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carabiner96


Mar 24, 2008, 8:39 AM
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Would you have the courage?
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"When a baby is destined to die"

I found this article on the front page of MSNBC today very moving. I'm not putting it up here to fuel a pro/anti choice debate; I am pro choice, but I truly believe this story has nothing to do with that.

I don't think I am strong enough to do what these women and their families decided to do. They are very brave indeed.

I'm curious if others here would make the same choice, and why.

In reply to:
Jeanne Deibert knew as soon as she saw the ultrasound.

It didn’t matter that the doctor told her that what looked on the screen like pockets in her son’s brain would likely disappear as he got closer to birth. That things were probably fine. That she shouldn’t worry too much about her baby.

She was his mother. And she felt certain that something was wrong.

As her pregnancy progressed throughout the winter of 2005, other tests raised more red flags until finally the phone rang one afternoon as she stood in the yard of her Seattle home. On the other end was a geneticist, confirming the results of her amniocentesis: the baby had Trisomy 18.

The chromosomal abnormality, which causes heart, kidney and severe mental disabilities, is usually fatal. It occurs in about 1 in 6,000 live births, but many babies who have it die before they are born and those who live often only survive a few days. Less than 10 percent live one year or more.

As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could...

http://www.msnbc.msn.com/id/23682263/


dingus


Mar 24, 2008, 8:49 AM
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Re: [carabiner96] Would you have the courage? [In reply to]
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I don't know. Forgive me, but I don't want to know.... if I have that sort of courage.

Cheers
DMT


notapplicable


Mar 24, 2008, 9:05 AM
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In reply to:
Robbie was barely breathing when he was born on May 18, 2005

In reply to:
Then Steve, 43, cradled him and started introducing his youngest son to the crowd of friends and family who had gathered in their hospital room.

“It was clear I was taking him around to say hello and goodbye,” he remembers.

In reply to:
The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.

In reply to:
In the days that followed after they went home from the hospital, Steve and Jeanne took him to the beach, to church and to visit friends.

In reply to:
When the family wanted to take Robbie on a car trip across the state to visit relatives, Stepping Stones helped put them in touch with a hospice in another city in case Robbie died on the way.

In reply to:
Jeanne wasn’t sure exactly how much Robbie was aware of. A nurse told her he was probably deaf. She doesn't know how much he could see and wonders about his brain function. But her goals for his life were simple.

“I wanted people to experience him,”



This last quote says it all.


If you were trying to evoke a response, you succeeded. That story is one of the single most twisted and perverse things I have ever heard. The way that those people tortured and exploited that childs body is beyond excuse.

It doesnt take courage to act as they did, it takes a very special blend of sadism and masochism.


Partner macherry


Mar 24, 2008, 11:14 AM
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no i don't believe it is sadistic or masochistic. it's parents grieving for a child, trying to love him the best way they can. like biner i'm not going to make this into a pro choice/pro life debate. this is very tragic, and unless we've walked a mile in their shoes, who are we to judge.

torture............well, having a child that's being born to die...........that's about the hardest thing a parent can live through!!!!


lena_chita
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Mar 24, 2008, 11:20 AM
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I would not call it "courage". I think it is something else.

Anyway, this is the important take-home lesson that I wish was explained to every expectant mother BEFORE she decided to do any of these screening tests:

In reply to:
As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.

But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.

“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.


carabiner96


Mar 24, 2008, 11:25 AM
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Hmm, yes, courage may be the wrong word, but anyone dealing with the choice in the first place has to be very strong to make it through. I wonder if it may have helped that family already having one child.

This article really got to me, I was choking back taers by the end, imagining what I would do in that situation, how i would tell people that the baby I so badly wanted wouldn't be mine after all.


Partner macherry


Mar 24, 2008, 11:30 AM
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lena_chita wrote:
I would not call it "courage". I think it is something else.

Anyway, this is the important take-home lesson that I wish was explained to every expectant mother BEFORE she decided to do any of these screening tests:

In reply to:
As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.

But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.

“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.

i think it does take courage for any parent to deal with any birth defects.


carabiner96


Mar 24, 2008, 11:32 AM
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I wonder if my parents freaked out a little bit when I was born, or if they even knew about my arm before I popped out (like from and ultrasound) or if it was just one big suprise. I've never bothered to ask them, it's never really came up. But at least I was healthy (too healthy, if you ask my mum ;) )


Partner macherry


Mar 24, 2008, 11:52 AM
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well, as a parent, i think missing part of an arm would surprised the hell out of me, but after the initial surprise and knowing my child was healthy, i would be okay.

i think that finding out that the child you made plans for would die quickly after chldbirth or you decide to terminate the pregnancy, would be devastating.


notapplicable


Mar 24, 2008, 12:28 PM
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lena_chita wrote:
Anyway, this is the important take-home lesson that I wish was explained to every expectant mother BEFORE she decided to do any of these screening tests:

In reply to:
As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.

But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.

“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.


Not trying to be argumentative but I'm not sure I follow you here.

I cannot imagine a scenario under which an expecting parent would not be better off with knowing about the development of their child, be it normal or abnormal. Even if it was something non life threatening like a developmental problem or deformity you would beable to get ahead of the curve (so to speak), both psychologically and in the real world care and environment you would need to provide for your child. If your child is one of the unfortunate few who stands no chance of living a long or healthy life outside of the womb you would be able to act accordingly.


notapplicable


Mar 24, 2008, 12:48 PM
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Re: [macherry] Would you have the courage? [In reply to]
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macherry wrote:
torture............well, having a child that's being born to die...........that's about the hardest thing a parent can live through!!!!

Yes, yes it is and its a fate I wouldnt wish on anyone but that doesnt mean they need to drag that child into their suffering.

They had the opportunity to do a truly corageous thing and take the burden of their circumstances squarely on their own shoulders. Instead they choose to lean heavily, crushingly, on the one person who had the least obligation to bear any burden.

That child was innocent of all things and should not have been asked to carry any of the weight of his parents decisions.


clausti


Mar 24, 2008, 12:52 PM
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notapplicable wrote:
lena_chita wrote:
Anyway, this [frequent inability to change the outcome] is the important take-home lesson that I wish was explained to every expectant mother BEFORE she decided to do any of these screening tests:

Not trying to be argumentative but I'm not sure I follow you here.
... If your child is one of the unfortunate few who stands no chance of living a long or healthy life outside of the womb you would be able to act accordingly.

if i may impose- i believe what lena_chita was saying is that if you are one of those people who is not ever going to terminate a pregnancy, you should think long and hard about if you would actually want to know about terminal conditions. and even if you don't want to know about terminal conditions, what DO you want to know about? deafness? blindness? number of fingers and toes? chromosome count? (down's syndrome, plus what the kid in the article died of). i know my catholic aunt (three pregnancies after age 35, three wonderful kids) didnt get any tests because, "what would i do about it?" if you're a person who is fatalistic enough to follow gods will on any pregnancies, do you really want to know information you cant do anything about? i think some ppl dont. and that is what the medical professionals need to urge people to consider before they test some of those untreatable conditions.


clausti


Mar 24, 2008, 12:54 PM
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notapplicable wrote:
macherry wrote:
torture............well, having a child that's being born to die...........that's about the hardest thing a parent can live through!!!!

Yes, yes it is and its a fate I wouldnt wish on anyone but that doesnt mean they need to drag that child into their suffering.

They had the opportunity to do a truly corageous thing and take the burden of their circumstances squarely on their own shoulders. Instead they choose to lean heavily, crushingly, on the one person who had the least obligation to bear any burden.

That child was innocent of all things and should not have been asked to carry any of the weight of his parents decisions.

asking for clarification, cause i just can't tell- do you think they should have terminated the pregnancy?


dingus


Mar 24, 2008, 12:55 PM
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notapplicable wrote:
That child was innocent of all things and should not have been asked to carry any of the weight of his parents decisions.
How can you conceive of a world where this is not so?

DMT


notapplicable


Mar 24, 2008, 1:11 PM
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clausti wrote:
notapplicable wrote:
lena_chita wrote:
Anyway, this [frequent inability to change the outcome] is the important take-home lesson that I wish was explained to every expectant mother BEFORE she decided to do any of these screening tests:

Not trying to be argumentative but I'm not sure I follow you here.
... If your child is one of the unfortunate few who stands no chance of living a long or healthy life outside of the womb you would be able to act accordingly.

if i may impose- i believe what lena_chita was saying is that if you are one of those people who is not ever going to terminate a pregnancy, you should think long and hard about if you would actually want to know about terminal conditions. and even if you don't want to know about terminal conditions, what DO you want to know about? deafness? blindness? number of fingers and toes? chromosome count? (down's syndrome, plus what the kid in the article died of). i know my catholic aunt (three pregnancies after age 35, three wonderful kids) didnt get any tests because, "what would i do about it?" if you're a person who is fatalistic enough to follow gods will on any pregnancies, do you really want to know information you cant do anything about? i think some ppl dont. and that is what the medical professionals need to urge people to consider before they test some of those untreatable conditions.

OK, I guess I can see that perspective.

Termination completely off the table. I can still see a lot of benefit to being able to line up a team of medical professionals and therapists to give your child the best possible shot at living a long and healthy life.

You would also beable to prepare your self for any additional care you may need to give beyond all that is required by a perfectly health new born.

My friends just had their second child (a little cholicy but completely health, thankfully) and they have their hands full as is. The learning curve with children is crazy steep, if a person had to contend with special care needs I cannot imagine how it would be a bad thing to get ahead of the game.

I see the perspective but the down sides are so small compared to the benefits. Other than being cost prohibitive, I just dont see a good argument for not knowing.


notapplicable


Mar 24, 2008, 1:12 PM
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clausti wrote:
notapplicable wrote:
macherry wrote:
torture............well, having a child that's being born to die...........that's about the hardest thing a parent can live through!!!!

Yes, yes it is and its a fate I wouldnt wish on anyone but that doesnt mean they need to drag that child into their suffering.

They had the opportunity to do a truly corageous thing and take the burden of their circumstances squarely on their own shoulders. Instead they choose to lean heavily, crushingly, on the one person who had the least obligation to bear any burden.

That child was innocent of all things and should not have been asked to carry any of the weight of his parents decisions.

asking for clarification, cause i just can't tell- do you think they should have terminated the pregnancy?

Yes.


notapplicable


Mar 24, 2008, 1:21 PM
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dingus wrote:
notapplicable wrote:
That child was innocent of all things and should not have been asked to carry any of the weight of his parents decisions.
How can you conceive of a world where this is not so?

DMT


Within the context of this discussion, I think it is clear they should have removed the child from the equation as soon as possible. Perhaps I should have phrased it as "future weight".

In a broader sense? You cannot and touche.

Tis simply the nature of things I suppose.


clausti


Mar 24, 2008, 1:27 PM
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carabiner96 wrote:
This article really got to me, I was choking back taers by the end, imagining what I would do in that situation, how i would tell people that the baby I so badly wanted wouldn't be mine after all.

you know the only part of that article that really touched me? those parents' other kid, giving his dead baby brother the teddy bear, in *total and complete uncomprehension* of what was going on. i feel bad for that kid.


i'll go ahead and venture some coments that are going to make people doubt my possession of a soul, though- that article was fucking appalling.

mildly tangential, but from the article:
In reply to:
"Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,”

i am bludgeoned by my own complete and utter lack of comprehension as to why you'd keep that pregnancy. lethal diagnosis at 12 weeks? you're going to go through *6 months* of dead baby prep and keep it? so you can hold your dead baby? why oh why oh why oh why would you do that? [shakes head to clear it]


but babies like the one in the article, well... i know that they said they wanted to hold it (cant for the life of me imagine why) but i feel like another key piece of info the article leaves out is how far along the pregnancy was when they got the diagnosis.

in the rare case that you have a late second trimester abortion, one of the (now illegal) options is so called "partial birth abortion," which results in, you guessed it, an (intact, minus the brain) body, that you can hold. and name. and bury. THIS is what that is for.


sorry for the rambles, just reeling a bit. and a lot depends on how far along you are when you get the diagnosis, if it was really late term, week 30+, go ahead and induce and hold your dead baby, but, week 12? (entirely possible at that age, with chorionic villi sampling) hell no. week 16? (amnio) again, sorry, hell to the no.


oh, and the part that demonstrates my lack of soul- how the fuck can taking your belly fishing be a parenting experience? i mean, i know people read to their bellies, with some expectation that it might learn the mother's voice, but baseball games? picnics? its in utero, it has no fucking clue. so, while it might make YOU feel better, makes no difference to your terminal fetus, so why call it "a parenting experience" ?? ?????


clausti


Mar 24, 2008, 1:31 PM
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notapplicable wrote:
I see the perspective but the down sides are so small compared to the benefits. Other than being cost prohibitive, I just dont see a good argument for not knowing.

the sampling methods they use to diagnose genetic abnormalities increase your chance of miscarriage, esp, from what i understand, if you are a higher risk pregnancy to begin with. (first baby 35+, previous problems carrying to term, ect).

so if you really want the baby, ESP if you'd never terminate, ESP if you are older with no live kids yet, or if it was really hard for you to conceive... you just might skipit.


(This post was edited by clausti on Mar 24, 2008, 1:33 PM)


carabiner96


Mar 24, 2008, 1:38 PM
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Wait, you mean that the tests themselves increase the risk of a miscarriage?


jeebus! it's a catch 22!


notapplicable


Mar 24, 2008, 1:45 PM
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clausti wrote:
notapplicable wrote:
I see the perspective but the down sides are so small compared to the benefits. Other than being cost prohibitive, I just dont see a good argument for not knowing.

the sampling methods they use to diagnose genetic abnormalities increase your chance of miscarriage, esp, from what i understand, if you are a higher risk pregnancy to begin with. (first baby 35+, previous problems carrying to term, ect).

so if you really want the baby, ESP if you'd never terminate, ESP if you are older with no live kids yet, or if it was really hard for you to conceive... you just might skipit.

Yeah, see thats a real and tangible reason to limit the scope of testing a person would have done.

If the circumstances were such that the risks were prohibitive (perhaps thats the wrong word) then I wouldnt argue with the decision. Its just the idea that a person wouldnt want to know gives me pause.


Partner macherry


Mar 24, 2008, 3:09 PM
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clausti wrote:
oh, and the part that demonstrates my lack of soul- how the fuck can taking your belly fishing be a parenting experience? i mean, i know people read to their bellies, with some expectation that it might learn the mother's voice, but baseball games? picnics? its in utero, it has no fucking clue. so, while it might make YOU feel better, makes no difference to your terminal fetus, so why call it "a parenting experience" ?? ?????

i think the fetus was carried to term and the child was born alive. They spent the few weeks their child was alive doing the above mentioned activities. personally, it wouldn't have been a choice i would have made, finding out that info in the first trimester. The article doesn't state when the anomalies were found, but i have had friends notified in the last trimester, close to the due date, that their child would be born, only to die of birth defects in the few weeks after birth. heart wrenching, but they spent what little time they had, bonding with the child and comforting themselves and the chlld with the little time they had.


tolman_paul


Mar 24, 2008, 3:10 PM
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The best statement I've ever heard regarding why God gives parents children with disabilities is that parents and those around them are perfected by the "imperfection" of those born with disabilities.

I honestly can't say how I'd react in that situation, though I would like to think I'd act the same as the parents in the article.

In a similar vein to the story a friend of my wife's was diagnosed with cancer while she was pregnant. The doctors told her she would have to abort the child as the child would die during her treatment, and put her life at risk as well. She and her husband elected to go through with the pregnancy and cancer treatment, and now almost 10 years later mom and daughter are fine.


dingus


Mar 24, 2008, 3:19 PM
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Its the mother's decision. That's all there is to it. Yall's opinions are interesting, but 100% irrelevant, sorry.

I hope your opinions are only relevant when YOU PERSONALLY are carrying a baby, and at no other time mind you.

This is WHY Right to Choose is so important. Somewhere madness and clinical efficiency lies humanity. It is not a science equation. Its not a divinity experiment either. Its a situation that modern medicine is going to make worse, not better, in our childrens' futures.

It is the mother's choice. No one else's.

DMT


thomasribiere


Mar 24, 2008, 3:39 PM
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It's mother's choice. Of course. In her case, I would call it stubbornness. Or will to suffer. Or blindness. With maybe even the expectation of some kind of miracle. But wait, she's Catholic... Crazy

Anyway, to answer 'biner's question, I don't what I would heve done, though I suppose I would have chosen abortion.

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