April 23, 2009 [1 favorite]

Satan really hates it when God shows up and shows off, doesn't he? And I guess, so do atheists. . . . You can't expect to say such things about one of God's precious little children and then go unpunished, so I would repent if I were you... or you're in for it. You people posting vile things on the internet about my daughter, you are IN for it. There is a place for people with such hatred and perversion in their hearts, and believe me, it's not a place where you want to go. But that is where you are heading. In a nutshell, Jesus is your only hope. Or you're in for a good long (and well-deserved) burning. That being said, God Bless you all! Even you incredibly evil, demonized people :) P.S. See an exorcist ASAP
posted by grobstein at 9:12 AM on April 23, 2009

Given that a miracle is basically defined as "something science can't explain" I have no trouble using the word miracle to describe Faith's survival.

Why can't science explain Faith's survival? It's remarkable, sure, but not a miracle.
posted by Optimus Chyme at 11:52 AM on April 23, 2009 [1 favorite]

I'm fine with her growing it via feeding tubes or breast-feeding as long as she wants...5 months or 15 years even (though I do hope she doesn't use human resources to feed her baby-shaped plant/slime-mold). And while I wouldn't attack or condemn a distressed kid who's turning to her mythology and instincts for help, SINCE she made it (double entendre) public, I'm also fine with gallows humor.

I laughed at the reference to the Hemingway six-word story. I even made a joke about how IF someone started a "how long will faith live" betting website, they might as well start another one betting how long THEY'D live. But then, I like galllows humor...sometimes I think it's all that keeps me going (how else could I have survived eight years of Bush, or for that matter--on a similar note--a brainless baby).
posted by whatgorilla at 12:02 PM on April 23, 2009 [1 favorite]

I think SCIENCE can certainly explain it. Obviously it has enough of a brain-stem that it's vital organs are functioning. Science has helped her stay alive thus far, and it may continue to do so...no miracle there. God's little miracle wouldn't have made it this long without science. And, who knows, "she" may break the world's record for longest "living" anencephalitic "baby" which some would see as a good thing. A miracle of god. I would refrain from using the miracle term until she wins a spelling bee. That would be a miracle.

That said, I do hope she helps further brain-science by somehow growing more and more capabilities (either by generating new cells OR by the hind-brain taking over more responsibilities)--but I'm not holding my breath.
posted by whatgorilla at 12:09 PM on April 23, 2009 [1 favorite]

Flagged, whatgorilla. This: "baby-shaped plant/slime mold" really isn't helpful.
posted by jokeefe at 12:15 PM on April 23, 2009

Frankly, I think anyone who refers to this woman's daughter as an "it" is an asshole.
posted by shiu mai baby at 12:22 PM on April 23, 2009 [3 favorites]

well. i wasn't trying to be helpful--i was trying to convey what i think is a more accurate description--though you're right, i think "baby-shaped plant/slime-mold" needs qualification...maybe "baby-shaped plant/slime-mold like being" would have been more appropriate. anyway, in my view it's more accurate than baby. YMMV.
posted by whatgorilla at 12:23 PM on April 23, 2009

even "being" is too much though. "organism" perhaps. ugh. i never should have clicked on that link.
posted by whatgorilla at 12:25 PM on April 23, 2009

Flagged, whatgorilla. This: "baby-shaped plant/slime mold" really isn't helpful.

Correctness is "help" enough for me, thanks.
posted by grobstein at 12:28 PM on April 23, 2009

Thanks, whatgorilla. I was wondering what the MeTa thread was talking about and now I know.
posted by Optimus Chyme at 12:32 PM on April 23, 2009

I don't know if gallows humor is offensive to some, but my argument is basically that since she put it out here, it's open for discussion--though I'd prefer that discussion be civil, I expect a few "haters" and reaction to them (hoping they burn in hell). While I agree people shouldn't attack the poor 23 year old girl OR the organism she produced, I don't mind people arguing about the role of sentience, the utilitarian arguments of organ donation or other ethical dilemmas. The case of Faith isn't black and white, it's certainly--wait for it--a gray matter.

For example, if someone compared Faith to Wilson-the-volleyball from that Tom Hank's movie, I'd argue that that wasn't a good or helpful analogy even though they might argue that people cried when Wilson floated away and that shows how attached we can get to human-like things. Whatever. It's a ridiculous argument to have, but helps me forget the horrible sh1t I just read so that I can go on with my life. Again, YMMV.
posted by whatgorilla at 12:46 PM on April 23, 2009

I don't know if gallows humor is offensive to some

Pretty much by definition gallows humor is offensive to some. There's an open Meta thread talking about this thread and unless you'd like to turn this into "whatgorilla explains his own particular justification for making tasteless jokes/statements" [which I think you've already done] you might want to take additional commentary there.
posted by jessamyn at 1:04 PM on April 23, 2009

I have since learned in the MeTa that she is Canadian

Following your earlier post, Faith's mommy is still just one star in a whole fucking constellation of forces that have would have conspired to shove their theocratic morality into your house and your doctor's office if you were Canadian.

Canada isn't lefty never-neverland where abortion is concerned. Abortion at any point in the pregnancy is entirely unavailable in one province (unless that's changed very recently). Abortion at any point in the pregnancy is difficult to obtain in New Brunswick, where Faith's mother lives. Late term abortion more so. Private late-term abortion seems to be completely unavailable in NB, and publicly-funded late-term abortion would (like any abortion) require two physicians to certify that the abortion was medically necessary, if you could obtain the necessary referrals to one of the very small number of physicians in NB hospitals who perform abortions.

So, presumably thanks to people like Faith's mommy, you'd probably still have had to travel a long way, perhaps to another country, to terminate your pregnancy if you lived near her.
posted by ROU_Xenophobe at 1:09 PM on April 23, 2009 [1 favorite]

It seems like the meta-thread would be more for "whatgorilla explains why he had to explain his justification for defending science and, prior to that, the fact that humor can exist anywhere (except maybe in some parts of Darfur--there's probably no humor there)." I'll leave the meta-talk and name-calling to you and shua-mai-baby.
posted by whatgorilla at 1:11 PM on April 23, 2009

...
posted by cortex at 1:20 PM on April 23, 2009 [1 favorite]

I think it's premature to say that the mother is a pro-lifer partly responsible for making abortion hard-to-get; she contacted a pro-life group, and they provided her with a lawyer, which she used for her own purpose.

Sure, the pro-life group has ulterior motives. But there's no evidence that she did more than take their offer for a lawyer. And I haven't seen any pro-life propaganda on her blog.

She could, potentially, become an advocate against the right of other women to choose. She could try to use her baby as an argument for that. But she hasn't.
posted by Monday, stony Monday at 1:36 PM on April 23, 2009

It's plain from werkzeuger's original comment that he's well aware that Myah may or may not have done anything anti-choice herself.

My only point was that whatever validity his comment had, it retains in Canada.
posted by ROU_Xenophobe at 2:26 PM on April 23, 2009 [1 favorite]

I agree that there is a pro-life movement in Canada, too, and that it has some influence. I just don't think that Faith's mother is part of the "constellation".
posted by Monday, stony Monday at 3:20 PM on April 23, 2009

I discovered this fact: About 25% of anencephalic children who live to the end of the pregnancy die during delivery; 50% have a life expectancy of between a few minutes and 1 day, 25% live up to 10 days (Jaquier 2006) (source) -- so at nine weeks old Faith is certainly bucking the odds. I also ran across this story of another baby in Brazil (from a pro-life website) who is now a year and a half old.

That's why they're called "odds." I recall reading the journal of an anglican minister who explained the curious effect of many seminary students losing their faith in their second or third year of seminary at certain instutions. While conservative bible schools liked to cite it as evidence of libr'ul theology reaping what it sows, he noted that those were the years students were required to do "on the job training" -- ministering to the dying in hospitals.

There are few things as sobering, he said, as noting that no matter how much you pray, no matter how much the patient's family loves them, when doctors say, "There's a one in ten chance of survival," about one in ten makes it.

We mourn the nine and we cling to the tenth and we on the lucky side claim that the miracle is the survival of the one we know and love. Miracles are not statistical, they are personal. Logically, one can say "I beat the odds and someone else didn't," but it doesn't make being the lucky one feel any less fortunate.
posted by verb at 4:54 PM on April 23, 2009 [8 favorites]

misha described a scenario very different from what this particular woman experienced. This was not a sudden horror in the delivery room, that was my only point.

...

And my point is that you are missing the point that where and when she suffered this news doesn't fucking matter.

I give up.
posted by longsleeves at 9:59 PM on April 23, 2009

aaaaaaand scene. Cut and print.
posted by jokeefe at 11:51 AM on April 24, 2009