Choosing Thomas

September 6, 2009 5:42 AM

Choosing Thomas. Thomas was diagnosed in the womb with trisomy 13, a fatal genetic disorder. T.K. and Deidrea Laux decided to carry him to term and give him what days they could.
posted by Pater Aletheias (225 comments total)

This is too harsh, Pater. Too harsh. I need this heart of mine to live.
posted by Jilder at 5:54 AM on September 6, 2009

That was beautiful.
posted by Biblio at 5:56 AM on September 6, 2009

I'm crying.

Thank you for posting this.
posted by St. Alia of the Bunnies at 6:02 AM on September 6, 2009

[audio warning--this immediately started playing video with sound (fetal heartbeat and childbirth noises) upon loading. Article links are here and here with accompanying editorial here.]
posted by availablelight at 6:06 AM on September 6, 2009 [1 favorite]

This is a choice that I do not and cannot understand.
posted by The Michael The at 6:11 AM on September 6, 2009 [13 favorites]

I do have to say, every time I hear one of these stories framed as "God's little miracles," I worry deeply about couples like this:

The Lauxes also got a call from a Texarkana couple who'd heard of them from church friends. They were in their 20s and had just learned that their unborn baby had a fatal trisomy diagnosis.

They lacked many of the resources the Lauxes had – including specialists close to home, insurance covering every medical bill and hospice. And their preacher told them they'd go to hell if they terminated the pregnancy.

(To their everlasting credit, Deidrea and TK told the couple the decision was theirs to make, and no one else was in a position to judge.)
posted by availablelight at 6:17 AM on September 6, 2009 [7 favorites]

I couldn't watch the video, but I did read the story. And I still cried. Remarkable people; I couldn't and didn't make the choice they made, but I'm so glad they found peace.
posted by headspace at 6:25 AM on September 6, 2009

I'm with The Michael The here.

What is the point in bringing to term a baby that will die shortly thereafter, suffer, and cause intense pain and suffering in those around? This does not serve any grand purpose.
posted by dirtynumbangelboy at 6:29 AM on September 6, 2009 [6 favorites]

This is what "pro-choice" means.
posted by eccnineten at 6:31 AM on September 6, 2009 [49 favorites]

It's nice that they have that choice and can make it without someone's religious beliefs being forced upon them with the authority of law or by the barrel of a gun.
posted by stavrogin at 6:33 AM on September 6, 2009 [18 favorites]

availablelight: That was my first thought, too.

To be candid, I would be more impressed with the Dallas Morning News if they'd done a story featuring the Texarkana couple, and explaining the role their finances play in their decision (whatever it may ultimately be).
posted by magstheaxe at 6:44 AM on September 6, 2009

Around halfway through, Deidrea says something that I just couldn't believe. She says that in many ways Thomas is fortunate, that all he'll ever know is love and that he won't ever know heartbreak. I realize that this is a coping mechanism used to deal with an incredible sadness and that there's a lot going through these people heads. But that sounds far too much like something Josef Fritzel would say about the children he kept locked in his basement. I'm doing this for them, etc. It's completely ignorant of the extraordinary pain that children with genetic disorders, such as Trisomy 13 endure, and it shifts the baseline of responsibilities a parent owes a child in a terrible way.

Like many Ashkenazi Jews, I was told at a young age about Tay-Sachs, about how it works, about how I could possible be a carrier, that when trying to bring a child into the world with a partner I love, I might accidentally cause incredible suffering. It's something hard to understand but I was fortunate enough to have resources and time to think about difficult issues like this.

I don't understand the decision that the Laux made - but I don't think they had time and counseling to think about this before they were already emotionally invested in a specific outcome. To me, bringing this child into the world, knowing he was going to die, is just so unthinkable, even from a pro-life perspective.

Two people very close to me just suffered a miscarriage in the 35th week of pregnancy. There had been no complications, sometimes this just happens. As is the case with such late-term miscarriages, my friend had to have labor induced and deliver a stillborn fetus. This was heartbreaking for everyone who knew them and is something I continue to think about. The Laux had time to prepare for this outcome, did not have a baby shower, did not have normal expectations reversed, aren't suffering from the same self-recriminations. The Laux decided to postpone a problem, spent more money to fight an inevitability, and ultimately caused a significant amount of pain to a days-old child. I don't know if I can judge them for their decisions, but I cannot understand it. I wish more people had the time to think about these issues before they were pregnant.
posted by allen.spaulding at 6:47 AM on September 6, 2009 [14 favorites]

That is so wrong. It's bad enough that I spend so much of my time being embarrassed to be American, then something like this comes along that makes me embarrassed to be human.

Firstly, regarding the child at the center of this thermonuclear blizzard of dysfunctional emotion, nobody did him any favors. Even had he not had the brain damage that tags along with T21 he did not live long enough to accumulate what any of us would consider an "experience." The only good thing about this is that he probably didn't experience the inevitable pain of his brief sorry life and death in the way a fully developed child would either.

The Lauxes took the path that was absolutely guaranteed to maximize their own and their child's suffering. This is not noble, it is not good, it is not a miracle. It is a horrible example of human craziness reacting to tragedy in the least productive possible way. It is everything that is wrong with our species in microcosm.

From availablelight's second link:

Giggling, T.K. called over his shoulder. "He's got extra fingers on both hands, baby!"

"He is an overachiever," Deidrea called back.

I suppose I am in a very small minority because instead of finding this heartwarming and inspiring it fills me with abject horror, not just because so many people can summon up this level of denial but particularly at the idea that my own brain may harbor the ability to ignore reality to this degree.

Sometimes bad things just happen. They don't happen because you are wicked or because God wants to test you; they happen because the world is a complicated and hostile place and it is full of random mishaps. That is the lesson to be drawn here, and nobody is getting it. It is not strength to wallow in negative sentiment, and it is not support to enable people who are doing that. It is, however, unfortunately very human, and that's not a good thing.
posted by localroger at 6:50 AM on September 6, 2009 [80 favorites]

This is what "pro-choice" means.

Agreed. They should have that choice. However, as presumably rational human beings they should also know when not to make that choice. Like localroger, this sort of thing fills me with horror; it is not a net benefit to the child or the parents to do this.
posted by dirtynumbangelboy at 6:53 AM on September 6, 2009 [2 favorites]

I was enjoying the story up until the mention of pain medication. I couldn't watch/listen past the description of their child hanging onto life by a thread. I respect their choice but I'm a bit confused as to the point of choosing the suffering.
posted by lmm at 6:55 AM on September 6, 2009

By "enjoying" I meant "not disgusted".
posted by lmm at 6:57 AM on September 6, 2009

God, that was devastating. Thanks for sharing it.

My wife and I have three children, and each time, early in the process, we talked about what we would do if there was something terminally wrong with the baby. And we always agreed, without hesitation, that we could never abort. I am not a Christian, but I cannot make the call to end a human life.

The mother in the video puts her finger on it, right at the end: "We did not abort, because he is our son."

And that's the key. You understand that he is your son the moment you see the sonogram. Some people get 100 years, some people get 50, some people get 5, some people get 5 days. Some people will live lives of comfort, while others will have much pain. Most will be somewhere in between. But no matter what else, he is your son.
posted by jbickers at 7:01 AM on September 6, 2009 [4 favorites]

It's great that they have a choice, but ... wow, not the one I'd make.

We are all born in pain and confusion, but here it would not stop. Newborns aren't high on the immediate comprehension to begin with, so here's hoping that the infant in question at least was not aware of his own suffering. Picking out itty bitty coffins while saying that all he will be experiencing is love in his short life seems to ignore what he'd actually go through: a short, futile, miserable struggle for existence without quite enough brain power to even get a sense of what is going on. It's like a highly compressed version of typical human life, without a single one of high points, and for the life of me I cannot think of a single positive reason to go through with such a thing.

Most people would rapidly and without hesitation euthanize a puppy who was so biologically doomed; how to reconcile that with doing that to a human, even one of such diminished capacity due to age, I don't know how to make that fit without invoking some strange ideas and elevating them above the alleviation of suffering. If we are to believe their own words, they did not do it out of the sometimes insane levels of hope to which parents are sometimes (and sometimes cursedly) prone.

If one of those "angel baby" LiveJournal sites starts up because of this, I don't want to know about it.
posted by adipocere at 7:05 AM on September 6, 2009

I don't have a lot of words for this, but I'll say this much: I'm glad I'm not the only one who is unable to cast this in the same light that the parents did. To me, it seems like Thomas would have been well more aware of his pain than their love. Pain is simple, visceral and immediate. Love is something so complex that I cannot imagine that even a completely healthy newborn could have much appreciation of it at so young an age. Comfort, maybe, if the pain subsided for a time, but love? I doubt it.
posted by miratime at 7:13 AM on September 6, 2009 [4 favorites]

@ eccnineten- actually, it is. They were presented with the option of terminating the pregnancy; it was an option that was safely and legally available to them, and one that they could afford, just as the alternative option of having the kid was safe, legal, and affordable for them as well. They were apparently well-off enough to be able to afford the medical care that the baby needed, which is more than most people in America could probably say. Their only barrier to choosing to terminate the pregnancy was their religious faith and, well, desire to have the baby anyway.

Being pro-choice isn't about policing how peoples' faith affects THEIR OWN choices. It's about preventing people like the Laux's from forcing the choice they made on others, and denying other people all the resources that they had at their disposal. Some organizations use faith as a kind of emotional blackmail to bully people into carrying their pregnancies to term, and that's terrible and wrong, but it's not what's going on here.

Whether or not they made a GOOD choice is debatable. Maybe all the people talking about what a miracle it is could explain to me how it's a miracle that they basically forced their kid to live out a very short, painful life, when they had the option of sparing it that pain, in order to make their path to emotional closure easier. It just seems selfish to me.

But hey, I don't get to decide these things for other people! Because I'm pro-choice. Whee!
posted by ellehumour at 7:16 AM on September 6, 2009 [3 favorites]

Oh, fuck, sorry, I read that as "this is not what pro-choice means".

Shows what I get for commenting before I've had coffee. OOPS. Oh well. Disregard that previous comment altogether, then!
posted by ellehumour at 7:20 AM on September 6, 2009

7 weeks until my own son is born. I could not have gone through this.

My parents lost their own first son after 3 months. That they made it through that still astounds me.
posted by waitingtoderail at 7:21 AM on September 6, 2009

Oh man, this made me so veryveryvery sad. I'd never in a million years tell anyone that their decision regarding a pregnancy was a wrong one, but if I got news that my kid would have a very short, painful life, I'd feel like the most selfish asshole ever making the choice to make him go through all that, just because he's my son.
posted by 23skidoo at 7:23 AM on September 6, 2009 [1 favorite]

I haven't even clicked this yet, because it reminds me of Angie Smith's Bring the Rain. Her daughter, Audrey Caroline, had trisomy 18, diagnosed three months before birth, and died shortly after birth.
posted by roomthreeseventeen at 7:33 AM on September 6, 2009

What is the point in bringing to term a baby that will die shortly thereafter, suffer, and cause intense pain and suffering in those around? This does not serve any grand purpose.

.

If that's your baby, your son, and that's the only time you ever get to spend with him? That's the point.


In a situation like this, there is no way to avoid pain. They chose to spend the brief time they had with him together, holding him, loving him.
posted by St. Alia of the Bunnies at 7:42 AM on September 6, 2009 [3 favorites]

It seems to me that the parents' desire to spend time with their child is more important to them than their child's pain. Seems wrong to me. But luckily I don't have to make these choices.
posted by lupus_yonderboy at 7:47 AM on September 6, 2009 [7 favorites]

Honestly, watching the video, the child didn't seem in pain or distress to me. And they did have morphine and oxygen to give him, keeping him comfortable.
posted by St. Alia of the Bunnies at 7:49 AM on September 6, 2009

I'd feel like the most selfish asshole ever making the choice to make him go through all that, just because he's my son.

... and I would feel selfish making a decision that I believe isn't mine to make, just to avoid feeling like an asshole.
posted by jbickers at 7:50 AM on September 6, 2009 [5 favorites]

It seems to me that the parents' desire to spend time with their child is more important to them than their child's pain. Seems wrong to me. But luckily I don't have to make these choices.

I think that's pretty presumptuous. Who are you to judge the pain of a baby born with trisomy 13 versus being aborted?
posted by roomthreeseventeen at 7:58 AM on September 6, 2009 [3 favorites]

In a situation like this, there is no way to avoid pain. They chose to spend the brief time they had with him together, holding him, loving him.

For the parents, yes. Those parents lost their son the moment the ultrasound technician sound, "Something is wrong." But how does Thomas benefit from his parents' insistence that he live as long as possible even though he's biologically unequipped to survive? And without the ability to vote on his own fate? We don't really know if he was dimly aware of his surroundings and immune to pain, or if he was suffering from blinding agony during his short life. I know that the hard-line pro-life stance dictates that all fetal life is sacred no matter what mitigating, horrific circumstances accompany it to full-term babyness, but inflicting that philosophy on people (because they are people at that point) who cannot sufficiently convey their reception to pain and discomfort is downright inhumane.
posted by zoomorphic at 8:00 AM on September 6, 2009 [5 favorites]

Zoomorphic, that's a dangerous philosophical road to travel down....besides, it's not like his parents had him on life support or something like that (I myself am opposed to artificially extending life)...they were simply allowing him to live his natural lifespan, albeit a short one, with only enough medical intervention to keep him comfortable. I don't get the objection.
posted by St. Alia of the Bunnies at 8:03 AM on September 6, 2009 [1 favorite]

To be candid, I would be more impressed with the Dallas Morning News if they'd done a story featuring the Texarkana couple, and explaining the role their finances play in their decision (whatever it may ultimately be).

Maybe they tried to do one. It's very likely that the Texarkana couple didn't want to be the subject of a feature.
posted by orange swan at 8:12 AM on September 6, 2009

The Lauxes took the path that was absolutely guaranteed to maximize their own and their child's suffering. This is not noble, it is not good, it is not a miracle.

Repeated for truth. The child did indeed seem to be in distress, many times. The only thing that baby experienced was pain.

I would feel selfish making a decision that I believe isn't mine to make, just to avoid feeling like an asshole.

Is this what happens when you believe in god? You don't take any responsibility for the things you are, in actual fact, responsible for? That child was in no pain as long as he was in the womb; the kindest thing would have been to make sure he didn't experience anything outside of it.

I have tons of sympathy for these people, but I'm aghast at any psychological wrangling you can come up with it make it into a good thing. This is cruel. There was no good solution to this one.
posted by Hildegarde at 8:14 AM on September 6, 2009 [14 favorites]

Those parents lost their son the moment the ultrasound technician sound, "Something is wrong."

There is something wrong with my elderly grandmother, who is currently in a nursing home. She is confined to a wheelchair, having lost the use of one arm and one leg in the aftermath of a stroke years ago. She is on a daily battery of medications, without which she would be in constant pain. She is in emotional pain, knowing that she will never be able to go back to the beloved farm where she spent 80 years. She will spend her remaining days - who knows how many, perhaps hundreds, perhaps five or six - dependent on machines and drugs to keep her alive and out of pain.

Have we "lost her"? Do we end her life? I'm impressed that you have the emotional and mental fortitude to decide with such dispassion when it is time to end a life. I do not.
posted by jbickers at 8:17 AM on September 6, 2009 [8 favorites]

Being pro-choice does not mean you need to agree with the choice.
posted by Astro Zombie at 8:25 AM on September 6, 2009 [32 favorites]

That child was in no pain as long as he was in the womb; the kindest thing would have been to make sure he didn't experience anything outside of it.

Um ... not to be flippant, but the first part of this is true for 100% of children. The second part, when taken in that context, is utterly terrifying. (Especially if you embrace the Buddha's view of pain as inevitable for all.)
posted by jbickers at 8:26 AM on September 6, 2009 [1 favorite]

Honestly, watching the video, the child didn't seem in pain or distress to me.

Call Bill Frist, we have a medically sound diagnosis. Even if you aren't projecting your ideologically predetermined views onto this child, let's just assume you're wrong. Let's state for the record that beyond any doubt, Thomas was in excruciating pain all five days of his life. That this was a known fact before he was born and was completely unavoidable - that no substantial medical mitigation of this pain was possible.

I'm honestly interested - would your views change?
posted by allen.spaulding at 8:27 AM on September 6, 2009 [1 favorite]

Also, the issue of fetal pain is a highly contentious one. In the past few years, pro-life forces have been trying to front the issue and argue that fetuses can feel pain and that abortion is therefore unnecessarily cruel, arguing that the fetus ought to be anesthetized (something which is never medically indicated and is particularly unsafe for the woman in question). In this discussion, it seems like pro-life individuals are arguing that fetuses do not feel pain. I find this odd, perhaps.
posted by allen.spaulding at 8:29 AM on September 6, 2009 [1 favorite]

Have we "lost her"? Do we end her life? I'm impressed that you have the emotional and mental fortitude to decide with such dispassion when it is time to end a life. I do not.

Comparing your 80-year-old grandmother to a brain-damaged, non-viable fetus - doesn't this seem strange to you? For one thing, have you considered that, just conceivably, your grandmother might get a voice in there and not you?
posted by lupus_yonderboy at 8:34 AM on September 6, 2009 [9 favorites]

But Thomas WAS viable. He did live outside the womb. Maybe not for as long as other people, but he did live.
posted by roomthreeseventeen at 8:38 AM on September 6, 2009 [3 favorites]

lupus_yonderboy -- indeed, my own reaction to that post was (having seen all four of my grandparents pass) to wonder if anyone has asked Grandma whether she would prefer a short return to her farm to a long stay in the hospital. I would wager a substantial sum of money that I could guess the answer, and it's not one that jbickers would like.
posted by localroger at 8:39 AM on September 6, 2009 [2 favorites]

jbickers: And we always agreed, without hesitation, that we could never abort. I am not a Christian, but I cannot make the call to end a human life.
... and I would feel selfish making a decision that I believe isn't mine to make, just to avoid feeling like an asshole.

I'll never understand this attitude. Not the opposition to aborting — that's entirely personal. But this idea that you can avoid having to "make the call". In deciding to have the children you had, and not to abort the pregnancies, you made the call. You made the ultimate decision involving life and death. You took life and death into your own hands and you made a choice. You don't get to pretend that you didn't, just because you chose option A over option B.
posted by game warden to the events rhino at 8:39 AM on September 6, 2009 [23 favorites]

I don't mind what the choice is - I'm sure that the baby had pain medication, etc. to help ease him into death. What I DO mind is what localroger mentioned above, that "It is not strength to wallow in negative sentiment." I am very weary of people treating these kinds of stories as if the parents are very strong and noble for doing what they did - it's not at all noble to me. They made their choice, which like most choices involving children, is a selfish one, and it's there's to make. But I wouldn't celebrate it, or act like it's inspiring.
posted by agregoli at 8:42 AM on September 6, 2009 [8 favorites]

You took life and death into your own hands and you made a choice. You don't get to pretend that you didn't, just because you chose option A over option B.

Respectfully disagree. Option B, to me, is not an option - again, for entirely non-religious reasons. "Ending a life" is not, I believe, a "call" that I as a human being am entitled to make.
posted by jbickers at 8:45 AM on September 6, 2009 [1 favorite]

it's theirs to make, sorry.
posted by agregoli at 8:48 AM on September 6, 2009

But Thomas WAS viable. He did live outside the womb. Maybe not for as long as other people, but he did live.

I wasn't able to find an outright definition of a "viable fetus" but most articles I found referred to the baby's "ability to survive once born". This baby had no ability to survive once born; in fact, he lived three days with best medical care.

Or put it another way - you're the doctor at this birth and the mother asks, "Will my baby live?" Do you really believe that "Yes" is the correct answer to that question?
posted by lupus_yonderboy at 8:49 AM on September 6, 2009

"Ending a life" is not, I believe, a "call" that I as a human being am entitled to make.

(I assume you mean "ending a human life", yes?)

It is rare, particularly in the 21st century, that people are forced to make this call, but by refusing to do so you are saying your moral comfort trumps anyone else's physical pain under all circumstances.
posted by lupus_yonderboy at 8:52 AM on September 6, 2009 [8 favorites]

Honestly, watching the video, the child didn't seem in pain or distress to me. And they did have morphine and oxygen to give him, keeping him comfortable.

For the last 30 hours of his life, his heart and lungs stopped over and over.
posted by 23skidoo at 8:56 AM on September 6, 2009 [3 favorites]

Respectfully disagree. Option B, to me, is not an option - again, for entirely non-religious reasons. "Ending a life" is not, I believe, a "call" that I as a human being am entitled to make.

I see this, but I'm not making a moral point so much as a logical one. You have the right and the freedom to abort; you choose not to do so. It may well be that for you there wasn't any debate, but your actions (conceiving and then declining to abort) got you involved, inevitably, in the big questions of life and death. I'd never dream of questioning the choice you made. What I find hard to respect is what comes across, to me, like an effort to evade responsibility for having made this choice, as if deciding to conceive and not abort were the default position, whereas having an abortion would be "intervening" in the process, somehow. But getting someone pregnant is already intervening in the process!
posted by game warden to the events rhino at 8:56 AM on September 6, 2009 [1 favorite]

Do you really believe that "Yes" is the correct answer to that question?

Of course not. But these parents (bravely, I think) decided that THEY were not the ones to sentence their baby to death.
posted by roomthreeseventeen at 8:58 AM on September 6, 2009 [1 favorite]

As I've had mere respiratory suppression before, I can think of few things which fit my idea of "distress" more than having the occasional bout of respiratory arrest. That's one of those moments where you don't feel compassion, or love, or bonding, or even something as basic as "do I have shoes on?" because your brain is busy shouting BY THE WAY SOMETHING IS UP WITH THE WHOLE OXYGEN SITUATION HAVE YOU NOTICED YOUR CHEST IS NOT MOVING AS MUCH AS IT COULD BE, at least, it does before that whole gray-chilly-fuzzy-distant-cold-tunnel-black thing takes over.

Yeah. That's distressing alright.

That baby was sentenced to death from the moment of the nondisjunction which led to it having an extra chromosome in the first place. Thomas' parents were not called to sentence their child to death; they were called to offer mercy to someone who was first and foremost a potential human being, and "their son" as a distant second or third. They put down the phone.
posted by adipocere at 9:05 AM on September 6, 2009 [27 favorites]

agregoli hits the nail on the head. Make the decision, whatever it may be, and keep it to yourselves and no one but your immediate family.
posted by Gungho at 9:05 AM on September 6, 2009 [1 favorite]

Let me also add another point which will certainly be morally abhorrent to some people here but does need bringing up.

Tens if not hundreds of thousands of dollars of medical care were expended by the decision to keep the fetus alive for a few days.

We live in a country where infant mortality is at third-world levels in many parts of the country; where potentially viable fetuses are damaged or killed for the lack of a few dollars' worth of pre-natal support.

Health-care should not be a zero-sum game - but in America, it is, thanks to the tireless operations of the "right", many of whom are the same social conservatives who applaud the actions described in the article above.

Given such limited resources, surely the ethical thing to do would be to direct them toward prenatal care, where this same money could save dozens if not hundreds of fetuses from abnormality or death, rather than direct them towards this child who cannot be saved?
posted by lupus_yonderboy at 9:06 AM on September 6, 2009 [17 favorites]

as if deciding to conceive and not abort were the default position, whereas having an abortion would be "intervening" in the process

This, precisely. As someone who finds abortion ethically abhorrent (again, for entirely non-religious, non-Christian reasons), this is precisely the default position. It is not that an abortion would be "intervening," but rather that it is a gross overreaching of my rights as a human being, to end the life of another.
posted by jbickers at 9:06 AM on September 6, 2009 [3 favorites]

Of course not. But these parents (bravely, I think) decided that THEY were not the ones to sentence their baby to death.

That's not bravery. That's blindly groping for a miracle, hoping that SCIENCE WAS WRONG, and forcing a crippled, baby-like object to fight for life so that you can cope.
posted by graventy at 9:15 AM on September 6, 2009 [7 favorites]

jbickers: a fetus is not, in fact a human being. You might believe that a fetus is as worthy as protection as a human being but as a matter of law, and as a matter of custom, a fetus is not a person.

Everyone has a slippery slope here; few non-Christian people think of the Pill (which prevents a newly-fertilized ovum from growing) as murder, most people would consider an assault on a 9-month's pregnant mother which killed the fetus to be murder, or close to.

And frankly, I don't believe you. Suppose we had the same scenario as in the article above - except that giving birth to the child would certainly kill the mother. Would you not have the abortion then?
posted by lupus_yonderboy at 9:18 AM on September 6, 2009 [1 favorite]

But Thomas WAS viable. He did live outside the womb. Maybe not for as long as other people, but he did live.

This is like saying that human beings are viable underwater.
posted by Pope Guilty at 9:22 AM on September 6, 2009 [11 favorites]

Cripes. Trisomy 13, to all indications, goes like this, according to Wikipedia (omitted information explains a trisomy):

Patau syndrome, also known as trisomy 13 and trisomy D, is a chromosomal abnormality, a syndrome in which a patient has an additional chromosome 13 due to a nondisjunction of chromosomes during meiosis. Some are caused by Robertsonian translocations. The extra chromosome 13 disrupts the normal course of development, causing the characteristic features of Patau syndrome.[vague] Like all non-disjunction conditions (such as Down syndrome and Edwards syndrome), the risk of this syndrome in the offspring increases with maternal age at pregnancy, with about 31 years being the average.[1] Patau syndrome affects approximately one in 25,000 live births.[2]

...

Manifestations and physical findings

Of those embryos that do survive to gestation and subsequent birth, common abnormalites include:

* mental & motor challenged
* polydactyly (extra digits)
* microcephaly
* low-set ears
* holoprosencephaly (failure of the forebrain to divide properly).
* heart defects
* structural eye defects, including microphthalmia, Peters anomaly, cataract, iris and/or fundus (coloboma), retinal dysplasia or retinal detachment, sensory nystagmus, cortical visual loss, and optic nerve hypoplasia
* cleft palate
* meningomyelocele (a spinal defect)
* omphalocele (abdominal defect)
* abnormal genitalia
* abnormal palm pattern
* overlapping of fingers over thumb
* cutis aplasia (missing portion of the skin/hair)
* prominent heel
* kidney defects
* deformed feet known as "rocker-bottom feet"

...

Treatment

Medical management of children with Trisomy 13 is planned on a case-by-case basis and depends on the individual circumstances of the patient. Treatment of Patau syndrome focuses on the particular physical problems with which each child is born. Many infants have difficulty surviving the first few days or weeks due to severe neurological problems or complex heart defects. Surgery may be necessary to repair heart defects or cleft lip and cleft palate. Physical, occupational, and speech therapy will help individuals with Patau syndrome reach their full developmental potential.

Of these, heart defects, meningomyelocele, cutis aplasia, omphalocele, and kidney defects (meningomyelocele is the protrusion of the spinal cord through the skin, and omphalocele is essentially protrusion of the abdominal organs through the skin) will no doubt cause the kid pain. It would have been more merciful to abort. I thought aspects of their decision were barbaric, partially because, perhaps, of their misunderstanding of the symptoms of this condition and how much pain they actually cause (morphine might not have been enough; I've been hopped up on two different narcotics and I still felt pain once, and this was from a 12-inch leg incision). It struck me as selfish that they wanted to make their child endure this much pain in his short life just so they could have five days with him.

But I am in no position to make a decision for these parents about their own child, because I am pro-choice.

The whole issue is too fucking complex, apparently, for anti-choicers to comprehend, and their continued ignorance of all the issues surrounding it infuriates and disgusts me.
posted by kldickson at 9:24 AM on September 6, 2009

And apparently some of these individuals can survive, but in Thomas' case, I don't know if the doctors gave him much of a prognosis.
posted by kldickson at 9:25 AM on September 6, 2009 [1 favorite]

The thing that kills me about this story is not their decision to have or not have the baby to term, I can't say what I'd do in that situation even though my initial reaction is that they were crazy for not terminating.
The thing I find horrifying is that it was all filmed - they knowingly had cameras/cameraperson in their house for the only days they had with their child. They filmed his death. And then they shared that with... whoever wants to watch it.

I'm sure there are dissertations being written on how reality tv has changed our culture, but this crosses a line that is much scarier than marrying someone off to the richest bachelor or winning a modeling contract. This wasn't investigative journalism, reporting on a story that happened, this was acknowledging that their horrible situation was in fact newsworthy and setting up the framework for that in advance.

And for what? I understand that if they wanted to have record of their child's life, short though it should be, then they film/shoot every second that they had with him. All new parents do that. But the delivery, the scenes where the baby stops breathing, over and over again? Who is this helping? There's awareness of a story and there's wallowing in it, and there's elbowing in on someone's misery. And there's letting someone elbow into one's misery, participate in it, exploit it, knowingly set up ahead of time.

I'm not being flip or snarky, I really just don't understand why the parents would have chosen to do this story, and to follow it through.
posted by 8dot3 at 9:26 AM on September 6, 2009 [15 favorites]

Maybe the couple has a totally different ethical framework they're dealing with. Since when has utilitarianism and the alleviation of pain become the only acceptable moral principle here? Heck, even atheists have different beliefs! The entire tone of this thread smacks of many being unable to see how any other system could even exist . . .
posted by Lord Chancellor at 9:32 AM on September 6, 2009 [6 favorites]

Lord Chancellor: surely your argument ("a totally different ethical framework") could explain any human activity no matter how distasteful?

For example, psychopaths have a totally different ethical framework - should this be some form of mitigation for their crimes?
posted by lupus_yonderboy at 9:36 AM on September 6, 2009 [3 favorites]

Lord Chancellor, my tack is one entirely of how compassionate it is to the kid whose life consisted entirely of five probably pain-filled days just because his parents were all 'HURF DURF JUST AS LONG AS HE'S ALIVE AMIRITE'. I am trying to support it with evidence; one can easily search for the definitions of the various symptoms I've described.

Then again, if I recall correctly, at least one of the anti-choicers commenting in this thread is a credulous creobot, so I am entirely sure they're going to look at this information and go 'durrrrrrr whuuuuut', since their understanding of biology is already impaired by their apparent absurd idea that the Earth is only 6000 years old, no matter how much scientific information anyone throws at them.
posted by kldickson at 9:36 AM on September 6, 2009

Also, the issue of fetal pain is a highly contentious one.

I think that it's contentious for two reasons that end up interacting to make this issue a hairy mess.

1. It's contentious because it's philosophically difficult.

Certainly two-year-olds feel pain. At what point in their life did that start? The only scenario I can imagine is that awareness of pain is an emergent property of the computation of the sort that nerves do, and so must gradually dawn on us as we become more complex. The idea of a suddenly-flipped switch that makes a developing organism start to feel pain is preposterous to me, although I suppose that is what people who do not believe in continua of consciousness must believe.

2. It's contentious because it influences our decision regarding when developing organisms acquire rights, or at least when they should be regarded with empathy.

Most people are uncomfortable with acknowledging their being the cause of pain in another, so some pro-choice activists would rather not believe that fetuses feel pain, and the couple featured in this article would rather not acknowledge that their baby was probably suffering for most of its conscious life.

If some awareness of pain grants us some rights (or makes us appropriate recipients of empathy), and awareness of pain is a continuum from "unaware" to "fully aware", then we are left with the strange situation of deciding at what rate rights are granted to an organism, or empathy apportioned. If awareness of pain somehow suddenly occurs at some point in development, then we are still left with the seemingly arbitrary choice of deciding at what stage of an organism's development do the organism's actions in response to noxious stimuli indicate mere reflexes as opposed to fully-realized pain.

Ideally, we would simply acknowledge the facts as they are, and let them factor into our moral decisions; it seems completely backward to say "well, X morally ought to be the case, so if Y would give me reason to believe X, then I will believe in Y." But since the decision of when an organism feels pain acutely enough to be worthy of rights or empathy is arbitrary anyway, people may settle that arbitrariness by going with an answer that's consistent with their pre-existing moral judgments.
posted by Jpfed at 9:38 AM on September 6, 2009 [4 favorites]

the resources the Lauxes had – including specialists close to home, insurance covering every medical bill and hospice.
- What if you don't have insurance, and you find out your fetus has a heart defect that will require surgery immediately after birth?
- What if you carry a child to term, but the child has overwhelming medical expenses?
- What if you find out your fetus has a terrible birth defect, but the doctor who performs abortions just got murdered?

I'm really pro-choice. I'm fine with the choice this family made. It doesn't sound like Thomas suffered. Who should tell any family, though, that they must carry this pregnancy to term?

It's good medical care and insurance coverage that allows this story to unfold. Pregnancies with birth defects may create serious danger to the mother's life and health. For that matter, any pregnancy carries risk. Thankfully, this woman's employer provided insurance, and the cost was probably not dramatic. But if Thomas had lived for 6 months, who would decide whether or not he should get heart surgery? And what if the insurance company's costs gets passed on to the employer, who can no longer afford to insure employees?

It's bizarre to me that the opponents of universal health care include the Christian right. Why is it okay to let Americans suffer and even die because we're too effing stingy to provide health care to every American?
posted by theora55 at 9:39 AM on September 6, 2009 [5 favorites]

Actually, in the womb, fetuses are at least heavily sedated. Kicks are just artifacts. I don't think they actually perceive pain; they might react to it as a reflex, but they are essentially not conscious.
posted by kldickson at 9:41 AM on September 6, 2009

This is very sad.

I'm not sure what I would do if I were faced with the question that T.K. and Deidrea confronted. I imagine that if it were up to me, I'd opt for early termination of the pregnancy, but I suspect my wife would want to carry the child to term. It seems like the two of them got some powerful closure from having seen and loved their child for however brief a time. The experience of childbirth and post-natal bonding is one of the most powerful emotions a person will feel in their life. I can understand their desire to know their child in that way despite his defects. I doubt I would be strong enough to do what they did, though.

It would be cool if people could refrain from casting aspersions on the metaphysical framework these folks used to make sense of their decision. Given that Christians frequently terminate non-viable fetuses and non-Christians will at times carry a child to term despite abnormalities, the religion factor here is not causal. Instead, it seems to be the thing they draw upon to give meaning to what is otherwise a horrible trauma. Unless you have confronted what they have, you are in no position to do anything but sympathize with them or turn your head.
posted by felix betachat at 9:43 AM on September 6, 2009 [11 favorites]

This thread has made my stomach knot for several reasons. I remember waiting for the genetic counselor's phone call when I was sixteen or so weeks pregnant.
posted by pinky at 9:44 AM on September 6, 2009

According to this, a very small number of Trisomy 13 survive into teenage years or even adulthood. Are those people not "viable"?
posted by roomthreeseventeen at 9:51 AM on September 6, 2009 [1 favorite]

Unless you have confronted what they have, you are in no position to do anything but sympathize with them or turn your head.

The family decided to go the major media route and expose all the details to us - which unfortunately does invite our judgements.

If they did this in the privacy of their own lives, it'd be one thing - to see this splashed out in newspapers and videos and have them lionized as "brave" etc. is quite another.
posted by lupus_yonderboy at 9:53 AM on September 6, 2009 [2 favorites]

"their misunderstanding of the symptoms of this condition and how much pain they actually cause (morphine might not have been enough; I've been hopped up on two different narcotics and I still felt pain once, and this was from a 12-inch leg incision)"

Regarding the pain that the infant may or may not have experienced, I'm sure that the parents had extensive conversations on that subject with their obstetrician(s) and other physicians involved in this process.

Your anecdotal evidence about your leg injury is of zero use here.
posted by HopperFan at 10:02 AM on September 6, 2009

I understand how it can be part of, essentially, the grieving process for the child to give birth and have a child with a face and a name that you've held, even if it's just to bury.

I can't quite get how the husband didn't kick and scream against it, though. I guess it's just because I'm a real ray of sunshine, but my first thought (never having been there) is "Kid's dead save my wife save my wife get it out NOW."

I can't quite imagine what it would be like to lose your wife under those circumstances, knowing that you went along with it or even urged it. At least the delivery room would probably have lots of sharp things to kill myself with.
posted by ROU_Xenophobe at 10:04 AM on September 6, 2009 [1 favorite]

For those of you who think giving birth to this baby and allowing nature to take its course was cruel?

Did you really think they would anesthetize this baby in utero if they aborted it? Do you not think it would be kinda painful to either be burnt in saline or cut up or however it is one terminates later term pregnancies?

Sorry, if you are going to object to them giving birth to this baby as cruelty, I don't much think you have any ground to stand on.

Meanwhile instead of making this thread yet another moratorium on abortion, can we not focus on Thomas and the love showered on him during his short life? THAT is the topic of the post.
posted by St. Alia of the Bunnies at 10:04 AM on September 6, 2009 [1 favorite]

The family decided to go the major media route and expose all the details to us - which unfortunately does invite our judgements [sic].

Seriously? This is the route you want to take here? John & Kate this ain't. And your implication that they deserve opprobrium for choosing to allow this intimate and horrible experience to be publicized is medieval, frankly.

My wife and I are thinking of having a baby. The issue of genetic abnormalities has come up in conversation between us and we have both struggled to find some common ground over what we might do in such a situation. Personally, I am very grateful to T.K. and Deidrea for having shared their painful experience with me. I don't romanticize them or even pretend that I would do what they chose to do. But seeing what they went through does certainly help to clarify things for me in a fairly profound way.

Your insinuation that these poor people have sought notoriety and that they fall thereby outside the bounds of common courtesy says far more about you than it does about them.
posted by felix betachat at 10:06 AM on September 6, 2009 [7 favorites]

Your insinuation that these poor people have sought notoriety

"Notoriety" is a loaded word, but the article is very clear that they did deliberately choose to enter the public eye and have every aspect of this thing documented - this is not an "insinuation", but cold fact.

I believe that's a regrettable choice, and I have every bit as much right to say that as they do to expose the story to the world in the first place.
posted by lupus_yonderboy at 10:23 AM on September 6, 2009 [3 favorites]

By opening themselves up to the public/media, many people will be touched by and will remember their son, who wouldn't ordinarily have ever known he existed.
posted by roomthreeseventeen at 10:27 AM on September 6, 2009

I get it. I am not a terribly religious person. I am a man of science and I work in the medical field. I wouldn't have understood this two years ago, but after caring for nursing home and hospice patients for a year, I understand now.

It is a stubborn insistence that all human life, no matter how brief, how deformed, is worth something. This may seem like a ridiculous and absurd affirmation to some of the more cool headed rationalists, but to me it is in these extreme cases when we say yes to THIS life, we are saying yes to ALL human life. If you can love and value the infant with Trisomy 13, you can find value and worth in all human beings.

Who are you to say that someone's short life, their small spark of consciousness, is not worth the struggle? Who are you to snuff it out before it has a chance? Maybe for that brief period of time, that baby felt love and warmth from the parents who refused to discard him because of what we think is a defect. Are you so arrogant to decide which humans are worth it and which ones aren't? Where do you draw the line? Science will not give you this answer.

When I saw that poor baby, I could see myself, and all of humanity. I could see our struggle, from birth to death. And on a cosmic scale, what is the difference between a life that lasts 12 hours and one that lasts 80 years? Perhaps that baby's brief time on earth served some higher purpose that you can't see without looking closely.
posted by Acromion at 10:31 AM on September 6, 2009 [25 favorites]

> According to this, a very small number of Trisomy 13 survive into teenage years or even adulthood. Are those people not "viable"?

I think you need to remember that any syndrome or illness can take different courses and have different levels of severity. Not everyone who has cancer dies a month after they are diagnosed, but some do. It seems from the piece like the prognosis was fairly clear from the start, and that it wasn't looking good.
posted by bjrn at 10:33 AM on September 6, 2009

Meanwhile instead of making this thread yet another moratorium on abortion, can we not focus on Thomas and the love showered on him during his short life? THAT is the topic of the post.

Bah, the topic of the post is a couple who decided to give birth to a child that they knew had trisomy 13. People can have whatever reactions to the couple they feel like.
posted by 23skidoo at 10:35 AM on September 6, 2009

"Notoriety" is a loaded word, but the article is very clear that they did deliberately choose to enter the public eye and have every aspect of this thing documented - this is not an "insinuation", but cold fact.

I believe that's a regrettable choice, and I have every bit as much right to say that as they do to expose the story to the world in the first place.

It's a good question -- why do it? What noble motivation explains why you would want to let the world in on your personal tragedy? It's not an educational story; there's nothing to learn from it, other than sometimes babies get sick and die and their parents love them a lot. Most of us know that. I'm not trying to be that cynical here, since I'm sure the way this couple felt about their child was very genuine. I'm sure they had the child for the reasons they stated. But why make it news? I can see why the pro-choice movement would eat this story with a spoon, how it could be total grief-porn for the Lifetime Channel, etc., but the only answers I can come up with re: why the parents would let the media in like this give me pause. If they write a book and get paid, good on them, I suppose -- they've been through a lot, whether you agree with their decision to have the baby or not -- but it still feels gross, unless maybe the profits go to a pediatrics center or something.
posted by kittens for breakfast at 10:37 AM on September 6, 2009 [2 favorites]

What is the point in bringing to term a baby that will die shortly thereafter, suffer, and cause intense pain and suffering in those around? This does not serve any grand purpose.

Your life will have a lot of high and interesting points that the life of the child under discussion won't. But by most measures, your life will also be short, you will suffer, you will cause pain and suffering to those around you, and your life may not serve any grand purpose. My life is the same, and it's still pretty valuable to me for all its problems, as I suspect yours is to you.
posted by namespan at 10:42 AM on September 6, 2009 [1 favorite]

For those of you who think giving birth to this baby and allowing nature to take its course was cruel?

I don't think this is a fair way to describe it. The child was anesthetized and medically treated. This was not "nature taking it's course," but a series of extraordinary life-saving and pain-relieving efforts. Your language suggests there was something natural about this; there wasn't. If we were to let nature take its course, the child would probably have died much sooner, and certainly would have been in unendurable agony until death came.
posted by Astro Zombie at 10:42 AM on September 6, 2009 [7 favorites]

I can see why the pro-choice movement would eat this story with a spoon

Um...that would be pro-LIFE. I think the pro-choice movement might well dig in, too, but for different reasons.
posted by kittens for breakfast at 10:47 AM on September 6, 2009

Do you not think it would be kinda painful to either be burnt in saline or cut up or however it is one terminates later term pregnancies?

Yeah, and they like to make sure that procedure lasts 5 days. Just to show respect and demonstrate how bloody worthy that life was.
posted by Hildegarde at 10:54 AM on September 6, 2009 [2 favorites]

It is a stubborn insistence that all human life, no matter how brief, how deformed, is worth something.

This is a straw man argument. No one here - no one at all - argued that any human life is worthless - or even that a fetus is worthless, something which is not in fact yet a human.

The question is how best to honour that life - and sometimes a life might be honoured best by ending it, something that almost every pet owner comes to understand sooner or later, for example. I personally think that beating out that last possible dregs of that life in public is the less honourable solution.
posted by lupus_yonderboy at 11:05 AM on September 6, 2009 [6 favorites]

(I thought "eking" and wrote "beating" for some reason...)
posted by lupus_yonderboy at 11:06 AM on September 6, 2009

I think what bugs me most about this isn't the parents' decision; people will make screwy decisions when they are in emotional pain, and it's better for them to have had the choice (even if I think they fucked it up) than for some external agency to force them. It's much too often the case that due to interference by insurance vultures or self-appointed moral arbiters people do not have this choice, and that's bad.

But the church and community members, the newspaper, and the TV station all had a hand in it too. And it was just as much not their decision as it isn't mine. Perhaps, with a few days to think about it and some rational advice, they would have done something saner, but an entire community coalesced around them to feed off of their pain. Once that ball was rolling I'm sure reconsideration was unthinkable. And I'm equally sure that all those idiots would be just as giddily euphoric had Ms. Laux died in childbirth -- a fate much more likely from any live birth than for any method of pregnancy termination.
posted by localroger at 11:06 AM on September 6, 2009

lupus_yonderboy: I thought "eking" and wrote "beating" for some reason...

I thought "beating" was quite apt.
posted by localroger at 11:07 AM on September 6, 2009

My statement about having different ethical frameworks was only to remind that at no point in time has Utilitarianism been voted THE standard. You may be utilitarian, you may think of the alleviation of pain to be the highest good, but there was plenty of "I cannot understand at all what possessed these people to make this choice." Not, "I understand, though I strongly disagree with them. I think they made an immoral choice," but flat-out total incomprehension of the factors in the couples choice. Maybe they're religious, maybe they believe that life—however short—can have a value in and of itself, who knows? I have no idea what I would do in a similar situation so sure as hell am gonna give a certain amount of latitude for their choice. I don't have to agree with it, but I certainly understand it.
posted by Lord Chancellor at 11:08 AM on September 6, 2009 [1 favorite]

My thoughts, distilled into point form:
1. This video is a snuff film.
2. Calling this a miracle is like calling autoerotic asphyxiation a miracle.
posted by "Elbows" O'Donoghue at 11:14 AM on September 6, 2009 [2 favorites]

St. Alia of the Bunnies: Meanwhile instead of making this thread yet another moratorium on abortion, can we not focus on Thomas and the love showered on him during his short life

Between the likely profound brain damage, being constantly doped up on painkillers, and being horribly unhealthy, do you think there's any chance he even perceived any of it? I suspect the main thing he perceived was a primal sensation of there being something horribly wrong with his body, and that he was dying.
posted by Mitrovarr at 11:19 AM on September 6, 2009

It's a two-sided coin. Some people focus on the idea that all life is precious and has value. The flip side is avoiding death at all costs. The denial and fear of death is unbalanced. Death is every bit as common as birth. We live in a place and time where it has come to seem that every baby is expected to live to a ripe old age. In most parts of the world and throughout all of past history that is not the case. It's NEVER a question of if someone will die but only of when. So in a case like this baby you are forced to consider quality of life because quantity was never on the cards.
posted by binturong at 11:19 AM on September 6, 2009

I accidentally favourited a comment when I meant to flag it - and I can't find how to remove the favourite -aaargh!
posted by Flitcraft at 11:27 AM on September 6, 2009

Damn, Flitcraft. I guess you're stuck with that favorite FOREVER.
posted by kittens for breakfast at 11:28 AM on September 6, 2009 [1 favorite]

...Sigh. Hit the minus sign...
posted by kittens for breakfast at 11:31 AM on September 6, 2009

When I saw that poor baby, I could see myself, and all of humanity. I could see our struggle, from birth to death. And on a cosmic scale, what is the difference between a life that lasts 12 hours and one that lasts 80 years? Perhaps that baby's brief time on earth served some higher purpose that you can't see without looking closely.


I think I see your problem here. You're viewing this baby's birth in eschatological terms: as if there is some Great Purpose behind this kind of senseless tragedy. You even make the baby out to be a kind of Christ-figure: "I see all humanity in his eyes".

It's interesting to me that so-called non-religious objections to abortion are still consistently couched in Christian language and Christian imagery. While I have no reason to doubt that you "aren't terribly religious" but I might also suggest that you rethink some of your positions in light of the God of Abraham's apparent non-existence.
posted by Tyrant King Porn Dragon at 11:36 AM on September 6, 2009 [3 favorites]

(I myself am opposed to artificially extending life)

PLUS

they were simply allowing him to live his natural lifespan, albeit a short one, with only enough medical intervention to keep him comfortable.

=

Incoherence.
posted by joe lisboa at 11:38 AM on September 6, 2009 [2 favorites]

as if deciding to conceive and not abort were the default position, whereas having an abortion would be "intervening" in the process

This, precisely. As someone who finds abortion ethically abhorrent (again, for entirely non-religious, non-Christian reasons), this is precisely the default position. It is not that an abortion would be "intervening," but rather that it is a gross overreaching of my rights as a human being, to end the life of another.

Hm. OK, we're not going to agree here. It seems to me that you want to believe that your decision to have a child, when you could have chosen not to, is somehow not an active choice, in which you chose to assert your ability to make big decisions about how many lives there should be on the planet. I think it's an abrogation of your responsibilities as a human being to tell yourself that this was somehow out of your hands.
posted by game warden to the events rhino at 11:40 AM on September 6, 2009 [1 favorite]

I think that the story was brilliantly played by the Dallas News, because it manages to reinforce both pro-choice and anti-choice views equally, depending on the mindset of the viewer. I will not judge these people for the decision that they made. This is exactly the point of reproductive rights in this country. And as a citizen, taxpayer, human being, etc., it is not my place to judge whether their reproductive choice was ethical or not. That is the decision of the couple and the woman's doctor.

I do not concern myself with the medical costs associated with their choice - again, even if the US had a public option it would never be my place as a citizen and layperson to judge whether their choice should be covered or not. I would hope a couple whose costs were presumably covered by their insurance company would not then make motions to deny treatment or coverage to women seeking different reproductive health options than theirs, in similar circumstances.

As far as for the story being heartbreaking, tragic or moving, I find myself feeling mostly manipulated. I understand the drive to hold and love an infant is huge, especially when you are expecting. At the same time, I feel like the way the story was framed, the notes it attempts to hit feel a little forced. Yes, it is sad for a parent to bury their child, and it is certainly a very difficult choice to make. But as the mother notes herself - in her mind, she didn't make a choice. And I feel pretty comfortable inferring that she welcomed the documentation of the planned, short life of her child specifically to glorify her non-choice and her desire to extend it to all women.
posted by SassHat at 11:42 AM on September 6, 2009 [3 favorites]

It's a good question -- why do it? What noble motivation explains why you would want to let the world in on your personal tragedy? It's not an educational story; there's nothing to learn from it, other than sometimes babies get sick and die and their parents love them a lot.

As I see it, the point of the filming and sharing was to share their process and their grief, primarily for potential parents facing such situations of their own. "What would it be like if we did carry this child to term? What are we facing emotionally, financially, socially? What might the experience be like for the child? What does my conscience tell me about this?" Not grief-porn, not some sick need for media attention, not validation or invalidation or judgement of their choice, but education of what the experience looked like for one couple dealing with this situation.
posted by notashroom at 11:43 AM on September 6, 2009 [3 favorites]

This conversation reminds me of this article the New York Times that states (on page 4):

The baby's head and brain grows as much as it can in the womb, and then it continues developing long after birth. Human babies are thus believed to be secondarily altricial: our early hominid ancestors probably gave birth to more precocial young, but an extended period of altricial helplessness was superimposed over that to permit a burst of post-utero brain growth. Newborn humans are essentially fetuses for another nine months after birth.

Our process toward conscious being-ness, sometimes understood as "becoming human", really shouldn't be a question of conception, quickening or birth; we have more points to our fetal growth even than those. Thomas was never going to survive to be more than a fetus.

This doesn't mean that he didn't have value. Extending life by a few days isn't a demonstration of an understanding of its value.

I have strong feelings about this right now because I had to fight my vet last week to put my cat down. He had congestive heart failure. He might have survived a few more days, maybe a couple of weeks with medical intervention, but they would have not have been good days or weeks. He had already lost all interest in doing things he used to love, had stopped eating, drinking, and pooping, and only wanted to curl up and sleep. I fought to put him down because he had incredible value to me, and I didn't want him to suffer just so I could cuddle him and say goodbye. It wouldn't have been fair. He didn't need to wake up in terror with a catheter in him and tubes down his throat, or die of a heart attack or by drowning in his own lungs. Is that respectful? I wish we had the sense to be more compassionate to humans as well.

And yes: my parents have clearly asked for the same treatment for themselves, but we don't permit anyone to terminate humans that way when the time comes. Prolonging life isn't always the respectful answer. I hope at some point we as a culture come to better terms with death and allow our loved ones some peace and dignity.
posted by Hildegarde at 11:45 AM on September 6, 2009 [12 favorites]

Meanwhile instead of making this thread yet another moratorium on abortion, can we not focus on Thomas and the love showered on him during his short life? THAT is the topic of the post.

I've got to assume it's not deliberate, given the thoughtfulness of your other comments here, but this is a pretty unpleasant effort to stifle discussion of the issues raised by this post by suggesting that the capacity of these people for enormous love somehow eliminates the possibility that they made an ultimately very bad decision. That's really just a slightly intellectualized version of the "hey! fetuses have fingernails!" non-argument of the most intolerant pro-lifers.
posted by game warden to the events rhino at 11:45 AM on September 6, 2009 [2 favorites]

It seems there are two discussions -- the birth of the infant and the video of the infant. I find the second far more objectionable (and even wonder if it may have influenced the first decision ... move over octomom?)

We inhabit a world that sees (prisoners') bodies preserved and on display; personal tragedies dissected on reality television; and bloody warfare converted to gaming. This video is just more of the same kind of "art".

I expect to be spammed with maudlin emails about this "deeply inspirational story of courage" over the next few days. I need an answer bot.
posted by Surfurrus at 11:51 AM on September 6, 2009

Make the decision, whatever it may be, and keep it to yourselves and no one but your immediate family.

I find this an interesting idea. In another thread someone quoted a really high statistic of the number of fetus with down's syndrome that are aborted (something like 90% I think?). Which means I probably know someone that has aborted in those circumstance yet no one I know admits to it. I know several people with children with down syndrome (diagnosed in utero) and a lot of women who have had abortions but no one I know admits they had a viable, yet imperfect, fetus and chose to abort it. I wonder if the shame inherent in the idea of keeping such abortions secret as suggested above is what makes some people think they are facing an uncommon situation and they choose to continue their pregnancy because they feel alone and marginalised in their decision.

The statement "whatever it may be" also implies that parents of children with defects (that they have decided to carry to term) should hide the fact of the "deformed" children from the rest of society. That is seriously fucked up if that is indeed what you meant.

Death and sadness has always been a part of birth; how awful the whole situation must have been for the parents and those close to them.
posted by saucysault at 11:58 AM on September 6, 2009 [2 favorites]

I wonder if the shame inherent in the idea of keeping such abortions secret as suggested above is what makes some people think they are facing an uncommon situation...

I think you've nailed it there.

A step further: it seems to me that a lot of the anti-abortion movement seems to really be about keeping things in secret backrooms and alleys, where they can be easily-ignored like other "poor people" problems. Safe and legal would also mean public and visible, after all.

The wealthy or well-connected will always have their "accidents" that society will accept, as they have for hundreds of years. Being so pious and moral, they won't talk about it, either.
posted by rokusan at 12:08 PM on September 6, 2009 [4 favorites]

kldickson: "Lord Chancellor, my tack is one entirely of how compassionate it is to the kid whose life consisted entirely of five probably pain-filled days just because his parents were all 'HURF DURF JUST AS LONG AS HE'S ALIVE AMIRITE'."

My goodness. I've had a tiny, very tiny, insight into what these parents went through, as my son was tentatively diagnosed with trisomy 13, 18 when I was 20 weeks pregnant with him. I can assure you that my thoughts in the two weeks while we waited for further testing were not "HURF DURF."
posted by The corpse in the library at 12:10 PM on September 6, 2009 [13 favorites]

In a situation like this, there is no way to avoid pain. They chose to spend the brief time they had with him together, holding him, loving him.

Except that they didn't make their choice because it would be best for their son, they made their choice because they thought it would be best for them. It was an essentially selfish act, not a selfless one.

Because we have the right to make a certain choice does not necessarily make it the right choice.
posted by Justinian at 12:32 PM on September 6, 2009 [1 favorite]

have we "lost her"? Do we end her life? I'm impressed that you have the emotional and mental fortitude to decide with such dispassion when it is time to end a life. I do not.

Why dispassion? It seems to me that these decisions must be made with as much passion and love as possible.

But yeah, apparently you do lack the emotional and mental fortitude, not only to make such a decision but to even take seriously the possibility of your responsibility to undertake it. Fine, that's one way to deal with these things.

Maybe I read your subtext wrong, but it seems like you're saying that throwing up your hands and pretending like you don't have any responsibility and as long as you sit on your hands you can tell yourself your innocent is not actually a humanely and morally regrettable position.
posted by Salamandrous at 12:41 PM on September 6, 2009 [1 favorite]

oops, tell yourself "you're" innocent.
posted by Salamandrous at 12:42 PM on September 6, 2009

A very moving film, and very conflicting. I think that this couple thought more of themselves than their son in deciding to take the pregnancy to term. But I lack the assuredness in my own ability to deal with such a situation to condemn them for it.
posted by Sova at 12:56 PM on September 6, 2009

And the hatred against people with disabilities by MeFi commenters continues.
posted by dw at 1:00 PM on September 6, 2009 [3 favorites]

Maybe I read your subtext wrong, but it seems like you're saying that throwing up your hands and pretending like you don't have any responsibility and as long as you sit on your hands you can tell yourself your innocent is not actually a humanely and morally regrettable position.

Yeah, you totally misread it. What I was saying was, simply, I'm very grateful that at this point in my life, I do not have to make such a decision. I may have to someday, and I will. But I'm grateful for healthy children and a healthy wife, and my heart hurts for this couple. That's all.
posted by jbickers at 1:25 PM on September 6, 2009

It's two tragedies in one event.

One is the child tragedy, as unmerciful chances of genetics dictated that he could not survive in the current enviroment, but as "nature" can't be personified into an human being, at least there was no cruelty.

But I think the parents were selfish , even if they probably honestly tought they were not and maybe, on the contrary, they were giving their son a slim chance to live, but what kind of life ?

roomthreeseventeen cites an article in this link and correctly states that mortality is very high, but some people survive. Well, let's read more shall we :

Median survival age for children with Patau syndrome is 2.5 days, with only one in 20 children surviving longer than 6 months. However, some children survive into their teens and seem to fare better than might be expected based on reports from those who die in the perinatal period.The mortality rate is very high among neonates. Children who survive the neonatal period continue to express developmental delays and exhibit a declining developmental quotient over time. This decline does not result from loss of developmental milestones but instead reflects a worsening developmental lag compared with other children. A report on a group of 21 individuals with Patau syndrome (3 mosaic and 18 nonmosaic) who survived past age 5 years showed the oldest to be aged 21 years.

further citation from wikipedia on Patau article

Treatment of Patau syndrome focuses on the particular physical problems with which each child is born. Many infants have difficulty surviving the first few days or weeks due to severe neurological problems or complex heart defects. Surgery may be necessary to repair heart defects or cleft lip and cleft palate. Physical, occupational, and speech therapy will help individuals with Patau syndrome reach their full developmental potential.

Thomas' parents probably were a lot more informed than the readers of this thread and possibily decided to took a bet even if, judging from the aformentioned info, the odds were stacked against Thomas.

Possibly they also saw this website, which relays pictures and info about 93 people who survived the median survival expectation. Clearly they are quite lucky and I can't but wish them all the best and maybe figure out how to help them somehow.

BUT

Why should one take these chances? It's not betting on your own life, it's betting on the children future as well. How is not killing a foetues moral and betting on slim chances moral, at stake being your children quality of life ?

It's choosing between one absolute and one uncertainity : death, with no other possible consequence but your suffering and life, with odds stacked against your child, who is more likely to suffer greatly and is more likely to need perpetual assistence for all his/her remaining life.

I can't understand how can these parents sleep knowing that if their children survives them, chances are they will not be necessarily as loved and taken care of as the parents would. Of course they could leave their belongings to other younger parents who have a children in similar conditions, and hope they will take good care of him out of sympathy, but what if that doesn't happen and you can't do shit about that?

Take a T13 child like Amber. I am absolutely glad she is having a rather good time, but is she ?

It’s definitely bitter sweet, she looks like every other 9 year old but physically and mentally she is not there with them. Amber has great family and friend support - presently we are dealing with ADHD, she has every sign of it but the meds have the opposite effect for her.

How much of this is parents' delusion, wishing to see all that is fine with their kids, while belittling or wilfully ignoring other not less real and immanent problems? Surely they are having an hard time, and some of them didn't even know about T13 or discovered only after the child was fully developed and they couldn't, but face the facts and endure them.

At what point does the belief into an omnipotent, helpful god, derail these people into learned helplessness, while maybe believing it's all part of a test and they can't but accept a fate, while they could have prevented it entirely ? Or maybe, given that they shall imho have the option to choose if they want to carry on the pregnancy anyhow, wouldn't it be better to invest energy and knowledge into advancing knowledge, so that maybe in the future T13 can be cured, or parents may be informed about their genetic structure so that may choose, for instance, to adopt as child as opposed to give birth to a child that may live a life of complete misery and suffering?
posted by elpapacito at 1:27 PM on September 6, 2009

The Dalls News video makes it clear - in writing, right there on the screen - that the following happened:

Thomas went home on hospice 53 hours after his birth. Deirdrea and TK were given oxygen and pain medication to help comfort Thomas.

So no matter what you think of their decision, please stop resting your arguments on the pain and suffering of this child.

I am fiercely pro-choice and have written about having had an abortion on MeFi before. But having a termination at 20 weeks is not like having a termination at 12 weeks or under, when the vast majority of abortions in America take place. You are visibly pregnant, to yourself and other people. The image on the monitor isn't a guppy; it looks like a (very small, wrinkly) baby. In most pregnancies, especially 2nd and subsequent pregnancies, fetal movement is established. Infants have survived outside the womb at 21 weeks.

This is a whole different level of decision, and I genuinely do not know if I could make the choice to terminate at that stage. I'm 100% in favour of it being an option for all women who find themselves in the position this couple found themselves in, but like them I'm pretty sure I could not make that choice.

I'm certainly not going to judge this woman for wanting to hold, nurse and cradle a much-wanted child inside a supportive circle of family and friends. And I have massive, massive admiration for the similarly non-judgemental advice they gave to the Tennessee couple in the same circumstance.

But regardless of how I feel about it, part of being pro-choice is making room for the full range of choices inside the law. That means swallowing your distaste for people who make choices you do not like, including women who have more children than they can pay for, who use abortion as birth control, who abort based on gender or deficit, or who do not abort when faced with catastrophic or terminal defects.

It's called Pro-Choice, not Pro-Choices-I-Myself-Would-Make.
posted by DarlingBri at 1:31 PM on September 6, 2009 [48 favorites]

>It is a stubborn insistence that all human life, no matter how brief, how deformed, is worth something.

This is a straw man argument. No one here - no one at all - argued that any human life is worthless - or even that a fetus is worthless, something which is not in fact yet a human.

It's also a Glittering Generality argument. I only discovered this term a few months ago, and was surprised to see it apparently originated by Lincoln 150 years ago. "Glittering Generality" is so much more polite than "bullshit", but the general import is the same, and I think we'd be a lot better off if we start calling everyone on this basic substitution of good-sounding verbiage for actual analysis and fact-based discussion.
posted by Palamedes at 2:11 PM on September 6, 2009 [3 favorites]

Thanks for clarifying that for me, jbickers.
posted by Salamandrous at 2:27 PM on September 6, 2009

But regardless of how I feel about it, part of being pro-choice is making room for the full range of choices inside the law. That means swallowing your distaste for people who make choices you do not like, including women who have more children than they can pay for, who use abortion as birth control, who abort based on gender or deficit, or who do not abort when faced with catastrophic or terminal defects.

It's called Pro-Choice, not Pro-Choices-I-Myself-Would-Make.

Unfortunately, on Mefi, many members seem to hold a unique pro-choice position which is roughly defined as "Pro-Choice-But-Free-To-Be-Judgmental-And-Snarky-About-Other-People's-Highly-Personal-And-Astoundingly-Painful-Reproductive-Choices". Because, clearly, how you imagine you would behave in an imagined hypothetical scenario cannot possibly be different than how you might approach that same situation once it became a real life one.

(Not that it's ridiculous to think completely loving and caring people might very well choose to abort in the same situation, just that the decision is a lot easier to come to when you are looking at it coolly and dispassionately)
posted by The Gooch at 2:31 PM on September 6, 2009 [7 favorites]

This is a whole different level of decision, and I genuinely do not know if I could make the choice to terminate at that stage. I'm 100% in favour of it being an option for all women who find themselves in the position this couple found themselves in, but like them I'm pretty sure I could not make that choice.

While I agree with you, and don't believe in questioning the choices of women when it comes to choosing to terminate a pregnancy, I do think it's notable that, in her linked journal, Deidrea states that she chose to skip screening for birth defect. This was despite the fact that it was recommended by her doctor due to her age, because she would not have aborted regardless of the results--even if it was at the stage when most women would have aborted.
posted by PhoBWanKenobi at 2:42 PM on September 6, 2009

Pro-choice is about the law and what reproductive options should be legally available.

It is not about whether or not you support or approve of the choice, just whether you think they should be allowed to make it.
posted by nooneyouknow at 2:56 PM on September 6, 2009 [2 favorites]

I think that's pretty presumptuous. Who are you to judge the pain of a baby born with trisomy 13 versus being aborted?

Q: Do fetuses feel pain? When do they feel pain?

A: "Evidence regarding the capacity for fetal pain is limited but indicates that fetal perception of pain is unlikely before the third trimester."

Q: In which trimesters do most abortions take place?

A: Roughly nine of every ten of abortions in the United States take place in the first and second trimesters (US Census 2009 Data Book, 2004 survey). Of that set, roughly 70% are performed in the first trimester.

Q: When is trisomy 13 discovered?

A: Screenings for trisomy 13 are performed during the first and second trimesters of the pregnancy. If performed, amniocentesis is done early in the second trimester. This gives the woman carrying the fetus some time to make a decision whether to abort or to carry to term.

Conclusion: From these facts, the claim that a fetus with trisomy 13 would feel pain when it is statistically more likely to be aborted is not substantiated with anything we know currently.
posted by Blazecock Pileon at 3:03 PM on September 6, 2009

I have friends that have been on the flip side of this -- learned early on around week 16 that there was a trisonomy disorder with a bad diagnosis, and they chose to abort. You'd think it'd be easier than what this couple went through but it seems almost as bad. The happiness of being pregnant and all the expectations for the child go out the window when the diagnosis comes up. You're not totally sure until about week 18 and you only have a couple weeks to abort before it's too late term for most doctors. It's the worst decision I imagine anyone ever has to make and the only thing that seems worse is the short life of machines and surgeries a child with this disorder is set to live which also will lead to a similarly horrible choice of when it is more humane to throw in the towel than keep fighting.

The odds are insanely rare for these disorders, but it's tough on everyone, those that carry and those that end it early. There are no winners in these random genetic mutation diagnoses.
posted by mathowie at 3:13 PM on September 6, 2009 [1 favorite]

I am completely in favour of this woman's right to choose, and in fact would say that her choice should be as private as she wishes to keep it - which in this case is not at all.

Given that she's put the whole thing so in front of the public eye and presents it as such a good thing, I feel criticism is perfectly reasonable. I'm frankly much more appalled by the ghoulishness of the whole "you are there" thing than her decision to continue the pregnancy, which is certainly within the range of reasonable choices in this case.
posted by lupus_yonderboy at 3:15 PM on September 6, 2009

There are no winners in these random genetic mutation diagnoses.

If you believe in the theory of evolution, we've overall won out because of the incremental benefits accrued from random genetic mutations that turned out to be beneficial, so these disorders are the necessary flipside of the process that created humanity's splendid immune system, decent brain, hands, and other useful things.

tl;dr: without random genetic mutation we'd still be slime-molds so the rest of us are in fact the winners...
posted by lupus_yonderboy at 3:19 PM on September 6, 2009 [2 favorites]

It is impossible to have publicity without judgment. Even if you approved of what these people have done, you are still judging them, it is just that the conclusion of your judgment is positive. Anything that we come to know about and form an opinion on we necessarily judge. That's what "judgment" means.

I agree with Justinian; these people seem to have only considered what they wanted, regardless of the consequences to their child, to the hospital, and to those other people who, due to this waste of scarce medical resources, will suffer. They may have done so out of a sincere sense of obligation, but this sense of obligation did not arise in a vacuum.
posted by aeschenkarnos at 3:21 PM on September 6, 2009

It is not about whether or not you support or approve of the choice, just whether you think they should be allowed to make it.

I agree with you 100%. Anti-choice supporters may not realize it but this actually vindicates what pro-choice folks have been saying all along.

If, however, the choice to carry to term extends to publicizing the decision, then there is some room introduced to examine and question the motives of the parties involved.

Was this done to make a public statement in opposition to privacy laws like Roe v. Wade, for example?

It's not clear for what reason this private matter is being shared with the public. I'd like to hear more from the newspaper editors about why they shared this and what exactly they hoped to accomplish, if it is anything more substantial than sensationalism.
posted by Blazecock Pileon at 3:25 PM on September 6, 2009

"waste of medical resources"....those are chilling words, aren't they?
posted by St. Alia of the Bunnies at 3:27 PM on September 6, 2009 [1 favorite]

"waste of medical resources"....those are chilling words, aren't they?

Not really, no.
posted by Hildegarde at 3:29 PM on September 6, 2009 [10 favorites]

"waste of medical resources"....those are chilling words, aren't they?

No more so than "death panels" or any other lie put into manipulative scare quotes.
posted by Blazecock Pileon at 3:41 PM on September 6, 2009 [1 favorite]

The enlightened liberal desperately believes he must eradicate all pain and suffering from a world that is genetically disposed to pain and suffering. The enlightened liberal apparently believes the best way to accomplish this is by demanding "choice" while simultaneously dictating that "choice". Can you say "wing nut"?
posted by Hovercraft Eel at 3:53 PM on September 6, 2009

The enlightened liberal does...

Please don't fall into wide generalization that can't represent reality. Not everyone who wouldn't abort also wants to impose that choice on others, as well.
posted by elpapacito at 4:06 PM on September 6, 2009

DarlingBri and The Gooch, please. They filmed the death of their child and broadcast it to millions of potential viewers. I am all about the right to free speech, but that doesn't mean that if someone publishes offensive material I can't say it's offensive.

No one is saying they should not have had the right to choose. No one is saying that they should have been forced to abort. If you really want to get on someone's case for being judgmental, how about all the people in this thread who are using this tragedy to promote their own agenda of "abortion is wrong because it doesn't fall in line with my own personal belief system"?
posted by ellehumour at 4:10 PM on September 6, 2009

Frankly I am shocked and stunned that anyone would believe that bringing this baby to term and caring lovingly for it during this short life would be anythng but an awesome thing....twenty or thirty years ago, if some of you had expressed that opinion that would have been seen as incredibly shocking.

People used to say we were on a slippery slope when abortion was made legal-people used to scoff at that.

At this rate in twenty years I wonder if I am going to have to justify why I shouldn't become soylent green, honestly.
posted by St. Alia of the Bunnies at 4:22 PM on September 6, 2009 [3 favorites]

bringing this baby to term and caring lovingly for it during this short life would be anything but an awesome thing

There is nothing 'awesome' about this story in the slightest.
posted by graventy at 4:32 PM on September 6, 2009

If you believe in the theory of evolution

When I said "There are no winners in these random genetic mutation diagnoses" I meant "THESE random genetic..." meaning THIS instance. THIS specific kind of problem, of course I'm not railing against all genetic mutations. I can't believe I have to explain this.

The couple that takes it to term and gives birth and watches it die is no more virtuous than the couple that chooses to abort earlier. There are no winners.
posted by mathowie at 4:38 PM on September 6, 2009 [1 favorite]

St. Alia of the Bunnies: At this rate in twenty years I wonder if I am going to have to justify why I shouldn't become soylent green, honestly.

And once again you try to deflect the point of the debate and paint your opponents as ghouls.

You ignore that your opponents are mostly arguing that aborting the fetus would have been the best thing for it, saving it from a couple of days of hopeless and pointless suffering. Even the 'waste of resources' people have a good point in that the medical resources used on this hopeless case could have been used to save someone else who actually had a chance at survival.

Do you think we should institute some sort of universal health care that covers this sort of hopeless case? This case was short and pretty cheap so it may not be a good example - you might substitute a more expensive case, like the one where the parent kept the anencephalic baby alive for a while, instead. That would be pretty expensive, but maybe you believe in it - although it would certainly put you at severe odds with most of the pro-life politicians. Or are you simply willing to accept that while these parents were spending money and the time of medical professionals on this hopeless case, a poor child somewhere was quietly dying 'off-camera' that could have been saved given the proper resources? Hell, in this case, the camera is even literal.
posted by Mitrovarr at 4:42 PM on September 6, 2009

St. Alia of the Bunnies, if you had a 19 year old cat or a 15 year old dog and your vet gave you a cancer diagnosis for them and the advanced rate of cancerous growth was too much to operate on, and you were looking at a life of pain and suffering ahead for your pet, at what point would you have the animal put down for the sake of being humane?

I bet if you asked 100 people, you'd get 100 different answers. Of course, people and animals are not the same, but the same dynamics come into play when you are thinking of a loved one and facing these terrible questions.

It sounds like you definitely would keep on fighting no matter what the expense or sacrifice you'd have to make for your pet, while others here would put the animal out of its misery earlier. It also sounds like you think it abhorrent that anyone would even consider trying to prevent a life of misery from happening to a beloved one.

To each his own, but at least we live in a nation free enough to accommodate both viewpoints.
posted by mathowie at 4:43 PM on September 6, 2009 [1 favorite]

But regardless of how I feel about it, part of being pro-choice is making room for the full range of choices inside the law. (...) It's called Pro-Choice, not Pro-Choices-I-Myself-Would-Make.

Being pro-choice is about it being legal to make whatever decision the parents in question choose for themselves. It has nothing to do with throwing up our hands and saying that all choices are equal under all circumstances. You're trying to distort "pro-choice" into "all choices are great!".

It was completely legal for a guy to carry a semi-automatic AR-15 (civilian variant of the M-16 assault rifle) to an anti-Obama rally just outside where Obama was speaking. Since it was legal, are we obligated to stand back and say that it was part of the full range of choices inside the law with regard to carrying firearms? I assume you have no criticisms of carrying such a weapon in such a manner?

I'm definitely pro-choice but that doesn't mean I have to shut my reason off at the door.
posted by Justinian at 4:56 PM on September 6, 2009 [1 favorite]

I don't know how I feel about this. All I know is that after watching this I picked up my baby and hugged him tight, and thanked the universe that he is healthy. I have seen this happen with a friend who lost her baby shortly after he was born. She had a short video of her holding the boy, knowing he would die but trying to love him as long as she could. I don't know if she was aware of the issues before it happened or if it was a horrible shock at the end. I think if I had to go through such a decision myself I would have liked to know that others had done it before, and may have appreciated seeing how they handled it. But I was lucky, I didn't have to do that. I don't think anyone could understand their decisions without having been there. I can't necessarily understand the choice this couple made, but I definitely think the rest of us have no business at all judging them for it.
posted by caution live frogs at 5:06 PM on September 6, 2009 [1 favorite]

I'm not being flip or snarky, I really just don't understand why the parents would have chosen to do this story, and to follow it through.
posted by 8dot3 at 11:26 AM on September 6

I feel pretty comfortable inferring that she welcomed the documentation of the planned, short life of her child specifically to glorify her non-choice and her desire to extend it to all women.
posted by SassHat at 1:42 PM on September 6

It's not clear for what reason this private matter is being shared with the public. I'd like to hear more from the newspaper editors about why they shared this and what exactly they hoped to accomplish, if it is anything more substantial than sensationalism.
posted by Blazecock Pileon at 5:25 PM on September 6

And several other similar sentiments:

This is from one of the articles availablelight linked to early in the article:

The couple's desire is to help other families facing infant loss and encourage wider support for perinatal and pediatric hospice services in North Texas.

Likewise, from a later editorial linked in the same comment noted above:

Though many readers have drawn a pro-life message from Thomas' tale, the Lauxes do not wish to be seen as an anti-abortion poster couple.

I have to wonder how many of those commenting here have ever faced the reality of having an infant facing a substantial, immediate risk of death; of watching their infant suffering from evident, serious pain and distress; of having an infant which could not survive without massive medical intervention, which cannot eat or breath without assistance. I can't claim more than an inkling of this couple's choices, since in my own case our child had a very reasonable chance of pulling through his medical crisis and proceeding to a normal infancy, and he did in fact survive and thrive. But I must say that I can't find it in myself to judge these parents' decision any more than I could the decision of parents who elected to terminate a similar pregnancy. The need that some of you have to judge them speaks volumes.
posted by nanojath at 5:07 PM on September 6, 2009 [6 favorites]

ellehumour: DarlingBri and The Gooch, please. They filmed the death of their child and broadcast it to millions of potential viewers.

First of all, I have no idea what you're "pleasing" here - all I said was that the right to choose means respecting the right of people to make choices you don't like. I'm not sure what's objectionable about that, but I'm sure MetaFilter will educate me.

Second of all, while from your point of view they filmed the death of their child, I'm pretty sure that's not how they see it. I imagine that knowing they had only a very short time with this child, they chose to document as much as possible of his growth, his birth, and his life - which included his death, as it does for all of us.

And while many here see the choice to allow the Dallas News to publish that as either octo-mom-ish or just plain morbid, I don't. I don't think it's very different than what thousands of other parents do. The internet is a practically a shrine to dead babies, still births and miscarriages complete with scans, photos, video and handprints. There is a huge desire with this kind of loss to say "My child was here. He existed. Look at him; he was beautiful to us. He was loved. His life made a difference even though he is gone."

But honestly, I don't think their choice to allow this to be documented is really as relevant as some folks are making it out to be. I'm in no doubt that if this story had merely been reported, instead of documented, the thread would be just as judgemental, just as intolerant and just as lacking in empathy as this one is.

What I do wonder, though, is if these people declared themselves to be atheists or agnostics, if it would be quite as hostile. Because maybe it's just me but there's an undercurrent of LOLXtians backlash in this discussion that's cutting a pretty wide swathe here. I'm not a Christian and I have no faith but I do find that troubling.
posted by DarlingBri at 5:10 PM on September 6, 2009 [10 favorites]

I've taken a hamster to the vet that needed to be put down. I cried for three days but I did it.

I don't want to cause pain to someone in that situation who made a different choice (such as mathowie's friend) but I cannot see anything whatsoever equivalent in how we treat animals versus humans. Those of us who have the luxury of discussing this from the point of view of unnvolved bystander-and I understand I am in this category-are approaching this from two quite divergent philosophical points of view. I truly believe that if we truly believe that terminatng this pregnancy is the right thing to do then we are logically bound to believe that it is okay and even praiseworthy to terminate the lives of those in nursing homes and those suffering from various and sundry conditions at all age levels.

I know a young man in a wheelchair-he's a teen-who was diagnosed in utero with spina bifida. Should he live? He seems to enjoy life just fine, honestly. But he did require a lot of operations while a baby, and I am sure he consumed quite a lot of medical resources and underwent pain. It frightens me that some of you seem oblivious to even the idea this could be a very very slippery philosophical slope. In my case it is my belief in God that colors my views but I don't think one has to be a theist to consider that going down this particular philosophical road has many many ramifications. I joke about soylent green, but I'm fifty years old, in twenty years I will be seventy, and I wonder just what the social consensus on matters of life and death will be at that point. Those of us who are at least this old have seen views on these matters change drastically, so it's not an idle fantasy.
posted by St. Alia of the Bunnies at 5:19 PM on September 6, 2009 [3 favorites]

The odds are insanely rare for these disorders, but it's tough on everyone, those that carry and those that end it early. There are no winners in these random genetic mutation diagnoses.

Exactly. I'll take the chance to reiterate that Darwin theory of evolution doesn't define "winner or loser" species or "superior vs inferior" species or races, actually he tought it "absurd to talk of one animal being higher than another".

Of course his tought has been sometimes misunderstood, but sometimes was also deliberatedly misrepresented as validating theories such as eugenic theories,
which would probably have advocated the "pious" suppression of Thomas, even after being born, as he was going to "contaminate the bloodline" had he reached the age of reproduction and was unable to fend for himself, so why "waste resources" on him?

Clearly such callous nonsense belongs to these holding the delusion of a superior or elected race and with no understanding that the selection of fitness to enviroment isn't an human or divine invention, but is a process by which we became able to survive on earth and eventually become intelligent enough to increase our chance of survival by partially taming some of the forces of nature.

Hopefully we will become able not to succumb to indesiderable random genetic mutations without self destroying ourselves in the process, by causing, for instance, abrupt changes in our environment that wouldn't allow enough time for natural adaptation to happen.
posted by elpapacito at 5:19 PM on September 6, 2009

St. Alia of the Bunnies: I know a young man in a wheelchair-he's a teen-who was diagnosed in utero with spina bifida. Should he live?

That doesn't even qualify as a strawman. You made that argument out of something more flimsy than straw. Aerogel? Wet tissue paper?
posted by Mitrovarr at 5:46 PM on September 6, 2009

I'll take the chance to reiterate that Darwin theory of evolution doesn't define "winner or loser" species or "superior vs inferior" species or races,

Thus the title, "The Ascent of Man"?

Without evolution, we would be slimemolds. I personally am happy it worked out this way and I think I won out personally, as did humanity as a whole. All sorts of other species did well too, though YMMV - this is definitely a matter of personal taste ("annoying vertebrates!")

It frightens me that some of you seem oblivious to even the idea this could be a very very slippery philosophical slope.

It baffles the rest of us that you don't see that we are already on this slope and have been since the dawn of time. There are only ever finitely many resources - things are of course somewhat elastic but the fact is that the vast majority of human beings on this green earth do not get adequate medical care and suffer their whole lives as a result.

If you really cared about this sort of thing then you'd be up in arms, trying to make sure that the limited resources we have are efficiently and equitably distributed.

I have to say that the "slippery slope" argument is just wrong every time. Just because I get my nails cut doesn't mean I will ever consent to have my arms chopped off.

Argue against the merits of a specific in the present, not against some amorphous thing that might happen in the future.
posted by lupus_yonderboy at 5:51 PM on September 6, 2009

As the father of three kids (hey, now you can prejudge my position) I simply cannot imagine bringing a child into this world only to have it die. When I showed this post to my wife, she couldn't imagine it either.

We were pretty young when we had our first, and while abortion was on the table, it was something we weren't willing to go through with when the fetus was known to be healthy and viable. But we've always agreed that should there be something terribly wrong, it would certainly be better not to put the child, or ourselves, or our ever-growing family through the unbearable pain of bringing someone into this world suffering, and then lose them again.

I cannot fathom how you rationalise that decision.
posted by Neale at 5:51 PM on September 6, 2009

Well, mitrovarr, I remember when his mom was pregnant with him-you do know a lot of folks terminate those pregnancies? Along with children with Down's and other disorders....and I know I have seen online people argue that it is much better to terminate those pregnancies than to bring to term. If one is arguing that the parents had the duty to terminate the pregnancy of the particular baby we are discussing in this thread, I don't see where their argument would change much at all if any for these other cases.
posted by St. Alia of the Bunnies at 5:51 PM on September 6, 2009

I have to say that the "slippery slope" argument is just wrong every time. Just because I get my nails cut doesn't mean I will ever consent to have my arms chopped off.
Argue against the merits of a specific in the present, not against some amorphous thing that might happen in the future.


Well, the problem with that statement, for those of us who have been around awhile, is we have seen slippery slope in action, and we also know that ideas have consequenses, both for good and for ill. And whether or not you think my position bears merit or not it's still a very good idea to think long and hard before these things.
posted by St. Alia of the Bunnies at 5:58 PM on September 6, 2009

I truly believe that if we truly believe that terminatng this pregnancy is the right thing to do then we are logically bound to believe that it is okay and even praiseworthy to terminate the lives of those in nursing homes and those suffering from various and sundry conditions at all age levels.

My parents have specifically requested that. So yes: it's okay and praiseworthy to terminate the lives of those in nursing homes and those suffering at all age levels if that's what they opt for, because a life of nothing but suffering is not a requirement of being human. Those people in question are responsible for themselves and can make that decision. We're responsible to make that decision for some others who cannot set the wheels in motion themselves. Compassion is an important virtue, is it not?

Our attitude toward death in this culture is really screwy.
posted by Hildegarde at 6:09 PM on September 6, 2009 [2 favorites]

St. Alia, at what point does it become too much of a cost to sustain Thomas? Is it worth $100,000 to bring him to term for five days?? One million dollars? Ten million dollars? One billion dollars?

Outside of all the hand-wringing over whether it is 'your call to make', at some point somebody has to decide such things. And before you say that this leads to a slippery slope, do note that this sort of decision has to be made all the time. At some point, those resources are better spent improving or saving the lives of others. How many people's lives could have been saved or improved with the money spent on Thomas?

Yes, it was their choice to make, and I wouldn't wish for them to be forced into one decision or another by law. However, this does not mean that we should claim that their decision was noble or honorable. Choosing to put this being through a life of pain is just as much a choice as aborting it is.

Lastly, if terminating the pregnancy isn't an option under your moral structure, how is it justified to throw so much resources into keeping it alive beyond what it would have 'naturally' lived?
posted by CrystalDave at 6:15 PM on September 6, 2009 [1 favorite]

we are logically bound to believe that it is okay and even praiseworthy to terminate the lives of those in nursing homes and those suffering from various and sundry conditions at all age levels

I believe that if people in great pain and suffering would like to end their lives voluntarily, they should have the right to do that.
posted by mathowie at 6:25 PM on September 6, 2009 [4 favorites]

Is having an abortion that much more expensive than a regular natural childbirth?

As to the other resources-I assume you mean hospice-that's as much for the family as it is for the dying person, really. I'm assuming in this case that the parents provided most of the care while the other resources supported the parents. I'm thinking those parents needed support no matter what, frankly.

Again, let me repeat, I'm not talking about heroic measures...if these people had wanted to have a home birth with a midwife with no other measures at all, I have no moral problem with that (other than I would have still preferred for them to have the oxygen and morphine to keep him comfortable.)
I think we can find a sensible medium between over the top life support and looking at a situation such as this in just dollars and cents. The latter is unworthy of us as humans while the former is just as unreasonable in my view.
posted by St. Alia of the Bunnies at 6:29 PM on September 6, 2009

all I said was that the right to choose means respecting the right of people to make choices you don't like.

True, but it sounded like you were saying people who are pro-choice are out of line for disagreeing with their decision. However, respecting people's right to make a choice is orthogonal to respecting the choice itself.

I'm pro-choice. I think a woman should be able to have an abortion (or not) for whatever reason she chooses. But if they, say, abort a female fetus because it's a girl, I won't hesitate to say that's a fucked up reason to have an abortion.

In this case, I support the woman's right to have the baby and I think everyone else posting in this thread does as well. I don't recall seeing anybody saying that she should've been forced to abort the fetus. However, I do think that the choice to carry the pregnancy to term was incredibly selfish and much more to do with them than what was best for the baby.

Disagreeing with someone's decision regarding reproduction does not mean that you are not pro-choice.
posted by nooneyouknow at 6:35 PM on September 6, 2009

The thing I take most from this thread is that any parent's choices are always open to judgement from others and there is just no end of people saying what they definitely would have done in the same situation.
posted by saucysault at 6:46 PM on September 6, 2009

>"Pro-Choice-But-Free-To-Be-Judgmental-And-Snarky-About-Other-People's-Highly-Personal-And-Astoundingly-Painful-Reproductive-Choices"

an ordeal documented, filmed, & released to media -
actions of which the most charitable interpretation is a desire to start dialogs such as this one

yes - pro-choice means exactly that - pro-choice -
but standing by that principle doesn't preclude any discussion of such difficult choices,
in fact, just the opposite, it does more to acknowledge them by providing different avenues through that choice

>"Frankly I am shocked and stunned that anyone would believe that bringing this baby to term and caring lovingly for it during this short life would be anythng but an awesome thing....twenty or thirty years ago, if some of you had expressed that opinion that would have been seen as incredibly shocking."

no you aren't -
but i guess that's the game we have to play here so...
The appeal to the authority of the past is pretty dangerous - and are you sure that this conversation would have been that *shocking* in the day of eugenics? or are those days too far back (Theodore Roosevelt? Winston Churchill? Prescott Bush?) and so beyond your high-water mark of an ethical society?

To be sure, it more shocking that anyone would persist in trivializing what is obviously a heart-wrenching situation under such trite absolutes and then go further and chalk up the very presence of a conversation about such a difficult situation as the obvious product of the slippery-slope resulting from legalized abortion. Really, if you are looking for the lack of a compassionate response to situations such as this, you really don't need to go as far afield as you are trying.
posted by sloe at 6:48 PM on September 6, 2009 [1 favorite]

Justinian: It has nothing to do with throwing up our hands and saying that all choices are equal under all circumstances. You're trying to distort "pro-choice" into "all choices are great!".

Please do not distort what I very clearly said. When I said "That means swallowing your distaste for people who make choices you do not like, including women who have more children than they can pay for, who use abortion as birth control, who abort based on gender or deficit, or who do not abort when faced with catastrophic or terminal defects." that is not "all choices are great!"

I do not think all choices are great. I do not, for example, think terminating based on eye colour or gender preference is a good reason to have an abortion. But I am 100% willing to tolerate the unpalatable and allow individual women to make choices I find personally and morally abhorrent so that the right to choose is safe for all women.
posted by DarlingBri at 6:49 PM on September 6, 2009 [1 favorite]

DarlingBri: the thing I am "oh pleasing" is the "you're not a good pro-choicer if you find a video that features a baby struggling to breathe as it dies being broadcast on the internet to cries of 'IT'S A MIRACLE OMG' disturbing and say so" sentiment. I mean seriously, what?
posted by ellehumour at 6:50 PM on September 6, 2009 [1 favorite]

posted by Neale I simply cannot imagine bringing a child into this world only to have it die.

I hate to be the one to break this to you, but everyone who's brought into this world is eventually going to die.
posted by mattdidthat at 6:51 PM on September 6, 2009 [5 favorites]

That I think you should have a choice about something does not create in me an obligation to approve of or agree with your decision.
posted by Pope Guilty at 6:56 PM on September 6, 2009 [1 favorite]

I think at the heart of the pro choice idea is the acknowledgement that some circumstances in life are too personal and emotionally complex to be reduced to a set of reasoned laws or guidelines set forth by anyone outside the situation.

Its easy to consider the decision these people made with cold rationalization. But unless you've been there, how can you judge them?
posted by freshundz at 6:58 PM on September 6, 2009 [1 favorite]

nooneyouknow: True, but it sounded like you were saying people who are pro-choice are out of line for disagreeing with their decision.

ellehumour: DarlingBri: the thing I am "oh pleasing" is the "you're not a good pro-choicer if you find a video that features a baby struggling to breathe as it dies being broadcast on the internet to cries of 'IT'S A MIRACLE OMG' disturbing and say so" sentiment. I mean seriously, what?

Well in that case, I apologise if I came off as saying you are a bad pro-choice advocate if you do not agree with their decision not to terminate. This whole thing actually has NOTHING to do with being pro-choice for me - regardless of whether me, you, this couple or anyone else is for or against, I simply empathise with the decision they made and the reasoning and emotions I think were behind it.
posted by DarlingBri at 7:05 PM on September 6, 2009 [2 favorites]

freshundz: But unless you've been there, how can you judge them?

If this was the standard in criminal court, nobody would ever be convicted of anything. We judge all the time, as we must in order to get anything useful done. We judge in the knowledge that we will eventually be judged ourselves, and hopefully we strive to avoid doing stupid shit that will cause the people who come after us to judge us harshly.
posted by localroger at 7:09 PM on September 6, 2009

Uh, everyone who dies goes thru periods of not breathing or breathing more slowly-it's a natural part of the dying process. (Referring to natural deaths here, of course.)
posted by St. Alia of the Bunnies at 7:19 PM on September 6, 2009

freshundz: But unless you've been there, how can you judge them?

If this was the standard in criminal court, nobody would ever be convicted of anything

Well I guess you could take these people to court, and charge them with what? Were there actions criminal? Was there criminal intent? I think thats a stretch.

My point is that I think people are underestimating the emotional complextity involved with terminating a pregnancy at full term. Though I would probably make that decision in this case i hardly see it as my place to judge others.
posted by freshundz at 7:20 PM on September 6, 2009

When I was in junior high, my aunt had a baby, her firstborn, with trisomy 18 . Like trisomy 13, trisomy 18 results in very damaged infants with serious problems and short lives. He took a couple of months to die. He had no irises in his eyes. He was (doctors said) deaf. He had a low forehead and weird-looking ears. He did not get much nutrition because his intestines were wrong and because he didn't nurse well. We all kept waiting for him to die because, y'know, the doctors said he would. While we waited, my aunt did all the baby-caregiving activities one would normally do with an infant. She fed him and burped him and rocked him and sang to him and changed him and cuddled him and all like that, knowing for every minute of it that her baby was never ever going to open his eyes, gurgle or coo, roll over, sit up, learn to walk, learn to talk... there were no milestones for him. There was waiting for death.

My aunt did not know this cup was coming to her. It was the early eighties and she was healthy, in her late twenties. There was no reason for her doctors to do all those tests and stuff on her. So, when the kid hit the ground, she was... not expecting trisomy 18. She was devastated. The nice hospital people told her he would die soon and sent her home with her defective baby, to take care of him until he died of his own accord. "Could be a couple of days, could be up to a year. Don't get too attached -- there's nobody home and he's going to die soon anyway."

I'm so thankful that my aunt had the opportunity to become a better person for knowing her son. I know that she cherishes every precious moment of his short, sweet life. Every moment of it made her world richer and more blessed while she took extended leave from her work to stay home and watch her infant die. I'm sure that having to field questions from everyone who knew she was pregnant made that time ever so much fun. How bright and full of hope those precious days must have been for her. And sun shines out of my ass, too.

T.K. and Deidrea Laux went in with their eyes open. My aunt got it as a surprise. I suspect that it's different when you get a choice. If my aunt had been offered a choice, even a second-trimester choice, I know which way she would have chosen. No doubt. Let that cup have passed from her.

Folks of all sorts can go on and on about how beautiful and special and terrific it is to care for a not-particularly-viable infant, how loving and sweet and heartwarming the situation is. Maybe that's what they need/want to believe. Me, I've seen the situation up close and personal, at an impressionable age. I'm not convinced that beautiful/special/terrific/loving/sweet/heartwarming goes anywhere near what it's actually like. From where I stood to watch, it looked a lot more like my aunt was sent home from the hospital to pull a draw knife over her limbs to remove the skin, made to sprinkle enough salt over her raw flesh to turn the surface pinkish white, then set to rubbing and rubbing and rubbing.

(Aunt's marriage fell apart after the baby died. She married a different fellow and had three healthy children, all of whom learned to smile and coo and walk and talk and graduate from college and get real jobs. She's still waiting on grandkids, though.)
posted by which_chick at 7:47 PM on September 6, 2009 [14 favorites]

which_chick: it looked a lot more like my aunt was sent home from the hospital to pull a draw knife over her limbs to remove the skin, made to sprinkle enough salt over her raw flesh to turn the surface pinkish white, then set to rubbing and rubbing and rubbing

. <-- I had a lot of stuff I thought needed to be said here. On reflection, just dot.
posted by localroger at 7:57 PM on September 6, 2009

freshundz, I do not suggest that the Lauxes be convicted of anything in a court with penalties and all that; I suggest that they should be judged as we all are by our peers in every matter of daily life. Here is a person whose word has proven to be untrustworthy; it affects whether a merchant might do business with him. Here is a person whose interpretation of the marriage covenant is looser than the partner's; at a minimum trouble will result. And here is the couple who selfishly chose to carry to term a doomed infant and involved a whole community in their pain. I'm not sure whether they or the community around them is the more evil and stupid, but it's clear that there is lots of evil and stupid to go around here. There are, perhaps fortunately, no laws against this particular form of stupid, but there also damn well aren't any laws against calling it out for what it is.
posted by localroger at 8:06 PM on September 6, 2009 [2 favorites]

St. Alia of the Bunnies: If one is arguing that the parents had the duty to terminate the pregnancy of the particular baby we are discussing in this thread, I don't see where their argument would change much at all if any for these other cases.

Let's see... potentially disabled vs. inevitably doomed within days. It should be immediately obvious why the argument might be different.
posted by Mitrovarr at 8:14 PM on September 6, 2009 [1 favorite]

Mitrovar, suffering is suffering, no? The terminal baby suffers for a short time, the disabled for a lifetime...according to that logic we should have cleaned out a lot of longterm hospitals by now.... I hope you found that idea as offensive as I do. If so, ask yourself why it is offensive.
posted by St. Alia of the Bunnies at 8:41 PM on September 6, 2009

Localroger, I hope and pray you are some callow 18 year old who likes to hang out on the internet and whose favorite pasttime is WOW or something. Because if you are I have hope you will grow out of that opinion and see some nuances in these situations. Because otherwise, I weep for humanity.
posted by St. Alia of the Bunnies at 8:44 PM on September 6, 2009

suffering is suffering, no?

Nope.
posted by 23skidoo at 8:59 PM on September 6, 2009

What fucking nuance? You sya abortion is wrong, period. We say sometimes it's the lesser of two evils. Get off your disingenuous Christ-kick and try to start comprehending reality, your place in it, and your rampant hypocrisy.

I'm fairly certain Jesus' message did not boil down to 'do as I say, not as I do.' You would do well to learn from that. Go feed the hungry and clothe the poor--without any evangelising, that is. That's what he wanted. Not this ridiculous prattle you vomit up from the depths of your bowels every time these subjects come up.
posted by dirtynumbangelboy at 9:07 PM on September 6, 2009 [1 favorite]

We're not exactly discussing abortion here. DNAB, what is your reaction to those here who think it is WRONG of this couple not to have terminated? I'd be interested to know.
posted by St. Alia of the Bunnies at 9:10 PM on September 6, 2009

The Lauxes chose this suffering for themselves. I don't count the suffering of the baby, since it was too undeveloped to have any real awareness, so I don't hold them responsible for that. No doubt they felt it was somehow necessary to them. I'm not sure if I respect them or not...on the one hand there's the Nietzschean "Whatever doesn't kill me makes me stronger." On the other hand, there's the truth that injuries do harm you, even if they don't kill you. I suspect they feel very noble for having borne that suffering...which actually makes them self-absorbed, egotistical.

If their child had trisomy 1 mosaic, then they would have been doing it an injury by allowing it to be born, since it would have had to suffer the effects of the syndrome its whole life, while they indulged their egos by feeling noble for bringing it into the world to suffer.

Yes, life is suffering, but that fact does not justify imposing suffering on others. Just because life is suffering, that doesn't mean I can kick anyone I want in the head. Bringing a severely debilitated child into the world is the moral equivalent of kicking a stranger in the head while he's sleeping, then feeling noble because you pick him up and take him to the hospital, where you pay for his care out of the goodness of your heart.

Kindness in this case would be having an early abortion, and leaving the facilities they used free for others who actually needed them. Instead, they indulged their own egos by tying up various medical services in order to bring this poor child to term.

OK, no, I don't respect them, except in that they aren't trying to impose their choice on other parents in the same position.

I suspect their subsequent children will be the victims of helicoptering to the nth degree...but that might be true even if they hadn't brought the first child to term.
posted by Jimmy Havok at 9:43 PM on September 6, 2009 [4 favorites]

posted by dirtynumbangelboy I'm fairly certain Jesus' message did not boil down to 'do as I say, not as I do.' You would do well to learn from that. Go feed the hungry and clothe the poor--without any evangelising, that is. That's what he wanted. Not this ridiculous prattle you vomit up from the depths of your bowels every time these subjects come up.

I'm fairly certain no one except you brought Jesus into this discussion, and no one except you used Jesus to attack St. Alia of the Bunnies instead of rationally discussing the salient points of the subject.
posted by mattdidthat at 9:50 PM on September 6, 2009 [2 favorites]

Jimmy, you don't have children, do you?

Some of us have. Some of us know very well what it is like to be carrying a living child....it is not a light thing to ask a doctor to kill it. Whether you are prochoice or prolife.
posted by St. Alia of the Bunnies at 9:51 PM on September 6, 2009

Bringing a severely debilitated child into the world is the moral equivalent of kicking a stranger in the head while he's sleeping

Yes, its exactly like that.
Jesus
posted by freshundz at 9:58 PM on September 6, 2009

I think even by Metafilter standards, a decent number of comments in this thread are cruel and incredibly callous. The Lauxes chose this suffering for themselves.? Come on now.
posted by ThePinkSuperhero at 10:02 PM on September 6, 2009 [6 favorites]

Jimmy, you don't have children, do you?

Some of us have. Some of us know very well what it is like to be carrying a living child....it is not a light thing to ask a doctor to kill it. Whether you are prochoice or prolife.

That's not a reasonable response to what he wrote. He can have something to say whether he has children or not. He never said it was easy to terminate a pregnancy. Don't put words in peoples' mouths, please.
posted by zinfandel at 10:30 PM on September 6, 2009

"Saint" Alia wrote: Well, the problem with that statement, for those of us who have been around awhile, is we have seen slippery slope in action, and we also know that ideas have consequenses, both for good and for ill.

You know, there isn't a single person here, not one, who doesn't believe that ideas have consequences. Why do you keep implying that people who disagree with you are moral idiots?

As for the "slippery slope in action" - if you've seen it, I'm sure you wouldn't mind illustrating an actual example, please, where something bad really happened?
posted by lupus_yonderboy at 10:55 PM on September 6, 2009

Morphine for the pain that they could not know. Of course that baby looked calm, it was drugged into submission from the pain that the parents could not deal with. I just feel a sickness looking at that. They held a doll that they made for themselves. I feel shitty to make that judgement, but how could anyone give pain meds to someone that cannot tell what level of pain they feel.

Have you ever loved a junkie? Have you ever held one in your arms? A junkie will submit to your holding them when they are high, but they do not care. They will be held, and it may feel like they love you because they are not running away, or screaming in pain, but they do not care. For all the high sounding arguments anyone wants to make about any of this, the truth is, someone so highly drugged does not feel anything, not pain or love. There is nothing. Whatever Thomas' potentiality was as an individual was lost to morphine and the human condition. We don't become anything until we differentiate from the parent.

What the parents did was for themselves. But really does it matter? That child would have died either way.

I am glad they used drugs to keep that child from feeling pain. But I feel they did that for themselves.
posted by Belle O'Cosity at 11:00 PM on September 6, 2009 [3 favorites]

I think its a little simplistic to cast their actions as essentially selfish. Mothers in particular form tight emotional bonds with their babies at an early stage, bonds that induce care and empathy for the baby.
posted by freshundz at 11:04 PM on September 6, 2009

I think I see your problem here. You're viewing this baby's birth in eschatological terms: as if there is some Great Purpose behind this kind of senseless tragedy. You even make the baby out to be a kind of Christ-figure: "I see all humanity in his eyes".

It's interesting to me that so-called non-religious objections to abortion are still consistently couched in Christian language and Christian imagery. While I have no reason to doubt that you "aren't terribly religious" but I might also suggest that you rethink some of your
positions in light of the God of Abraham's apparent non-existence.


@Porn Dragon:
I don't see anything specifically Christian about my post. Actually, you can find similar imagery in the writings of Nietzsche, a humanist if there ever was one. Like a lot of Mefites, you seem to have an axe to grind against Christiantity.

I value human life and I don't place preconditions on it. I believe human life is valuable in and of itself, and it need not serve any higher purpose or utility. It is not up to me to decide what lives are worth living. Tell me, what have you done that makes your life so precious out of the billions that walked this earth? You will live out your several decades and be completely forgotten, as will this infant who lived for one day. You will probably experience more pain and suffering than this baby, and your life may even be a "senseless tragedy," as you put it.

Why should you exist? What is the point of you being alive? What is your "Great Purpose?"

If there is no God above, then there is really only us. And then if you start degrading even that, you aren't left with much, are you?
posted by Acromion at 11:25 PM on September 6, 2009 [1 favorite]

This is a straw man argument. No one here - no one at all - argued that any human life is worthless

If you read my post, you will see that I did not imply that anyone on this message board argued that any human life is worthless.

or even that a fetus is worthless, something which is not in fact yet a human.

Oh really? ". . . not IN FACT yet a human." I like you how you put IN FACT there as if that automatically makes it a fact. A rather bold assertion. So where exactly does human life start? I suppose if you pull the fetus half way out of the vagina, while leaving the head in, you can suck out the brains before it crosses into human territory. But I know I know its a rare procedure.

The question is how best to honour that life - and sometimes a life might be honoured best by ending it, something that almost every pet owner comes to understand sooner or later, for example. I personally think that beating out that last possible dregs of that life in public is the less honourable solution.

Also, if you read my post again, I mentioned that I worked in hospice. I helped many people and their families through the process of dying. I am quite familiar with palliative care, and I also believe forgoing heroic procedures is quite honorable.

What I find dishonorable to life is that you (and others on this thread) have compared this to putting down a pet.
posted by Acromion at 11:43 PM on September 6, 2009 [1 favorite]

It's also a Glittering Generality argument. I only discovered this term a few months ago, and was surprised to see it apparently originated by Lincoln 150 years ago. "Glittering Generality" is so much more polite than "bullshit", but the general import is the same, and I think we'd be a lot better off if we start calling everyone on this basic substitution of good-sounding verbiage for actual analysis and fact-based discussion.

What was bullshit about my argument? I believe I made some cogent points; please address them.

I guess your post is a Glittering Generality, too. What with all its "originated by Lincoln" and historical background . . . it doesn't actually explain why my argument is a "Glittering Generality."
posted by Acromion at 11:51 PM on September 6, 2009 [1 favorite]

Tell me, what have you done that makes your life so precious out of the billions that walked this earth?

The stuff that I value about my life probably won't impress most people. I've fallen in love with awesome women. I've had awesome women fall in love with me. I got to perform my sister's wedding ceremony. I tried my damnedest to get Luis Rodriguez out of the 6th grade. I got to see Bonnie Raitt play in a bowling alley during Mardi Gras. I've gotten emails from strangers in Denmark saying they liked my music.

I've gotten to do things and experience things, things that I've chosen for myself. For me, what makes human life worth living is the opportunity to collect personally meaningful experiences. My life might not impress others, but *I* like it. But a baby who spends most of his 5 day life on pain meds and in the process of dying? That baby doesn't have a chance to carve out his own life, to choose his experiences. What is it about life itself that you find valuable? Why do you find meaning in the mere act of inhaling and exhaling oxygen, and having blood circulate in one's body? Respectfully, can you explain it at all, or is it some kind of "I feel there is value in every life because life itself is valuable"?
posted by 23skidoo at 12:09 AM on September 7, 2009 [2 favorites]

Mitrovar, suffering is suffering, no? The terminal baby suffers for a short time, the disabled for a lifetime...according to that logic we should have cleaned out a lot of longterm hospitals by now.... I hope you found that idea as offensive as I do. If so, ask yourself why it is offensive.

I couldn't have said it better myself. I had the personal experience of caring for people who were severely disabled, mentally and physically. I mean, wiping their butts, spoon feeding, cleaning bed sores, the whole works. At first, it was easy from my perspective to think that their lives were not worth living, simply because I (my ego) had a hard time comprehending life as such. I thought my life would not be worthwhile, so therefore, who else could possibly be OK living in such a condition? After I got to know these patients better, I realized that they had their own spark of consciousness, and no matter how minimal and confused that spark was, it would be the height of arrogance to summarily decide that spark is somehow less worthy of existing than my own.
posted by Acromion at 12:11 AM on September 7, 2009 [1 favorite]

So now, localroger, it's down to "evil" and "stupid?"

Stay classy, localroger.
posted by ambient2 at 12:12 AM on September 7, 2009

St. Alia of the Bunnies: Mitrovar, suffering is suffering, no? The terminal baby suffers for a short time, the disabled for a lifetime...according to that logic we should have cleaned out a lot of longterm hospitals by now.... I hope you found that idea as offensive as I do. If so, ask yourself why it is offensive.

The disabled do not suffer continuously, with no hope of ever improving or recovering in any way, or any real chance of feeling anything different. If they did, honestly, I don't think they'd want to go on living, and in fact, people in such a situation who can express their wishes frequently don't. We're starting to bump up against the side of the assited suicide debate, there.

Anyways, we're getting off my original topic here. I don't think the parents should have been forced into such a decision, honestly. The resources consumed are fairly minimal, and it's certainly less of a waste than say, buying a boat or something, so I really don't care much (especially since they avoided using heroic measures, which would have been very bad.) I don't think the parents made the best choice here, but I really don't think it was terrible, either - certainly the decision to abort would be incredibly hard for people who were originally pro-life, even if it may have been the right one.

The only reason I jumped in at this point was that I objected to you demonizing your opponents and using patronizing strawman arguments. Which you are still doing. You can't possibly compare a case where someone was biologically doomed from the start and was so malformed it's anyone's guess if they ever even achieved any form of consciousness at all to someone in a wheelchair. Almost all of your counter-arguments has been strawmen or slippery-slope argument tailor-made to demonize your opponents. Are you really interested in learning our views, or merely trying to make us look bad to advance your pro-life agenda?
posted by Mitrovarr at 12:49 AM on September 7, 2009

What was bullshit about my argument?

I haven't been following this thread and I don't want to wade into the arguments but to answer your question at some point all of our individually-developed morality is based on glittering generality. Jefferson finessed this in the Declaration of Independence with his "self-evident" truths; at some point all are truths are self-evident (or argued from external authority), so upon disagreement we have to agree to disagree and go from there.

My "self-evident" basis here is that the decision to bring a new life into this world is the mother's alone. And once she does bring this child into our world, I believe it is our collective responsibility to see that this life enjoys the fullnesss that life can offer.

But in the objective lens, life is cheap in this fallen world. Just look at WW2 where the major powers, especially us, were murdering innocent people in the thousands every day, or the 2 million people -- all mother's children -- the USA slaughtered in Vietnam from 1965 through 1972, or the 100+ Afghanistan villagers that got incinerated just last weekend, or the innocent victims of the death penalty that few stridently pro-life people give a shit about in this country.

we are saying yes to ALL human life.

See, we aren't, and we don't, which is why the feel-good stuff about honoring the life of a health-challenged infant is just a glittering generality at this point. We can wheel it out to back up and beautify the strong maternal and parental urge -- inherited from the millions and millions of parents that form each of our ancestral chains leading back to the slime pools of the primeval Earth -- to keep our offspring alive, but in the larger analysis the effort expended on palliative care for the critically unhealthy could arguably be better used on fixing somebody else's life who would otherwise go without.

Here I am talking about socialized medicine / death panels and rationing of public resources. If parents want to spend their own resources, or rely on private charity, then more power to them.

But if it were my call, sorry dude, we'll try again.
posted by Palamedes at 12:52 AM on September 7, 2009 [1 favorite]

posted by Belle O'Cosity Have you ever loved a junkie? Have you ever held one in your arms?

Jane says she's done with Sergio. He treats her like a rag doll.
posted by mattdidthat at 1:36 AM on September 7, 2009

What I find dishonorable to life is that you (and others on this thread) have compared this to putting down a pet.

Some of us have the capacity to extend a degree of compassion toward the animals in our families that includes giving them a quick and painless death. I find it bizarre that we aren't willing to consider that for our fellow humans, for our families and loved ones. I, for one, wish we could open that discussion without getting histrionic about it. Therein lies the comparison. I question your definition of honour that you find that dishonourable.
posted by Hildegarde at 4:13 AM on September 7, 2009 [1 favorite]

Alia: Localroger, I hope and pray you are some callow 18 year old who likes to hang out on the internet and whose favorite pasttime is WOW or something. Because if you are I have hope you will grow out of that opinion and see some nuances in these situations. Because otherwise, I weep for humanity.

Allow me to loan you a handkerchief. A very brief flirt with the mighty GOOG would have informed you that I am in my forties, and that my most widely distributed contribution to net.culture is a rather violent meditation on the idea that sometimes death is better than meaningless life.

This isn't an idea I'm likely to outgrow since I've spent most of my life growing into it.

ambient2: So now, localroger, it's down to "evil" and "stupid?"

I think I was pretty clear on that even in my first comment. It's evil with a lowercase e, for sure, but I think those are appropriate terms for the creation of unnecessary suffering so that you can wallow in it.

While that might seem a bit harsh for the Lauxes, who were obviously in the grip of powerful emotions, I do think it accurately describes the circus that assembled itself around them to turn their tragedy into a Lifetime channel event.
posted by localroger at 5:27 AM on September 7, 2009 [1 favorite]

sentimentalism taken a step too far...
posted by mary8nne at 6:34 AM on September 7, 2009

After I got to know these patients better, I realized that they had their own spark of consciousness, and no matter how minimal and confused that spark was, it would be the height of arrogance to summarily decide that spark is somehow less worthy of existing than my own.

Yes, it would have been. But this is why no one is talking about caretakers (whether aides or super specialist doctors, whether on the job for 1 day or 20 years) taking or even considering these kinds of decisions.
posted by Salamandrous at 7:27 AM on September 7, 2009

It goes without saying that this issue will always elicit strong opinions and strong emotions, as it cuts to our core values. I am sorry if any of my posts have been harsh.

I come from the starting point that human life is sacrosanct, and I understand not everyone believes this. I will admit that this value may have come from my Catholic upbringing, but it is a rational value no less.

Without being glitteringly general (heh), its a huge mistake for either side of this debate to cast the opposing side as stupid, evil, sentimentalists, backwards hicks, or Nazis. There are people on both sides of this issue who have very well developed, reasoned arguments for their position, and there are those on both sides who barely understand it at all.

That said, I can understand where the other side is coming from on this. Some people believe the more humane choice would be to offer the baby a quick death, and this is not an inherently evil choice. It does come out of sense of compassion.

But after seeing people live and die in all manner of circumstances, I have come to the conclusion that life need not fulfill any of our preconceived criteria. It is indeed hard to accept life in extreme cases like this. It seems like a senseless tragedy, and that it may be best to put that life out of its misery. But the point I am trying to make is that if we are to truly believe that human life is sacred, we must go the full hog with it. Once you start defining terms on which life is worth living, then you are debasing human life. Again, if you do not come from this starting point of life as sacred, then you are likely to disagree with me here.

Human life can be brief, deformed, full of pain, joy, rich in memories, or barely conscious at all. When you terminate Thomas out of mercy or pity, I believe you are making a judgement that is not yours to make. Who knows what Thomas really experienced during his brief life? Certainly he was not conscious in the adult, rational way we are, but is that a criteria for life? He was probably in pain, but every one of us has experienced pain and suffering. But it was clear that he was loved unconditionally. To fully accept life on life's terms, I believe we must accept all of it, warts and all. It is when we accept life under such harsh terms that we affirm life the most.

When I said earlier that I could see the story of all humanity lived out in Thomas' short life, I was being serious. We are all thrust onto this Earth, we all struggle, experience pain and joy, and then we die. Thomas lived out that story on a smaller scale than we are used to, and in a state of consciousness we are no longer familiar with having grown into our adult egos. But I argue that his struggle to survive for that brief time, and whatever feelings he felt, and whatever he offered to his parents, is no less valuable than what we experience in our lives.

Some people have commented on here that the parent's decision was self serving. I wonder how you would react if they made the opposite choice. Some would say it would be selfish to abort the baby because then the parents would not have to confront the pain and the raw humanity of having such a child. Some would say that it would be selfish because it is the easier way out.
posted by Acromion at 8:41 AM on September 7, 2009 [3 favorites]

When you terminate Thomas out of mercy or pity, I believe you are making a judgement that is not yours to make.

Well who makes such judgements if not people in the best position to? (I suppose you will say god, but I prefer Shakespeare: "the quality of mercy is not strained...."). I'm glad at least you acknowledge there is such a thing as "mercy killing." If you believe god gave you free will, that includes the ability to make judgements. To leave difficult decisions in god's hands is a cowardly rejection of god's gift.
posted by binturong at 9:02 AM on September 7, 2009

Maybe the couple has a totally different ethical framework they're dealing with. Since when has utilitarianism and the alleviation of pain become the only acceptable moral principle here? Heck, even atheists have different beliefs! The entire tone of this thread smacks of many being unable to see how any other system could even exist . . .

I think utilitarian ethics have become the background assumption of our society because it is most compatible with a consumer-capitalist culture. It considers worth measurable and comparable, so that everything has a price (so to speak). Ethical choices are made based on which deal is better - which outcome yields better returns. Our mindset is simply formatted in terms of economic loss/benefit terms so that utilitarianism is just taken for granted.

A part of me can't help thinking it a strange turn of events that parents who would never terminate can now screen for abnormalities so early in the pregnancy - it seems to make the process much more morbid, that they then spend the entire time preparing for the death of their newborn. Still, to each her own.
posted by mdn at 9:31 AM on September 7, 2009

St. Alia, I'm aware that everyone struggles to breathe when they die. I do not see the beauty in shoving a camera in their faces and then showing that to the world, especially not when they have no agency. I find it distasteful and I find your "it's a MIRACLE BABY" sentiment as offensive as your comparing disabled people to a non-viable fetus with NO CHANCE of survival beyond a few heavily-sedated days outside it's mother's womb.

This family's tragedy is exactly that, a tragedy. Their choice is not one that I would make, but there is a difference between discussing that and using their tragedy to promote one's own anti-choice agenda - especially when, as someone pointed out above, the couple has specifically said that they don't want an anti-choice message to be taken from the video.

You stay classy.
posted by ellehumour at 9:40 AM on September 7, 2009

I think utilitarian ethics have become the background assumption of our society because it is most compatible with a consumer-capitalist culture. It considers worth measurable and comparable, so that everything has a price (so to speak). Ethical choices are made based on which deal is better - which outcome yields better returns. Our mindset is simply formatted in terms of economic loss/benefit terms so that utilitarianism is just taken for granted.

You know nothing of utilitarianism. Go read the foundational document of the moral philosophy of utilitarianism before erecting your idiotic strawmen.
posted by Pope Guilty at 9:52 AM on September 7, 2009 [1 favorite]

I realized that they had their own spark of consciousness, and no matter how minimal and confused that spark was, it would be the height of arrogance to summarily decide that spark is somehow less worthy...than my own.

What I find dishonorable to life is that you (and others on this thread) have compared this to putting down a pet.

How do you reconcile these two opinions? How is it not arrogant to summarily decide that the consciousness experienced by animals is incomparably different to that of a human?
posted by jacalata at 10:03 AM on September 7, 2009 [1 favorite]

How do you reconcile these two opinions? How is it not arrogant to summarily decide that the consciousness experienced by animals is incomparably different to that of a human?

I'm aware of this contradiction and it is something I have thought about quite a bit. I have a prejudice toward human life because I believe it to be special. There is plenty of room for disagreement here. Who knows, I may come around some day and become a vegan :)
posted by Acromion at 10:22 AM on September 7, 2009

Acromion:

No, a fetus is not in fact yet a human being - a matter I demonstrated earlier in this thread.

A fetus is not a human being, not a person, as a matter of law. It's also not a human being as a matter of common custom. As I pointed out, above, it's a continuum - (almost) no one believes a 2-hour old fetus is human, everyone believes a 9-month fetus is for all practical purposes. Sorry if you find this idea a little confusing but many things work that way with a difficult grey area in the middle.

Thus I said that a fetus is "in fact not yet a human being" and I stand by that statement.

What I find dishonorable to life is that you (and others on this thread) have compared this to putting down a pet.

There's again a continuum between helping a pet to a dignified death, and helping a human to the same. Clearly, the life of a pet is not as significant, whatever that means, as the life of a human, but the fact is that these are living, aware creatures (self-aware creatures in the case of dogs!), they are our friends and, informally, our family, and as such deserve respect.

I'm sorry if this idea offends you. Perhaps you should look at yourself to see why you are offended. I have buried two parents and several friends - it is not as if I treat human death or suffering lightly.

I fear it will never be possible to come to an agreement. You are looking for black and white dividing lines - an example of such a line, perhaps not exactly your message, is that "all human life is sacred and must be kept alive at any cost" but "animals are animals".

I on the other hand might think that killing, let's not mince words here, a fetus who faces only a short life of suffering then death by suffocation might be the ethically best choice, but having your dog put down because you don't want to take care of it a "sin".

On the other hand, it makes it hard for me to generalize. If I knew that the dog was dangerous to a new baby in the second case, or that there was a chance that the fetus would survive in the first case, I might well change my mind.
posted by lupus_yonderboy at 10:49 AM on September 7, 2009 [1 favorite]

A fetus is not a human being, not a person, as a matter of law. It's also not a human being as a matter of common custom.

Fetuses also weren't necessarily considered human beings in the early days of Christianity--the Apostolic Constitution, the writings of St. Thomas Aquinas, and the writings of St. Jerome all reflect an attitude to abortion that's pretty similar to the current laws in most of the industrialized world: that abortion's acceptable during the first trimester, troubling during the second trimester, and permissible during the third trimester only in cases of serious risk to the life or health of the mother.
posted by Sidhedevil at 11:43 AM on September 7, 2009 [2 favorites]

Damn this is a depressing thread. So many of you are talking out of your ass. Guess what? It's easy to not judge. Just recognize it's not all about you and what you feel and your opinion has diddly squat to do with anything. This couple made an informed decision with their doctor. They could have kept it all a secret, but decided to share their story. And you think that gives you the right or even the vaguest awareness to judge. Disgusting. You know what's great about their decision to share? There are others out there who have a similar experience, who can relate, who have a pain in their heart that won't heal. This may help them. This may help this couple heal. This may help someone else faced with a similar situation. And that bit about being a waste of resources? They were on home hospice for 5 days not in a NICU for 5 months. What uninformed bullshit.
posted by dog food sugar at 12:09 PM on September 7, 2009 [5 favorites]

Pot, meet kettle...
posted by agregoli at 12:14 PM on September 7, 2009

Yeah - sorry. I'm pretty judgmental there myself. But I find the judgment in this thread for that couple and their personal healthcare decision upsetting.
posted by dog food sugar at 12:18 PM on September 7, 2009

Calling for people not to judge is calling for people to not engage in basic cognitive function. It sounds like what you're saying is that there is to be no criticism of behavior, which is... also stupid.
posted by Pope Guilty at 12:20 PM on September 7, 2009 [1 favorite]

Look, youre free to judge these people and their decisions in this heartwrenching ordeal. But if you are just posing intellectual pontifications without regard for the emotional circumstances and the clear moral ambiguity then your judgement lacks any subtsance
posted by freshundz at 12:25 PM on September 7, 2009 [2 favorites]

Man, give people some credit. If people are disagreeing with this couple's decision, that doesn't mean they're overlooking the emotional circumstances or the moral questions at play here.
posted by 23skidoo at 12:42 PM on September 7, 2009

I'm not asking people to not engage in basic cognitive function. I asking that people look past the first impulse to pass judgment and not think of it in terms of "what I would do is..." Of course we all realize this is a complex question of ethics as well as a personal emotional decision. You can discuss the ethics of a decision without blaming those involved for making what is assumed to be the wrong decision. But it's just noise to go on about what they did was selfish because I think whatever. It's about what is best for this family in this moment. Sorry I was so brash I didn't mean to offend and my language was offensive (I deal with issues of death and dying with some frequency and it's a sensitive subject for me at times). It's about the people involved. Too often everyone else wants to put in their two cents and it just doesn't have anything to do with it. We can learn from this, but I don't think that lesson is: what they did was wrong. It's more about letting people make their own healthcare decisions that involve their family with their doctor and then how do they heal and recover after that.
posted by dog food sugar at 1:01 PM on September 7, 2009 [6 favorites]

They could have kept it all a secret, but decided to share their story.

To you it's "sharing", to many of us it's "reality television".


And you think that gives you the right or even the vaguest awareness to judge. Disgusting.

There isn't some free zone where you get to deliberately put yourself and your beliefs out onto the public media but we don't get to comment. If you are going to show your brain-dead child suffocate to death on TV, we have every right to complain that this is morbid and unpleasant.

(By the way, in civilized discourse it's generally considered impolite to use the word "disgusting" to people you are talking to, even if you do disagree with them.)
posted by lupus_yonderboy at 1:05 PM on September 7, 2009 [3 favorites]

I would favorite dog food sugar a million times if I could.
posted by St. Alia of the Bunnies at 1:17 PM on September 7, 2009

You know nothing of utilitarianism. Go read the foundational document of the moral philosophy of utilitarianism before erecting your idiotic strawmen.

Well, I'd guess based on our respective specialities that I've read more on utilitarianism than you, though that doesn't mean my interpretations are necessarily better. I'm not trying to say it's not a good philosophy - just that it's based on an economic mindset. There are no absolutes, but things are determined rationally rather than sentimentally or communally. The notion of worth is not directly translated into dollars, but instead pleasure and pain, but it is still a rational, comparative set of outcomes, whereas other ethical philosophies are based on different criteria altogether - duty, character, sentiment, sanctity, moral truth, community, etc.

But it's no surprise that it gained ground in the 19th century, when the market was becoming central, and that Mill was a major proponent of it, as he was also an advocate of the free market. The way in which the philosophy is framed is generally a costs/benefits analysis. I am not claiming that utilitarians are themselves promoting a capitalistic consciousness, but simply that it is the closest to an economic approach to ethics. An approach based on character or duty or sanctity doesn't really make sense when you're used to thinking of things in terms of economic worth. But a utilitarian approach is easy to grasp when starting from that standpoint. (and sure, you could claim that someone would be more metaphorically socialistic than capitalistic if they followed utilitarianism, but that is just reactive to the market - an attempt to correct for negative outcomes, while still working within a market-based mindset - but that's a whole other discussion)

Again, this isn't a suggestion that these are determinations people are choosing so much as that this is just a given when raised in our culture - everything can be compared.
posted by mdn at 1:23 PM on September 7, 2009 [2 favorites]

I feel like after this thread we all need to go back and read Dickens' A Christmas Carol.

*Must* you keep doing that? To act as if you and people who agree with you are the sole bearers of compassion and morality is not polite.

We are not Scrooges who will cause the death of Tiny Timmay with our greed - though perhaps we would rather the effort spent on a dying braindead child instead be spent on some child that had some chance of surviving and thriving.

But actually, it's more or less the parents choice. What I at least object to is showing their child dying on television.
posted by lupus_yonderboy at 2:03 PM on September 7, 2009

(oops, my last comment referred to a comment very quickly deleted. Mods, feel free to fry it...)
posted by lupus_yonderboy at 2:05 PM on September 7, 2009

jbickers: a fetus is not, in fact a human being

objectively wrong
posted by jock@law at 12:11 AM on September 8, 2009

jbickers: a fetus is not, in fact a human being

That wasn't me that said that.

Frankly, I'd like to see a scientific validation of such a bold statement. I don't believe one can be accurately made.
posted by jbickers at 4:00 AM on September 8, 2009

A fetus is a being, and it is human. (What, do you think it's a dog?)

If that's not what you mean by "human being", I think you need to be a little more explicit about what you actually do mean. It would be great if there were some standard terminology for these concepts that everyone agreed to use.
posted by Crabby Appleton at 6:36 AM on September 8, 2009 [1 favorite]

No, no, I'm not arguing with you, I'm saying I wasn't the one who said that. Lupus yonderboy did, and I still disagree with him. He was directing the comment at me, not quoting me.
posted by jbickers at 6:49 AM on September 8, 2009

And just to reiterate, to make it very clear: I would very much like to see a scientific backing for Lupus_yonderboy's matter-of-fact declaration that "a fetus is not, in fact a human being."
posted by jbickers at 6:54 AM on September 8, 2009 [1 favorite]

A fetus is a being, and it is human.

This is certainly too vague a description. Otherwise, a tumor would be a human being.
posted by allen.spaulding at 7:01 AM on September 8, 2009

According to a sonogram done in my 6th month, due to "abnormalities" detected--my son's foot measured longer than his thigh bone. Bone displasia, they called it.

He has Grieg Cephalopolysyndactyly Syndrome. Google your fu. Developmental disabilities, yes, but a far cry from a foot measuring longer than a thigh bone.

I remember asking my mother if I would love him. I can't imagine life without him.
posted by 8-bit floozy at 1:34 AM on September 12, 2009 [1 favorite]

A fetus is not a human being, not a person, as a matter of law.

You're going to need a citation for that. I'm unaware of any support for that statement.

It is true, however, that a fetus is not a citizen, as a matter of law, in the United States.
posted by jock@law at 12:33 AM on September 27, 2009

Go away and take your necromancy with you.
posted by Pope Guilty at 8:58 AM on September 27, 2009

That word doesn't mean what you think it means.
posted by jock@law at 1:53 PM on September 27, 2009