Down syndrome babies and abortion

[Delta]

This is shocking to me.

About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.

Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call” network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.

The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.

Prenatal Test Puts Down Syndrome in Hard Focus (http://www.nytimes.com/2007/05/09/us/09down.html?ei=5088&en=ccf8eef18ff478e4&ex=1336363200&partner=rssnyt&emc=rss&pagewanted=print)

[kris97]

Oh, God. I can't even ... articulate how terrible that strikes me.

(And, FWIW, I'm pro-choice)

[sea74]

Wow! 90%? That is so, so sad.
I was on a fertility message board the other day and there was a whole section for women who choose to "selectively reduce" multiples from fertility treatments.
There was one thread titled "Horrid Genetic Condition. Have no choice to abort." When I clicked on the link, she was talking about Downs. I expected it to be something truly "horrid." I was shocked that she was feeling that way.
I'm not belittling the condition but I thought her reaction was cold.

But I'm Pro-LIfe.

[amew]

A close friend who is an OB-GYN recently told me that in his experience about 80% of fetuses diagnosed with Down Syndrome are aborted, so I am not that shocked to hear it is even a bit higher than that, though I was surprised to hear the numbers were that high when he first told me.

[alisong]

I'm not surprised. I think this is one of those issues where everyone says "oh no, I'd never abort a Downs fetus" but when they're actually faced with the decision, it's a little more difficult.

[lml41981]

We've opted not to have testing because it wouldn't alter our choice at all, but if we did want testing and the results of our tests would have factored into our decision, I wouldn't appreciate being sent to a group of people who would pressure me one way or the other. I'd want to make the decision on our own and then seek a support group...not the other way around.

It isn't my choice to decide for other women...even if 90% do decide to terminate for one reason or another...and even if their choice weren't the same as that which I'd make. It isn't my place to decide.

[lawyerlee]

I've always kind of wondered why so many people do the testing for Down's if they would have the baby either way, but I guess this sort of answers that: most people don't intend to go forward if they find out the baby has it.

I guess I find it kind of hard to judge people for making that choice. Is it really any worse than getting an abortion for other reasons? I'm just thinking out loud here. I'm sorry it happens, but I guess I'm not particularly appalled by it, though I certainly don't mean to sound cruel or insensitive. And I do think it is great that people are trying to increase awareness of what the diagnosis really means for the child and the parents. Perhaps more people would choose to keep the babies if they had more information about what to expect, though I don't think they should be forced to receive this information or anything.

[tenofcups]

That number sounded very high to me, but I guess it comes down to the phrasing -- it's 90% of women who choose to be tested and the test is a choice. As Lawyerlee noted, it's unlikely that women who would choose to continue the pregnancy regardless of the results would test for that in the first place so the numbers do make sense.

FWIW, I've since had a miscarriage, but at 43 I had every intention of having amnio and almost certainly would have had an abortion if a chromonsonal abnormality had shown up. And while I respect what these parents are trying to do, I would not have been remotely interested in meeting with them. As long as it's optional -- and it sounds like it is -- I certainly have no objection to potential parents meeting with existing parents of children with Down's Syndrome IF THEY WANT TO.

[Delta]

The number was shocking to me because, well, 90% is a lot. Plus, the termination would have to occur in the second trimester because the diagnosis can't be made until then. I suppose the vast majority of those who are getting the amnio to confirm the diagnosis already know they won't go forward if it's positive, thus the high percentage? I don't know.

Still, the dwindling numbers of people with Down syndrome is pretty striking.

Is it really any worse than getting an abortion for other reasons? I'm just thinking out loud here.I think it just gets us into that grey area of...where do we draw the line when it comes to aborting babies when we find out they are not as we want them to be. I mean, there are conditions that are incompatible with life that are diagnosed prenatally, but Down syndrome most of the time is not one of those conditions.

To me, however, as someone who thinks abortion is wrong, in a perfect world that line shouldn't even exist anyway.

[ejs]

I think it just gets us into that grey area of...where do we draw the line when it comes to aborting babies when we find out they are not as we want them to be. I mean, there are conditions that are incompatible with life that are diagnosed prenatally, but Down syndrome most of the time is not one of those conditions.

We should all only draw the line for ourselves, not anyone else. If you (general you) don't want any prenatal testing, don't have it. If you don't want to have an abortion, don't have one. If you don't want to carry a fetus to term, don't. If you want to raise a child with DS, do it. It's YOUR choice.

[Delta]

I understand what you are saying, ejs.

I just think it's crazy that based on that logic it may be possible in the future to find out all sorts of say, physical things about your unborn baby - hair color, eye color, etc - and abort if you don't have the blonde kid you want. Or abort if you are having a girl and want a boy (which I suppose you can obviously do now.) Or abort if your baby is predisposed to developing cancer as a child. Or has a cleft lip and palate (as I do). Or whatever. I'm not saying all or most or even many parents would do that, but that is where the logic takes us. As a mother in that article says, it is (or becomes) about ethics.

[Rico'sAlice]

Ok, to put the "where to draw the line" question in other terms: Do you, (general, whoever feels simply "whatever an individual chooses") feel the same way if the mother were to get pregnant, go to 20 weeks, and keep aborting girl babies until they managed to be carrying a boy?

I'm not saying in terms of what the law should be. But, to bounce off of what I think Delta is getting at, even if you are entirely pro-choice, does that not (aborting due to undesired gender, could have been boy v. girl instead, of course) give you a different feeling than a woman having an abortion b/c she can not/does not want to have/raise any baby, at all?

[I realize that is REALLY awkward wording, but can't figure it out better at the moment.]

ETA- X-posted with the last few posts.

[kris97]

I think we can recognize that it's a choice while still remaining uncomfortable with the decision on this basis. How do we feel about parents in countries that value male children selectively aborting female fetuses (as happens way too often in China and India, for instance)? Is this still a valid choice?

I am pro-choice, but this kind of decision is really troubling to me. If it were a more devastating chromosomal disorder, then, I am very sympathetic, but I guess I just don't see how the life of a person with Down Syndrome is so terrible, so not worth living, as to justify the decision that many are apparently making.

[kris97]

But, to bounce off of what I think Delta is getting at, even if you are entirely pro-choice, does that not (aborting due to undesired gender, could have been boy v. girl instead, of course) give you a different feeling than a woman having an abortion b/c she can not/does not want to have/raise any baby, at all?


Bingo. That's also where I would draw the distinction. I would make an exception for chromosomal abnormalities where the baby would suffer devastating disabilities/have little quality of life - but I think that's much different than Down's.

[Delta]

I'm not saying in terms of what the law should be.Right, exactly. This is more of an ethical discussion.

[lawyerlee]

Honestly, I may not agree with or condone a woman's rationale for having an abortion, but I don't feel entitled to tell her how to exercise her choice. I don't happen to think Down Syndrome or gender preferences are good or moral reasons for getting an abortion, but because choice is important to me, I'm not about to start picking and choosing the instances where I think the person made the "right" decision. To me that's what choice is about.

[sue-bert]

I read that article this morning and also found that 90% statistic quite surprising. I would have guessed it was closer to, say, 50%.

[jnettie]

As far as taking statistics with a grain of salt, I'm sure it's 90% of parents who do genetic testing. What we don't know is the % of parents who do genetic testing.

I am pro-choice, but this bothers me. Dare I say I agree with Delta? It seems that the choice to abort a baby with Downs is one of convenience, not necessity. I would never want to legislate what instances should allow abortion, but I think this is a good discussion about morality to have. Are these parents having abortions to prevent their child from a painful life or do they just not want to change their lives to care for a special needs child?

[thedoorchick]

I think we can recognize that it's a choice while still remaining uncomfortable with the decision on this basis. How do we feel about parents in countries that value male children selectively aborting female fetuses (as happens way too often in China and India, for instance)? Is this still a valid choice?

I am pro-choice, but this kind of decision is really troubling to me. If it were a more devastating chromosomal disorder, then, I am very sympathetic, but I guess I just don't see how the life of a person with Down Syndrome is so terrible, so not worth living, as to justify the decision that many are apparently making.

I agree with this (except the part about being pro-choice ;) )

[diam124]

I'm not saying in terms of what the law should be. But, to bounce off of what I think Delta is getting at, even if you are entirely pro-choice, does that not (aborting due to undesired gender, could have been boy v. girl instead, of course) give you a different feeling than a woman having an abortion b/c she can not/does not want to have/raise any baby, at all?

Yes, thank you for writing that. That's my feeling as well.

Someone please correct me if I'm wrong (I'm guessing I probably am), but I thought that prenatal testing for Downs only tells you what the odds are of you having a baby with Down Syndrome. I didn't think they could really give a definite diagnosis before the baby is born. Is that incorrect?

[alisong]

Someone please correct me if I'm wrong (I'm guessing I probably am), but I thought that prenatal testing for Downs only tells you what the odds are of you having a baby with Down Syndrome. I didn't think they could really give a definite diagnosis before the baby is born. Is that incorrect?A definitive diagnosis can be given by amniocentesis (looking at the actual chromosomes), but even that doesn't predict the variability of the syndrome.

I guess my problem with the original program discussed (to refer parents to others with an affected child) is that it seems likely they'll only meet the higher functioning kids, not those who are institutionalized or severely affected.

[amew]

It seems that the choice to abort a baby with Downs is one of convenience, not necessity.

But aren't most abortions a convenience and not a necessity? I am not sure why aborting because you don't want the additional stress of raising a DS child, don't believe that the addition of that child would be best for your existing family, or don't feel that you have adequate emotional/financial/family resources to raise that child is any more or less disturbing than aborting a healthy child because don't feel up to raising a child at all at the time. While I agree that there is something disturbing about these stats, on another level, I am not sure why not feeling up to the challenge of raising a DS baby is any different than not feeling up to the challenge of raising any baby. DS is no small matter, and it's not all that surprising that many people simply don't want to attempt to cope with it, just as many people don't want kids in the first place.

[jajacobsen]

That number sounded very high to me, but I guess it comes down to the phrasing -- it's 90% of women who choose to be tested and the test is a choice. As Lawyerlee noted, it's unlikely that women who would choose to continue the pregnancy regardless of the results would test for that in the first place so the numbers do make sense.

FWIW, I've since had a miscarriage, but at 43 I had every intention of having amnio and almost certainly would have had an abortion if a chromonsonal abnormality had shown up. And while I respect what these parents are trying to do, I would not have been remotely interested in meeting with them. As long as it's optional -- and it sounds like it is -- I certainly have no objection to potential parents meeting with existing parents of children with Down's Syndrome IF THEY WANT TO.

I completely agree with this. I am 41 next month and TTC and I would end such a pregnancy. Damn me if you will. Such a choice is much, much different than choosing to abort a healthy/chromosomally normal fetus based on gender.

A sister of a close friend did have amnio and was positive for Downs. She chose to have the child. While she loves her child, life is very, very different and financially much, much bleeaker for her than the families she met with when making her decision. These families were usually had higher-functioning Downs children and were very willing to share the positive aspects of their lives.

However, she was not so lucky and her child will not be higher functioning. I wish she had met with parents whose lives were very hard with a Down's child so she could have had more balanced input. She may have made the same decision, but she would have had more time to financially and emotionally prepare.

So I really think we should all consider the grim reality of it all before we sugar coat what life might be like and believe it is all like the show Life Goes On.

I would not rush to judge.

[gayle]

We should all only draw the line for ourselves, not anyone else. If you (general you) don't want any prenatal testing, don't have it. If you don't want to have an abortion, don't have one. If you don't want to carry a fetus to term, don't. If you want to raise a child with DS, do it. It's YOUR choice.


Well said!! I totally agree.

[ThreeYell]

it's unlikely that women who would choose to continue the pregnancy regardless of the results would test for that in the first place so the numbers do make sense.

I don't know that this is true. The testing is considered very routine. I had it with DS even though I had no intention of terminating just because I wanted as much information and, if necessary, time to prepare as possible. Now, the "test" is usually a detailed ultrasound at around 12 weeks. Most people aren't going to turn down the opportunity for a free ultrasound. It's fun to see the baby.

[amew]

I suspect ThreeYell is correct--certainly not everyone does prenatal screening, but I think the percentage who accept it when offered is fairly high (anybody have any stats on this?). And plenty of people who say they would never terminate have the screening anyway because they want to prepare for a child with a disability or illness if necessary. No doubt some of those people who think they wouldn't terminate but want to be prepared end up in the 90% who do terminate once faced with the reality of a diagnosis.

Edited for grammar.

[RobynScott]

I don't know that this is true. The testing is considered very routine. I had it with DS even though I had no intention of terminating just because I wanted as much information and, if necessary, time to prepare as possible. Now, the "test" is usually a detailed ultrasound at around 12 weeks. Most people aren't going to turn down the opportunity for a free ultrasound. It's fun to see the baby.

Ditto Three Yell. I wanted the tests so that I could be prepared - financially and emotionally for a DS baby. I will admit - DH had different views (at least in the abstract - not sure what would have happened if our baby did turn out to have DS) about whether or not to abort - but no matter what, we wanted to be prepared. I would not have been willing to abort - if we were having a DS baby - we might have the baby at a different hospital, be prepared for heart surgery or other complications early on - and in general, prepare our lives for a special needs child.

I also agree with the posters who say that there is a huge difference between aborting b/c of gender and aborting b/c of serious (ie, fatal) disorders. I also agree that even though aborting a child would not be the right decision for me - and my family - it's not my decision to make for anyone else.

[Ericka_Jarett]

That is crazy 90%.

We have been taking photos for Special Olympics for the last few years and after seeing people of all ages (they have a baby program as well) all the way up to people in their 60s particpating, it really an eye opener. It doesn't matter that they win or not, they cheer for each other on and give high fives for a great effort. After participating with the program we decided to never test for Downs. Lots of false positives and we knew we wanted the baby no matter what so figured why bother testing.

[fuzzy]

This is one of those things that, try as I may, I just don't "get" it. I try very hard not to judge, as I believe this to be a personal issue (and I am firmly pro-choice), but I'd be lying if I said I didn't ever judge.

Choosing to have an abortion b/c of an unplanned pregnancy *feels* different to me than planning to get pregnant and then choosing to abort b/c of a something that a prenatal test uncovered. I've been slammed before for saying this, so let me clarify that I'm saying this as a *personal* stance: I don't think you should have kids if you aren't prepared to deal with something like this (and this is one of many reasons that we are not having children). Life is full of unexpected stuff and you never know what will happen -- just because you give birth to a child with otherwise normal abilities doesn't mean that child will have those abilities through out his or her life.

I think if you asked my parents -- mostly my dad -- 33 years ago if he could handle raising a child with disabilities, he'd say no. He likes things nice and clean and doesn't do well with challenges. But, again, life throws curve balls all the time and, low and behold, here he is 33 years later parenting a kid with developmental disabilities. It happens, people live on, and life doesn't stop.

[Asha]

Choosing to have an abortion b/c of an unplanned pregnancy *feels* different to me than planning to get pregnant and then choosing to abort b/c of a something that a prenatal test uncovered.

i thought 50% of pregnancies carried to term were unplanned, so many women who are going to get the prenatal testing for downs didn't exactly have planned pregnancies. i know that they are not aborting bc of the unplanned part, but that may play another role in a woman's choice to abort a downs baby. handling an unplanned pregnacy, plus the added stress of the possibility of downs, may be too much for a woman to handle.

i have never worked directly with children with downs, but i have worked with many children with special needs. i felt like the resources given to the parents were inadaquate. it seems like you have to be an extremely proactive parent to get the child the resources s/he needs, and many parents especially in underserved areas have difficulties tapping into those resources. i don't know if there is enough support for those parents of children with downs. it is one of the reasons i am against a law against abortion. this country hasn't been willing to give all the living children the resources and help they need. to me, being prolife means you support and care for the children inside and outside the womb.

[Delta]

I also agree with the posters who say that there is a huge difference between aborting b/c of gender and aborting b/c of serious (ie, fatal) disorders.Of course there is a difference, but the point is that when you cite 'choice' above all other considerations, the logic leads down the road to them being essentially equal for the purpose of abortion.

I also want to state this disclaimer - I feel abortion is morally and ethically wrong and I am against it. However, after being pregnant 3 times (all high risk) and never feeling so out of control of my own body as I did during those pregnancies due to my high-risk status - especially when it came to my birthing choices - I am fairly uncomfortable with outlawing abortion outright. I just don't think that is really the answer. I would never ever say I am pro-choice, however. I don't know if this makes any sense, but there it is.

I am stating this disclaimer to emphasize that I think there is an important ethical discussion to be had about the degree to which our society is going to put choice above all else. As the article states, it is borderline eugenics. I would say it *is* eugenics when you look at the real world consequences - the dwindling Down syndrome population. Even though, since DS is not a genetic disorder, it's never going to go away completely.

On a personal level, it truly hurts my heart to realize the consequences that such an abortion rate is having on the population of people with Down syndrome. To me, people with Down syndrome are so unique and special, and have so many qualities that we can learn from. I know there are degrees of severity, but even when you have a normal child, nothing is guaranteed.

Perhaps this also gets to me at a personal level because the prenatal diagnosis of a cleft lip and palate also sometimes leads to abortion. To me, that is just ABSURD. Absurd.

[jeggink]

I just wanted to add one piece of information, just because you know your unborn child may have Downs syndrome through testing, you will NOT know until the child is born how severe it will be (other than physical defects seen on the u/s). Downs syndrome can be quite severe or it could be very mild, but as a family you have to make a decision based on the worst condition, not the best. I think is one of the reasons the % may be so high. Just my 2 cents.

[eli1126]

As far as taking statistics with a grain of salt, I'm sure it's 90% of parents who do genetic testing. What we don't know is the % of parents who do genetic testing.

This was my first thought.

[eli1126]

I don't know that this is true. The testing is considered very routine.

I thought that the test for Down's Syndrome was an amniocentesis, which increased the likelihood of miscarriage? I only ask because many of my friends who have had babies decided not to test because of this and that they weren't in a high risk category :confused:

That was my thought with my first post that it may be more likely that the 90% was derived from a much smaller percentage of people who actually do the testing.

[cr8zyforaf]

That was my thought with my first post that it may be more likely that the 90% was derived from a much smaller percentage of people who actually do the testing.

I think this is the case - out of the mom's I know and talk to, the majority of us decided not to test due to the risks and the fact that we weren't in a high risk category.

[kedzieb]

I thought that the test for Down's Syndrome was an amniocentesis, which increased the likelihood of miscarriage? I only ask because many of my friends who have had babies decided not to test because of this and that they weren't in a high risk category :confused:

That was my thought with my first post that it may be more likely that the 90% was derived from a much smaller percentage of people who actually do the testing.

That was my first thought as well. I also think that if we decide to test for DS/genetic disorders whenever I get pregnant, the idea would already be in my mind that if the news was bad enough, we may decide to terminate. So I think other women may go into the testing with the option in mind.

I do wonder if they will ever be able to perfect testing enough for women to make a more informed choice though - severity of disorder, amount of pain the infant may experience, chance of survival. That's the part of this that's especially upsetting aout the choice to abort after getting bad news. Not knowing just how bad the news actually is.

[tenofcups]

If I understand correctly, the test that some people are referring to at 12 weeks with the ultrasounds is only a screening that will tell you what your risk is. It is not a diagnosis, per se, but gives you odds and percentages. It's only a CVS or amnio that can say for sure whether or not the fetus really has Down Syndrome or other chromosonal abnormalities.

I couldn't tell when I read the linked article is that test that they refer to is the same screening test or if there was a new test that I'm not aware of. I suspect it's the screening test, but don't know for sure.

[Asha]

the statistics are derived from studies done from 1980 to 1998. it appears to have been a metanalysis study of some sort, and that is not citing a percentage for the whole population but a sample from the population which can never be completely represantive of an entire population of women. i don't think the ultrasound/blood test prenatal testing for downs was readily available that early on. also, amnio gives a definitive diagnosis, the other gives a risk factor. given this, i think these stats are based on amnio, and i don't think a very high percentage of pregnant women get amnios.

[tenofcups]

the statistics are derived from studies done from 1980 to 1998. it appears to have been a metanalysis study of some sort, and that is not citing a percentage for the whole population but a sample from the population which can never be completely represantive of an entire population of women. i don't think the ultrasound/blood test prenatal testing for downs was readily available that early on. also, amnio gives a definitive diagnosis, the other gives a risk factor. given this, i think these stats are based on amnio, and i don't think a very high percentage of pregnant women get amnios.

Yes, Asha, I think you're right. My post wasn't all that clear. In the linked article, this push to get people to meet with parents seems to be a result of what the article called a new standard test at 12 weeks -- and that's the one that's the screening. I would assume the past stats are based on amnios.

[Sarah]

I am pro-choice, but this bothers me. Dare I say I agree with Delta? It seems that the choice to abort a baby with Downs is one of convenience, not necessity. I would never want to legislate what instances should allow abortion, but I think this is a good discussion about morality to have. Are these parents having abortions to prevent their child from a painful life or do they just not want to change their lives to care for a special needs child?

I don't really understand why some pro-choice people are horrified here.

In my mind, there are two ways to feel about this- either
1. a fetus/zygote/embryo/unborn baby are fully human persons and should never be killed
or
2. a fetus is the possibility of life, or some less important form of life (like an animal to some people, or like a plant, maybe) and we can terminate it if we choose to, for our own reasons, whatever they might be*.

As a person who is prolife if every single situation possible, I am horrified, but if I were prochoice, I wouldn't think this statistic were upsetting- if it's not a person, it's not a person. Terminating (I am trying to use non-charged language here, is this word okay with the pro-choice crew?) this possibility of life or life-potential for the wrong eye color is no more wrong than for life-threatening illnesses or DS, IMO.

*ETA- Not to say that I think women who had abortions are callous about it, or have stupid reasons- I think most women who have abortions probably think long and hard, and it's a very painful and sad choice for them to make, and is probably usually made for altruistic and good-hearted reasons.

[villanelle75]

Since I can't imagine having kids at all, I have no idea what I would do if diagnosed with a child with DS.

That being said, people have abortions all the time for reasons that are absurd to me or absurd to many other people, even pro-choicers. I guess I define "absurd" here as "not something I would ever do and something that I completely don't understand and can't see the logic in."

But I can't say that I find any abortion (that isn't very late term) to be icky or uncomfortable. My pro-choice stance comes largely from my belief that life does not begin at conception and that a fetus is a clump of cells. I know that phrase will inflame some of you, but it is my belief. So I don't think that an abortion is ending a life, therefore, I don't really care what someone choses to have one. DS, sever genetic abnormality, wanted a boy after 5 girls, bad eye color--it doesn't matter to me.

Some of those option seem frivolous, to be sure, and I guess I do scratch my head at someone who has frivolous medical procedures done since there is always a risk. But while I may think someone who has her 7th abortion because she doesn't use BC is frivolous and that it isn't' a wise choice for her health or future reproductive odds, it isn't a moral issue for me.

For me and based on one of the ways I came to my pro-choice beliefs, it would be morally inconsistent for me to have a moral issue with some abortions, but not others. If 7 abortions suddenly made it murder, or if an abortion for the wrong reason was murder, than all abortions would be murder. If you are pro-choice by a different logic than mine, maybe you can condemn one and not the other, but to me, abortion is either wrong, or it isn't. If it's murder, than it isn't okay just this one time or if the fetus is really really sick. To have an abortion, to me, is a choice with no moral implications at all, good or bad, regardless of the situation.

Typically, "eugenics" seems to have connotations of trying to better mankind, and I don't think that applies here since I think families who make the choice to abort for DS don't do so because they want to make the human race stronger, but because they feel they aren't up to the challenges of raising a child with DS. So I don't know that this is eugenics. But it is similar, I guess, if you get right down to it. But then again, in a way, so is looking at a lunar calendar or use the other timing methods that exists, in order to try dictate gender. Choosing the flavor of baby you want is a bit odd to me, no matter how it is done, but again, it isn't a moral issue to me.

For reference, from dictionary.com (bolding mine):
Eugenics:the study of or belief in the possibility of improving the qualities of the human species or a human population, esp. by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics).

[Sarah]

But I can't say that I find any abortion (that isn't very late term) to be icky or uncomfortable. My pro-choice stance comes largely from my belief that life does not begin at conception and that a fetus is a clump of cells. I know that phrase will inflame some of you, but it is my belief. So I don't think that an abortion is ending a life, therefore, I don't really care what someone choses to have one. DS, sever genetic abnormality, wanted a boy after 5 girls, bad eye color--it doesn't matter to me.

Some of those option seem frivolous, to be sure, and I guess I do scratch my head at someone who has frivolous medical procedures done since there is always a risk. But while I may think someone who has her 7th abortion because she doesn't use BC is frivolous and that it isn't' a wise choice for her health or future reproductive odds, it isn't a moral issue for me.

For me and based on one of the ways I came to my pro-choice beliefs, it would be morally inconsistent for me to have a moral issue with some abortions, but not others. If 7 abortions suddenly made it murder, or if an abortion for the wrong reason was murder, than all abortions would be murder.That makes perfect sense to me, and seems to be the only consistent view, IMO (besides mine. :))

[ysolde]

I don't know what I would do, but I do know that I would want to make that decision in consultation with my husband (if I had one), my physicians, and perhaps my religious counselors. It is a private matter, an individual choice, and there should be no madatory anything for anyone.

[ThreeYell]

I thought that the test for Down's Syndrome was an amniocentesis, which increased the likelihood of miscarriage? I only ask because many of my friends who have had babies decided not to test because of this and that they weren't in a high risk category

There are two levels of testing. For most people, you first have a screening test. It used to be the triple or quad screen (blood test) and now it's increasingly the NT scan - a detailed ultrasound at around 12 weeks plus a blood test. This is the routine part and offered to everyone, regardless of age or risk factor. The result it gives you tells you if that particular pregnancy is at a higher than normal risk for certain conditions. BTW, the screening isn't just for Downs. It also tests for spina bifida, which, medically, would be beneficial to know about before delivery.

If the screen comes back "positive" with an increased risk, the next recommended step is amnio. That's the only thing that can give you a definitive yes or no.

As I said before, if my screen had come back positive I would have had amnio, even though I would not terminate. I would want to be prepared. I would want to have already found specialists and educated myself as much as possible before delivery. The first few weeks post-partum are incredibly hard even if you have a perfect baby. I can't imagine having to deal with such an enormous thing and make important decisions in the midst of the hormonal bitch-slap that comes after you give birth.

[Asha]

As a person who is prolife if every single situation possible, I am horrified, but if I were prochoice, I wouldn't think this statistic were upsetting- if it's not a person, it's not a person. Terminating (I am trying to use non-charged language here, is this word okay with the pro-choice crew?) this possibility of life or life-potential for the wrong eye color is no more wrong than for life-threatening illnesses or DS, IMO.

well given this argument that all pro-choicers should logically think of a fetus as a non human entity and that be the only reason for being pro choice, wouldn't exactly hold true here. there are judgment calls made on when to end the lives of animals. it is socially accepted to end the life of a pet with severe illness but not socially acceptable to end the life of a pet bc it is a nuisance bc it makes too much noise. same with pure breeding animals, some people are against it and some people aren't. it really has nothing to do with it being an animal but what is the potential outcomes in the end. it has more to do with just the classification of the being in the womb.

[jajacobsen]

If I understand correctly, the test that some people are referring to at 12 weeks with the ultrasounds is only a screening that will tell you what your risk is. It is not a diagnosis, per se, but gives you odds and percentages. It's only a CVS or amnio that can say for sure whether or not the fetus really has Down Syndrome or other chromosonal abnormalities.

I couldn't tell when I read the linked article is that test that they refer to is the same screening test or if there was a new test that I'm not aware of. I suspect it's the screening test, but don't know for sure.
I disagree. I think the 90% refers to positive results from the amnio, not teh ultrasound.

That would mean they had the screening test (ultrasound), it was positive, and then they went to amnio. I think all OBs would counsel the woman to have the follow up test before an abortion.

ETA: Sorry I got interrupted and delayed posting. I see others had previously made this same point.

[ignutzz]

Taking a different spin on this whole thing:

How will the recent Supreme Court ruling that banning/restricting "late-term" abortions is NOT unconstitutional effect parents who are given a definitive Downs (or any other genetic/chromosomal) diagnosis?

If testing isn't done until mid-2nd trimester, and your state has a ban in place, what do you do??

[MaineBelle]

Just to shed more light on where this 90% statistic comes from. According to the New York Times, the 90% comes from the following journal article published in 1999. I don't have access to the full article, so I'm not sure what percentage of women decided to have the test. However the authors got this number from reveiwing papers published from 1980 to 1998. Considering the nuchal fold test only started in 1995. I speculate that most of the women had an amniocentesis.

Prenat Diagn. 1999 Sep;19(9):808-12.

Termination rates after prenatal diagnosis of Down syndrome, spina bifida,
anencephaly, and Turner and Klinefelter syndromes: a systematic literature
review. European Concerted Action: DADA (Decision-making After the Diagnosis of a fetal Abnormality).

Mansfield C, Hopfer S, Marteau TM.

Psychology and Genetics Research Group, Guy's, King's and St Thomas' Medical School (King's College), London, UK.

The aims of this systematic literature review are to estimate termination rates
after prenatal diagnosis of one of five conditions: Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes, and to determine the extent to which rates vary across conditions and with year of publication. Papers were ncluded if they reported (i) numbers of prenatally diagnosed conditions that were terminated, (ii) at least five cases diagnosed with one of the five specified conditions, and (iii) were published between 1980 and 1998. 20 papers were found which met the inclusion criteria. Termination rates varied across conditions. They were highest following a prenatal diagnosis of Down syndrome (92 per cent; CI: 91 per cent to 93 per cent) and lowest following diagnosis of Klinefelter syndrome (58 per cent; CI: 50 per cent to 66 per cent). Where comparisons could be made, termination rates were similar in the 1990s to those reported in the 1980s.

[Sarah]

well given this argument that all pro-choicers should logically think of a fetus as a non human entity and that be the only reason for being pro choice, wouldn't exactly hold true here. there are judgment calls made on when to end the lives of animals. it is socially accepted to end the life of a pet with severe illness but not socially acceptable to end the life of a pet bc it is a nuisance bc it makes too much noise. same with pure breeding animals, some people are against it and some people aren't. it really has nothing to do with it being an animal but what is the potential outcomes in the end. it has more to do with just the classification of the being in the womb.
Yes, that was my point! I was just comparing it to an animal or plant not because I think you think they are the same, but to illustrate that to most pro-choicers, it's a life (as is an animal or plant) to be given consideration and weight as such, but not over humans. Most people see animals the same way- to be given consideration and good treatment, but not over humans. If you see the fetus as this, then it's really a personal judgment call, but not a moral one. If you see it as a person, then it's always wrong. Abortion cannot be wrong in some circumstances and not in others, IMO.

[Sarah]

If testing isn't done until mid-2nd trimester, and your state has a ban in place, what do you do?? Was this rhetorical? Because there is adoption. I believe Delta posted a link a while ago to an article about there being a waiting list for DS babies.

Or you could go to another state (of course, not an option for all).

Or you could keep the baby.

[jajacobsen]

Let's think about something else. We're all talking about the burden of raising the child on the family. What about the burden on the child? Ids taht fair to bring a child into the world knowing it will be disadvantged, possibly severely? What happens when the child is an adult? Society is a cruel, cruel world and people are not as accepting as we might see in a a Lifetime movie.

What happens if the D/S is severe, and the child, now adult is never able to care for itself completely? What happens when the parent(s) die? Is it fair to commit your child to potentially being a ward of the state? Few people can really be sure that they could leave their special needs child enough money to be independently wealthy with both caretakers and money managers? What hapens if and when these people rip the special needs person off?

State homes for the developmentally disadvantaged are grim places. The risks are too great. I am thinking about the quality of life for the child, especially when it reaches adulthood. So I think every family has to make a choice and everyone else shoudl let them make their own choices.

And no, I am sorry, eye color and geneder selection are COMPLETELY different. Shame on anyone for suggesting they are the same. Ask a D/S parent or child of they are the same. Or better yet, if you feel so very strongly about thsi subject, volunteer for free, in a hospice/respite service to help those families with a D/S child. I mean you clearly think they made the only right choice, so are you (general you) morally obligated to provide community support?

I know I am a soap box here but it irks me when peopel hypothecate or spout off about what is right or wrong about very serious issues in other people's lives, safely knowing that they likely will never be affected.

[ysolde]

Was this rhetorical? Because there is adoption. I believe Delta posted a link a while ago to an article about there being a waiting list for DS babies.

Or you could go to another state (of course, not an option for all).

Or you could keep the baby.

I doubt there is a waiting list for severe DS babies (but I could be wrong). I know there are many, many children available for adoption in NYS, and they are languishing in foster care, because they are not white, older, and have psychological problems and/or chronic illnesses.

And I doubt a woman who wants an abortion is likely to keep a baby.

[cari2]

Ignutzz - CVS testing is done around 11 weeks and amnio at around 16 weeks, so theoretically if your state has a ban you would still have time to abort if desired...

[Rico'sAlice]

If you see it as a person, then it's always wrong. Abortion cannot be wrong in some circumstances and not in others, IMO.

I think it is possible to consider a fetus fully a person and still think there are some circumstances where abortion is acceptable. Basically along the lines of justifiable homocide (for lack of a better term.) Some people could feel abortion is "murder" but that when done in "self-defense" to save the life of the mother it is justifiable, same way with already born humans. [Not my position, but seems like a possibility.]

[villanelle75]

And no, I am sorry, eye color and geneder selection are COMPLETELY different. Shame on anyone for suggesting they are the same. Ask a D/S parent or child of they are the same. Or better yet, if you feel so very strongly about thsi subject, volunteer for free, in a hospice/respite service to help those families with a D/S child. I mean you clearly think they made the only right choice, so are you (general you) morally obligated to provide community support?


I don't think anyone has suggested that having a baby with an eye color you didn't prefer is the same as having a child with D/S. What I've taken from what I've read is that for some, the moral implications of aborting for eye color are the same as those of aborting for D/S or anything else. That isn't to equate the two conditions; it simply suggests that either you think a fetus is a human being and therefore abortion is murder, no matter what the reason, or you think a fetus is not a human being so it morals don't come in to play when deciding whether to abort, regardless of cause.

Reasonable people can disagree with that, depending on their rational for being pro-choice, but in the discussions about eye color, that's been the vibe I've taken away.

[jajacobsen]

I don't think anyone has suggested that having a baby with an eye color you didn't prefer is the same as having a child with D/S. What I've taken from what I've read is that for some, the moral implications of aborting for eye color are the same as those of aborting for D/S or anything else. That isn't to equate the two conditions; it simply suggests that either you think a fetus is a human being and therefore abortion is murder, no matter what the reason, or you think a fetus is not a human being so it morals don't come in to play when deciding whether to abort, regardless of cause.

Reasonable people can disagree with that, depending on their rational for being pro-choice, but in the discussions about eye color, that's been the vibe I've taken away.


But what Iam saying is that several posts (11, 12, 13 and 40 - sorry I cannot figure how to multiple quote for the life of me) are likening terminating a D/S pregnancy to terminating for reasons of eye color, gender, etc.

It's not the same. AT ALL. It's like saying to a D/S parent " Yeah, I'm sorry that your baby has D/S. I really wanted my child to have blue eyes but I didn't get those either. Sometimes life is just not fair but i guess you have to deal with it as it comes. I guess we'll just have to hope for teh best"

It's not that simple.

[bookworm]

I think there is a valid middle ground between "a fetus a person and must be proctected at all costs" and "a fetus is something else, I don't care what happens to it."

I'm not sure a termination is a medical procedure with no moral implications. It could be that somewhere along the line between conception and actually being born, a fetus becomes a person...and in the absence knowing when exactly that happens, I can't make the decision for anyone else.

But in the absence of knowing, I can also think it's not a great choice.

And I think a person's right to control her own body is a fundamental human right, and if she doesn't want to continue to nuture a fetus... that's her decision. I can't compel a person to take care of another, and without being able to say "ok, if you won't take care of them, I will," there isn't much I can do. The ending of a life/potential life seems to be a consequence of the decision, rather than it being the decision itself. Maybe that's semantics, but in my mind there is a difference.

There are certainly ways to entice women to continue pregnancies...the group mentioned in the article is one way (though I agree that they probably represent the "better case scenario" of life with a child who has DS). We could offer more community support (financial, emotional, more experienced care givers).

I'm ambivalent about genetic testing in general. A baby could be born healthy, then (G-d forbid) have an accident that results in severe developmental delays. I don't know what I would do (though from the comfortable position of not having had to think about it much, I suspect I'd continue)...and it's so personal I really don't want to make that decision for someone else.

[Delta]

Was this rhetorical? Because there is adoption. I believe Delta posted a link a while ago to an article about there being a waiting list for DS babies.I did? I don't remember. At any rate, according to George Will, whose article is linked in that NYT article and whose son has DS, there is a waiting list of 214 people.

And no, I am sorry, eye color and geneder selection are COMPLETELY different. Shame on anyone for suggesting they are the same. Ask a D/S parent or child of they are the same. That's not what we are saying. They are not the same. However, my point was this - if we (general we) are going to bow at the altar of choice and say that we cannot judge any person's reason for having an abortion even if the reason is morally or ethically wrong to us because to believe in choice is to believe in choice, period, then what we are essentially doing is accepting that any abortion for any reason is justifiable, whether that be for some sort of chromosomal disorder or for eye color. Does this make sense?

And my point in making that point is that I think there is room (or I would hope, at least) for discussion about the ethics of abortion for reasons such as Down syndrome, etc., outside the realm of religion or politics or what have you. Is the notion of all-encompassing 'choice' so important that we are willing to make that bargain? Is it not disturbing to anyone else that there is actually a noticable decline in the DS population because of abortion?

[jennylou]

Taking a different spin on this whole thing:

How will the recent Supreme Court ruling that banning/restricting "late-term" abortions is NOT unconstitutional effect parents who are given a definitive Downs (or any other genetic/chromosomal) diagnosis?

If testing isn't done until mid-2nd trimester, and your state has a ban in place, what do you do??

The actual late term abortion was struck down by the SC. However, you can still have your labor induced and go through that process before the baby has a chance at living outside the womb.

[Asha]

Is it not disturbing to anyone else that there is actually a noticable decline in the DS population because of abortion?

it may be the cause for the decline, though it may not be. there probably is a correlation btwn the two, but correlation is not proof of causation.

[ysolde]

I am not sure why there has been a decline in the DS population. It may be due to abortion, it may be sue to better health in women in general, long before they are pregnant. Who knows?

[Rico'sAlice]

Let's think about something else. We're all talking about the burden of raising the child on the family. What about the burden on the child? Ids taht fair to bring a child into the world knowing it will be disadvantged, possibly severely? What happens when the child is an adult? Society is a cruel, cruel world and people are not as accepting as we might see in a a Lifetime movie.

What happens if the D/S is severe, and the child, now adult is never able to care for itself completely? What happens when the parent(s) die? Is it fair to commit your child to potentially being a ward of the state? Few people can really be sure that they could leave their special needs child enough money to be independently wealthy with both caretakers and money managers? What hapens if and when these people rip the special needs person off?

State homes for the developmentally disadvantaged are grim places. The risks are too great. I am thinking about the quality of life for the child, especially when it reaches adulthood. So I think every family has to make a choice and everyone else shoudl let them make their own choices.

And no, I am sorry, eye color and geneder selection are COMPLETELY different. Shame on anyone for suggesting they are the same. Ask a D/S parent or child of they are the same. Or better yet, if you feel so very strongly about thsi subject, volunteer for free, in a hospice/respite service to help those families with a D/S child. I mean you clearly think they made the only right choice, so are you (general you) morally obligated to provide community support?

I know I am a soap box here but it irks me when peopel hypothecate or spout off about what is right or wrong about very serious issues in other people's lives, safely knowing that they likely will never be affected.

As someone who actually does live and work with adults with DS (among other conditions) maybe I am allowed to hypothecate. ?
Anyway, I'm not sure how one might define "severely" but these are people who have absolutely no chance of ever living independently. Pretty much constant care and supervision. Help with toileting, etc. Despite that, there is not a single one of them that has what anyone could reasonably term a "poor quality of life."

Were some of them subjected to cruel comments from other children? Probably. But that happens based on a million different basis- needing glasses, having different-race parents, being short, being tall, being fat, being skinny, being "too" smart," being not smart enough, etc. etc. I don't think that being subjected to ridicule in school is a reasonable basis on which to determine if a person's life is worthwhile.

There are absolutely challenges and sadnesses.
One of my friends w/ DS is now in the beginning stages of Alzheimer's at a relatively young age (50's), as people with DS are at an increased risk for. His behavior is becoming increasingly difficult to deal with for those who live with him. But he is still able to spend the majority of his day in reasonably good spirits, doing the things that make him happy, surrounded by people who love him.

As for the technical aspects,
If you do have money, setting up a irrevocable trust to provide for your child's future can be done in such a way that it is protected from any one person cheating the child. You can build in various conditions, checks and balances, etc.

In addition, getting state funding, services, and other help does not require that an individual become a ward of the state. Parents need to set up a will and appoint someone they trust to be the individual's guardian after their passing if the individual is not capable as functioning at that level on their own behalf. Then that person works with the state in finding an appropriate placement and funding for that.
I'll grant you, this can be a PIA. But with some advance planning, this can be done without too much grief.

I also find this statement "State homes for the developmentally disadvantaged are grim places." overly broad. The community I work in may be exceptional on one end of the scale (being a family-based Lifesharing model) but I think your implications of the conditions in state homes go too far in the other direction. IME, most are somewhere in the middle and at this point pretty decent. Yes, there may be a bit too much TV watching for my tastes, but most have some sort of day program built around the individual's abilities, needs, and desires. Evenings provide opportunities for socialization, relaxation time, etc. The disgusting large institution systems have been largely been done away with or are being dismantled and transitioned now. Of course, different states have different situations than others.


Look, I'm not mentioning all this to say that there aren't added challenges that come with DS for the individual and their family. And sometimes situations do to turn out terribly! I know it's not all smelling the roses and happy days winning medals at Special Olympics. I just found the bleak picture painted in the post to be so pessimistic and depressing that I wanted to offer up some alternatives.



BTW- Anyone ever read "Expecting Adam."? It is an incredible book about a Harvard Prof. who is pregnant with a baby w/ DS and goes against expected protocol in her circle by choosing to keep him. It then goes on to detail their lives together.

[jajacobsen]

.

That's not what we are saying. They are not the same. However, my point was this - if we (general we) are going to bow at the altar of choice and say that we cannot judge any person's reason for having an abortion even if the reason is morally or ethically wrong to us because to believe in choice is to believe in choice, period, then what we are essentially doing is accepting that any abortion for any reason is justifiable, whether that be for some sort of chromosomal disorder or for eye color. Does this make sense?

And my point in making that point is that I think there is room (or I would hope, at least) for discussion about the ethics of abortion for reasons such as Down syndrome, etc., outside the realm of religion or politics or what have you. Is the notion of all-encompassing 'choice' so important that we are willing to make that bargain? Is it not disturbing to anyone else that there is actually a noticable decline in the DS population because of abortion?

Yes but i am saying there is a HUGE distinction between eye color and Down's Syndrome. To abort based upon one factor is morally reprehensible and to abort based upon teh other is, dare i say it, possibly even doing teh responsible, kinder thing.

I think a lot of people here are really glamorizing what having a DS child is like. If you are George Will with nannies and helpers and lots of money, I guess it is okay. But what if you were a single mom? What is the reality of being able to afford daycare? Can you really provide for the child?

I am pro-choice but not pro-abortion. Abortion is terrible. Sometimes the alternativs are terrible, too. Having the wrong eye color or gender is not terrible.


No,I am not disturbed that there has been a decline in the D/S population, possibly due to abortion. I am glad parents can make informed choices.

[amew]

It seems intuitively likely to me that the decline in people with DS must be largely a result of abortion, especially when you consider that one would expect the rate of DS to be going up in light of the increase in birth age of women in recent decades. Increased access to screening and diagnostic testing and subsequent access to abortion seems to be the one major factor that could cause a decrease in DS. General good health doesn't significantly reduce the incidence of a chromosomal disorder like DS, does it?

That said, for those with concerns about the decline the DS population, is it really the decline that is bothersome, or the reason for the decline? Meaning, if DS could be "cured," would you still be bothered by the eradication of the condition? Just curious from a theoretical standpoint whether people are saying "there is an inherent value in having people with DS in the world and therefore DS should not be eradicated no matter what, regardless of the means used" or whether it is about the distaste of eradicating a segment of the population through abortion in a way that, admittedly, smacks of eugenics.

[jajacobsen]

As someone who actually does live and work with adults with DS (among other conditions) maybe I am allowed to hypothecate. ?
Anyway, I'm not sure how one might define "severely" but these are people who have absolutely no chance of ever living independently. Pretty much constant care and supervision. Help with toileting, etc. Despite that, there is not a single one of them that has what anyone could reasonably term a "poor quality of life."

Were some of them subjected to cruel comments from other children? Probably. But that happens based on a million different basis- needing glasses, having different-race parents, being short, being tall, being fat, being skinny, being "too" smart," being not smart enough, etc. etc. I don't think that being subjected to ridicule in school is a reasonable basis on which to determine if a person's life is worthwhile.

There are absolutely challenges and sadnesses.
One of my friends w/ DS is now in the beginning stages of Alzheimer's at a relatively young age (50's), as people with DS are at an increased risk for. His behavior is becoming increasingly difficult to deal with for those who live with him. But he is still able to spend the majority of his day in reasonably good spirits, doing the things that make him happy, surrounded by people who love him.

As for the technical aspects,
If you do have money, setting up a irrevocable trust to provide for your child's future can be done in such a way that it is protected from any one person cheating the child. You can build in various conditions, checks and balances, etc.

In addition, getting state funding, services, and other help does not require that an individual become a ward of the state. Parents need to set up a will and appoint someone they trust to be the individual's guardian after their passing if the individual is not capable as functioning at that level on their own behalf. Then that person works with the state in finding an appropriate placement and funding for that.
I'll grant you, this can be a PIA. But with some advance planning, this can be done without too much grief.

I also find this statement "State homes for the developmentally disadvantaged are grim places." overly broad. The community I work in may be exceptional on one end of the scale (being a family-based Lifesharing model) but I think your implications of the conditions in state homes go too far in the other direction. IME, most are somewhere in the middle and at this point pretty decent. Yes, there may be a bit too much TV watching for my tastes, but most have some sort of day program built around the individual's abilities, needs, and desires. Evenings provide opportunities for socialization, relaxation time, etc. The disgusting large institution systems have been largely been done away with or are being dismantled and transitioned now. Of course, different states have different situations than others.


Look, I'm not mentioning all this to say that there aren't added challenges that come with DS for the individual and their family. And sometimes situations do to turn out terribly! I know it's not all smelling the roses and happy days winning medals at Special Olympics. I just found the bleak picture painted in the post to be so pessimistic and depressing that I wanted to offer up some alternatives.



BTW- Anyone ever read "Expecting Adam."? It is an incredible book about a Harvard Prof. who is pregnant with a baby w/ DS and goes against expected protocol in her circle by choosing to keep him. It then goes on to detail their lives together.

Wonderful for you and wonderful for the writer. I'm not saying any of these things are wrong. I am glad you can work in a positive environment. I stand by my opinions of many state run homes for the developmentally disabled.

It's great that you and teh writer have made teh choice sin your lives to work with or live with teh devlopmentally disabled. These were your choices. However, I think all parents derve the right to make their own informed choices.

ETA - I note you live in an area which is both one of the wealthier areas of the US and an are awhich is strong on social programs politically. Please do not assume that these conditions prevail everywhere. I truly shocked by the terrible way in which many homes for the old, sick an disabled are allowed to exist, both in aand out of institutions. But that is another debate!

[fuzzy]

A couple of random thoughts...

bookworm, you've pretty much articulated my thoughts exactly. I think there is a middle ground, or at least a gray area. It isn't cut and dry in my mind.

Is it not disturbing to anyone else that there is actually a noticable decline in the DS population because of abortion?

Yes, assuming it's related to abortions, I'm disturbed. But, to me the primary issue isn't bowing down to the alter of choice, although I do believe that bookworm (again) got it right: And I think a person's right to control her own body is a fundamental human right, and if she doesn't want to continue to nuture a fetus... that's her decision. The primary issue *for me* is this odd perception of what life is like for someone with different abilities. jajacobsen's post expressed these types of sentiments (and I'm not picking on you specifically or making a personal attack, just using it as an example).

Granted, I grew up with disabilities. Having an abnormal family is normal for me. But really? It isn't a big deal. Sure, there are cases with extenuating circumstances. But *most* of the time, it's really not that big of a deal. Honest. I know TONS of these people. They all live happy lives, albeit with some differences. I just can't wrap my head around what people are afraid of, what is so terrifiying about the whole situation that someone would go and have an abortion? We've actually found that the world has been pretty damn great. That people want to help. That most people are kind and caring and do what they can to be that village that maybe some parents need when they have a child with different abilities. My parents are lower middle class. They planned carefully and thought ahead. My brother will never, ever be a ward of the state, even if I get hit by a bus tomorrow.

(Sorry, I cross-posted with Rico's Alice.)

[ignutzz]

Was this rhetorical? Because there is adoption. I believe Delta posted a link a while ago to an article about there being a waiting list for DS babies.
No, it was not rhetorical, is was me not fully explaining where my train of thought was going. Basically, what I was trying to say was that the ethical argument had the potential to be null and void since the parents may not even have the option of abortion available to them.

Ignutzz - CVS testing is done around 11 weeks and amnio at around 16 weeks, so theoretically if your state has a ban you would still have time to abort if desired...
There is NO definitive declaration of what constitutes late-term. Therefore, if you had an amnio at 16wks, it may be considered late-term, and if it isn't the fetus may (most likely WILL be) be at the point of development where D&C is not possible. If your state then has a ban on "late-term" abortion procedures, like D&E or IDX, you're in a difficult position with regards to options (ETA: Options IF what you wanted was an abortion).

The actual late term abortion was struck down by the SC. However, you can still have your labor induced and go through that process before the baby has a chance at living outside the womb.
Ah yes, I usually forget about this option. I still think this topic shows the direct effect the Court's ruling has on medical decisions.

[diam124]

I know I am a soap box here but it irks me when peopel hypothecate or spout off about what is right or wrong about very serious issues in other people's lives, safely knowing that they likely will never be affected.

I don't understand this criticism at all. How do any of us know that we will not be affected by Downs Syndrome or any other genetic issue in the future? I think most people on here have very strong beliefs as to what they feel is right or wrong. Why is that a bad thing?

[jesvet]

Yes but i am saying there is a HUGE distinction between eye color and Down's Syndrome. To abort based upon one factor is morally reprehensible and to abort based upon teh other is, dare i say it, possibly even doing teh responsible, kinder thing.

I think a lot of people here are really glamorizing what having a DS child is like. If you are George Will with nannies and helpers and lots of money, I guess it is okay. But what if you were a single mom? What is the reality of being able to afford daycare? Can you really provide for the child?

I am pro-choice but not pro-abortion. Abortion is terrible. Sometimes the alternativs are terrible, too. Having the wrong eye color or gender is not terrible.


No,I am not disturbed that there has been a decline in the D/S population, possibly due to abortion. I am glad parents can make informed choices.

I agree with you, jajacobsen. A very long time ago, I used to think, how could anyone even consider such a thing? But then reality set it...for me, that is. I do not honestly know how I would do in the face of that circumstance. I do not think I would do well. If I had no choice, I would deal- but if I were put in that position, of having a choice- I can't tell you what I would do as I would need to do a hell of a lot of soul searching, but I would be grateful for the option to choose.

By allowing choice, yes, we do open the door for people to say they want an abortion because (insert reason from justifiable to absurd.) That is the price we pay. I think society as a whole exerts some measure of control over that in general, what choices are deemed "socially acceptable" and perhaps ethically acceptable, but in the end there will be people out there who choose abortion for what most of us feel is the wrong reason. I remember an article, and I have no idea where I read it, about a doctor whose patient wanted to terminate because her fetus had 6 fingers. He could not dissuade her, and it was very hard for him, but in the end, it was her choice. And if the alternative is removing all choice, then I am willing to accept that price.

[amew]

I remember an article, and I have no idea where I read it, about a doctor whose patient wanted to terminate because her fetus had 6 fingers. He could not dissuade her, and it was very hard for him, but in the end, it was her choice. And if the alternative is removing all choice, then I am willing to accept that price.

I remember that article, and I was very disturbed by that example, but ultimately I agree with you.

[ysolde]

fuzzy --

I gotta tell you, having lived with a disability all my life, my experience has been completely different. Money made me less disabled, and that was the bottom line. It bought me better medical care, when the doctors back home insisted there was nothing wrong with me. It bought me surgeries as a toddler and child that allowed me to walk. It bought me months of rehabilitation after each surgery. It bought me a complete education in private schools, where my disability was never an issue, so there was never a "Special Ed" stigma on me.

It bought my mother the ability to be a SAHM, and take care of me during my childhood. It bought membership to a country club where I learned to swim in private beaches and pools. It bought the number one asset: accessibility. In a world that was highly inaccessible, accessibility was the greatest prize.

I learned the lesson at an early age, and continue to live my life in a place that is entirely accessible, and use what I earn to buy physical accessibility.

I cannot imagine what my life would have been like if my parents had not been able to get on a plane to go to Boston for medical care for me, if my mother had had to work, if I had not been able to go to school where I did. Life with a disability gets expensive really quickly, at least in my experience, and independence comes at a price.

[jajacobsen]

fuzzy - I am really, really glad for your brother that he will be loved, cared for and should live a happy life. I in no way believe that all persons with developmental disabilities will lead grim lives. Clearly tehre are many people out there who are able to properly care for such children. And so they do. They are not whom I am concerned.

For several years I had teh pleasure of auditing federal garnt programs. Part of doing this was included a visit whatever facility and a review of case files. Additionally, I would have to do site inspections. To homeless shelyters, public housing projects, and state run nursing homes and like facilities. Yeah, sometimes I got to go fun laces like the childrens library, but often I went not so fun places. Places which I really don't care to remember and places for which I will always vote for any tax increase for social programs. (And I'm a finance person and it made a liberal out of me!)

I don't think this is the life experience of all persons with developmental disabilities. But I KNOW it is for many.


The stories would break your heart. And these were only the people "in the system." I wondered about those not receiving any guidance or oversight.


Not every parent can properly raise a child with severe developmental disabilities. Not every parent can provide for their needs after their own deaths. If you can, and thd situation arises for you, that is truly wonderful! But I do not think it is fair to judge, or take away options from parents who make other choices. That's what I am really saying here.

[Rico'sAlice]

ETA - I note you live in an area which is both one of the wealthier areas of the US and an are awhich is strong on social programs politically. Please do not assume that these conditions prevail everywhere. I truly shocked by the terrible way in which many homes for the old, sick an disabled are allowed to exist, both in aand out of institutions. But that is another debate!

And please do not assume that I don't have experience with the system in other areas of the country. :)
As I said states vary. Of course, its not like any of have know the conditions of every place, every where. But I have a good deal of familiarity either through direct experience or through friends and family with the systems in terms of what type of living situations are available and in getting funding and other services provided, in Florida, Lousianna, Maryland, California, New York, Pennsylvania, New Jersey, Wisconsin, and New Hampshire. And the picture in NY is absolutely different than in Louisiana. And again, I acknowledged that there ARE still some places in operation that do not provide humane living conditions. Finding actual statistics on the "average" condition, percentages of each type, etc. is probably not a reasonable possibility.
So, I'll still I stand by my assertion that- "State homes for the developmentally disadvantaged are grim places." is an overly broad statement. :)

I was not really looking to convince you personally (jajajacobsen) of anything. (Does anyone ever manage that on a message board?:) ) As I said, I just wanted it to be clear that despite the existence of bad situations there are good options and possibilities out there.
However, that is probably as far as we're gonna get on that aspect of this topic and I have to go pick my mom up.

[fuzzy]

I gotta tell you, having lived with a disability all my life, my experience has been completely different.

Fair enough. Please don't think I don't realize that every person's situation is different, particularly when we are talking mental vs. physical disabilities (but yes, I realize that people with Down's often have physical issues that need medical care). I suppose I just bristle at people's perceptions that life with a disability immediately equates to misery. A lot of people say they realize this, but when they ask me about my brother, you can read between the lines and know that in their head they are thinking his life -- and by some extension, his family's life -- is some how lessen in some way. I don't think it has been at all.

jajacobsen -- I hear you, I really do. I worked in a county-run nursing home for a long time and saw similar things. I don't mean to sound cavalier about the whole issue. And, again, I support a woman's right to choose. I guess I'm always surprised when I lurk in thread that discuss termination and people automatically assume the worst case senario -- like there's no other possible outcome or something like that. I don't know if that makes any sense or not...

[jajacobsen]

fuzzy --

I gotta tell you, having lived with a disability all my life, my experience has been completely different. Money made me less disabled, and that was the bottom line. It bought me better medical care, when the doctors back home insisted there was nothing wrong with me. It bought me surgeries as a toddler and child that allowed me to walk. It bought me months of rehabilitation after each surgery. It bought me a complete education in private schools, where my disability was never an issue, so there was never a "Special Ed" stigma on me.

It bought my mother the ability to be a SAHM, and take care of me during my childhood. It bought membership to a country club where I learned to swim in private beaches and pools. It bought the number one asset: accessibility. In a world that was highly inaccessible, accessibility was the greatest prize.

I learned the lesson at an early age, and continue to live my life in a place that is entirely accessible, and use what I earn to buy physical accessibility.

I cannot imagine what my life would have been like if my parents had not been able to get on a plane to go to Boston for medical care for me, if my mother had had to work, if I had not been able to go to school where I did. Life with a disability gets expensive really quickly, at least in my experience, and independence comes at a price.

I think this is so true. I am glad your parents could provide these advantages for you.

[kedzieb]

I agree with you, jajacobsen. A very long time ago, I used to think, how could anyone even consider such a thing? But then reality set it...for me, that is. I do not honestly know how I would do in the face of that circumstance. I do not think I would do well. If I had no choice, I would deal- but if I were put in that position, of having a choice- I can't tell you what I would do as I would need to do a hell of a lot of soul searching, but I would be grateful for the option to choose.

By allowing choice, yes, we do open the door for people to say they want an abortion because (insert reason from justifiable to absurd.) That is the price we pay. I think society as a whole exerts some measure of control over that in general, what choices are deemed "socially acceptable" and perhaps ethically acceptable, but in the end there will be people out there who choose abortion for what most of us feel is the wrong reason. I remember an article, and I have no idea where I read it, about a doctor whose patient wanted to terminate because her fetus had 6 fingers. He could not dissuade her, and it was very hard for him, but in the end, it was her choice. And if the alternative is removing all choice, then I am willing to accept that price.


ITA with your post. Having choice makes life a lot more complicated, but a lot more yours.

[dionysia]

Well said, jesvet.

Fuzzy:
"I guess I'm always surprised when I lurk in thread that discuss termination and people automatically assume the worst case scenario -- like there's no other possible outcome or something like that."

I think it's a tough decision because of the unknown. Yes, the baby could have very mild Down's, very severe, or somewhere in between. And it won't necessarily be apparent at birth. So there's an element of having to make a choice of 'blind faith,' if you will.

Di

[jajacobsen]

Rico's Alice and Fuzzy - I agree that many people with developmental and physical differences have great lives. I have never said thay they did not. What what does concern me is taht our society ofetn does not provide so well for the weaker or less abled.

It's just the ones with the not so great lives that concern me. The ones that are doing fine - great - get one with it. But then there are others. And if we have a way of possibly preventing some of this, it is irresponsible (IMO) to not make it available. Not as the only choice. But as a choice.

Fuzzy - I want to be a child and live in your hometown!. It sounds like Mayberry! Sadly, I did not grow up in Mayberry.

Rico's Alice. I live in GA. I'm sure there is good care here - I just haven't seen any of it yet. But then, I didn't audit private care facilities unless they were major recipeints under a federal grant program. Georgia is progressive in many ways - educational funding for example. But honestly, housing and care for the poor and disabled here just sucks.

[kedzieb]

I'm also wondering where the outrage stems from on the part of people who are concerned that the amount of people with DS has declined. Is it the means (if we can assume that abortion is the reason for the decline) or the result? Because to me, if the rate of people born with DS was increasing, I think most people would consider that a problem & not something to celebrate. So I'm admitting to having a hard time understanding the parents in the original post who are trying to counsel pregnant women to carry DS fetuses to term. If they are pro-life then they should be arguing for all women to carry all fetuses to term.

I also have a hard time understanding the community of deaf people who are opposed to the cochlear implant surgery that gives hearing to deaf children. It's not that being deaf or having DS is the worst thing in the world, but it's still harder than having hearing or not having DS.

[dionysia]

Kedzieb,

I think that some people believe that having DS or being deaf or (insert any physical/mental challenge here) is a gift, so to speak. That these conditions are to be dealt with and celebrated almost. Ok, maybe not the conditions themselves, but the people who have them?

Ugh, I'm not expressing myself well.

Di

[Delta]

I'm also wondering where the outrage stems from on the part of people who are concerned that the amount of people with DS has declined. Is it the means (if we can assume that abortion is the reason for the decline) or the result? Because to me, if the rate of people born with DS was increasing, I think most people would consider that a problem & not something to celebrate. So I'm admitting to having a hard time understanding the parents in the original post who are trying to counsel pregnant women to carry DS fetuses to term. If they are pro-life then they should be arguing for all women to carry all fetuses to term.
It's not outrage, it's more that I'm creeped out by the fact that the population is declining enough that those who are in the DS community feel compelled to speak out about it. I suppose I just find it surprising that DS seems to be such an abortion-worthy diagnosis. I really had no idea. And I could be wrong, but I don't think the article mentions whether these parents are prochoice or prolife.

[kedzieb]

Kedzieb,

I think that some people believe that having DS or being deaf or (insert any physical/mental challenge here) is a gift, so to speak. That these conditions are to be dealt with and celebrated almost. Ok, maybe not the conditions themselves, but the people who have them?

Ugh, I'm not expressing myself well.

Di


I guess that's possible, but I wonder how far that extends. I think there's a difference between making the best of a situation and loving your child no matter what and actively promoting (wrong word?) deafness or having DS as a positive thing. I have a hard time wrapping my head around the latter.

Kristin

[Delta]

I guess that's possible, but I wonder how far that extends. I think there's a difference between making the best of a situation and loving your child no matter what and actively promoting (wrong word?) deafness or having DS as a positive thing. I have a hard time wrapping my head around the latter.For example, I almost responded to your post earlier that made mention of the 'bad news' that you get when you find out your child has DS. I don't really look at it that way. I'm not saying it's wrong to be upset if you find out your child has DS, but I don't think it's necessarily such a devastating thing either.

[LyLMyssChaos]

Wow.

This thread just completely breaks my heart. I just am at a complete loss for words.

[msnicolea]

I actually share Delta's surprise that DS is a diagnosis that would lead people to consider an abortion they otherwise wouldn't have. I mean, from the little experience I have had with children with DS, they seemed to be pretty happy, loving children, who weren't in any physical pain. Obviously, I support Choice, but I find this a bit perplexing.

[dionysia]

N-

From http://www.kidshealth.org/parent/medical/genetic/down_syndrome.html

Medical Problems Associated with Down Syndrome

While some kids with DS have no other health problems, others may experience a host of medical issues that require extra care. For example, half of all children born with DS also have congenital heart defects and are prone to developing pulmonary hypertension (high blood pressure in the lungs). A pediatric cardiologist can monitor these types of problems, many of which can be treated with medication or surgery.

Approximately half of all kids with DS also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself. Vision problems commonly include amblyopia (lazy eye), near- or farsightedness, and an increased risk of cataracts. Regular evaluations by an audiologist and an ophthalmologist are necessary to detect and correct any problems before they affect a child's language and learning skills.

Other medical conditions that may occur more frequently in children with DS include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia. Fortunately, many of these conditions are treatable.

Di

[msnicolea]

TY, Di--I wasn't aware of the additional issues!

[dionysia]

No problem.

As a disclaimer, I was providing such information factually, not to make a point one way or another about the severity/mildness of such health conditions.

Di

[AlisonCO]

Wow, 90% is very shocking to me. I don't even know where to begin with how I feel about this so I will just ramble away. I am 100% pro-choice, no questions asked, but this certainly makes me sad. My brother has Down's - he is 28 and back in the late 70's/early 80's there were no routine tests for this so my parents had no idea. I would not for one second trade the experience of growing up with a sibling that has a disability - it has absolutely shaped how I live my life. I am so very thankful everyday that my kids will grow up with my brother around so that to can benefit from the experience. I hope that when they are in school that there are kids with disabilities in their classrooms. That being said, this is a huge burden for my parents. Burden is such a negative word, but it is the best I could come up with. My parents are quite young - just in their very early 60's. My dad is semi-retired and my mom works here and there. When someone asks my mom what she does she replies "I manage Rich's life" and that is what she does. My brother is extremely high functioning - he has a form of Down's where not all of his chromosome #21s are effected with the trisomy, some are normal (actually he has about 60% "normal".) He can read at a high school level, do basic math, balance a checkbook etc. At some point he would definetely like to live on his own, but it would require alot of help. He works, volunteers and play sports and my mom is the chauffer becasue there just is not enough funding for transportation and we have no public transportation here. They have to apply 1 year ahead to get respite care for when they want to go away. My sister and I do what we can, but sometimes we just can't keep up the life he leads on a weekly basis when my parents are gone. He is so very lucky in that my parents are financially well off and my grandparents have both given him money monthly so he is loaded:) Unlike so many he can go the dentist when he needs to - this is not covered by medicaid/medicare. My parents will never really get to retire - they will always have to be around. If my parents were to die, my sister and I would probably share the respondsibilty (he will never go into a group home as long as one of us is living) but it is a scary though for both of us - me with a family if my own and my sister who is single.

So I guess I am trying to say that it does sadden me that so many people would choose to abort a baby with DS just for that reason and I definetely see the slippery slope here but I also live the reality of seeing a person with DS grow up and what it takes emotionally and financially to support them.

[kedzieb]

For example, I almost responded to your post earlier that made mention of the 'bad news' that you get when you find out your child has DS. I don't really look at it that way. I'm not saying it's wrong to be upset if you find out your child has DS, but I don't think it's necessarily such a devastating thing either.

I would assume that if 90% of women who find out that they are carrying a fetus with DS decide to abort the fetus, the diagnosis is seen as bad news to them.

I also think that if DS is a condition that would alarm you if the rate of fetuses with it was growing & the number of babies born with DS was increasing, then it is probably bad news.

[Sarah]

Originally Posted by Delta View Post
For example, I almost responded to your post earlier that made mention of the 'bad news' that you get when you find out your child has DS. I don't really look at it that way. I'm not saying it's wrong to be upset if you find out your child has DS, but I don't think it's necessarily such a devastating thing either.

I will come out and say I'd be very upset. Clearly, I wouldn't abort my child, but my feelings might verge on devastation. Perhaps that's the wrong way to feel, but that's how I think I might feel.

But I feel confident that we'd adjust and we'd come to be delighted about our child. It might just take longer for my "vision" of my child to catch up with the reality.

[amew]

I will come out and say I'd be very upset. Clearly, I wouldn't abort my child, but my feelings might verge on devastation. Perhaps that's the wrong way to feel, but that's how I think I might feel.

I agree. I would be extremely distraught, and I think that is an exceedingly common response, regardless of whether you would keep the baby, and regardless of how much you might eventually grow to love and delight in your child. I can't imagine not being devastated upon being told that my child has a chromosomal abnormality that means he or she has a nearly 50% chance of having a heart defect (many of which require heart surgery), a 10% chance of an intestinal malformation requiring surgery, a 50% chance of visual or hearing impairment, and a near 50% chance of developing Alzheimer's by middle age, in addition to the mild to severe mental retardation and social stigma that comes with DS and the not insignificant possibility that the child will be dependent on you, the parent, until you die or become unable to care for that child.

To be honest, I would be downright annoyed, if not angry, if a doctor told me my child had DS but then tried to tell me that it wasn't "bad news." Sure, people with DS lead fulfilling and happy lives and contribute much to the lives of their families and friends, but it still brings with it a host of potential health problems, and hearing that your child has health issues--or even a greatly elevated chance of having health issues--is bad news for most people.

I can understand why some people have a very hard time understanding why DS is cause for abortion, but I also have a hard time understanding the "it's not such a big deal attitude" that some posters have. It seems like a pretty big deal to me.

[Delta]

I will come out and say I'd be very upset. Clearly, I wouldn't abort my child, but my feelings might verge on devastation. Perhaps that's the wrong way to feel, but that's how I think I might feel.No, those feelings are totally valid and I'd feel much the same way as I got used to the idea that my baby wasn't going to be the baby I assumed it would be. My point was more towards it not being devasting enough to warrant an abortion, as the post I was responding to discussed.

[LeighW]

I would be extremely distraught, and I think that is an exceedingly common response, regardless of whether you would keep the baby, and regardless of how much you might eventually grow to love and delight in your child. I can't imagine not being devastated upon being told that my child has a chromosomal abnormality that means he or she has a nearly 50% chance of having a heart defect (many of which require heart surgery), a 10% chance of an intestinal malformation requiring surgery, a 50% chance of visual or hearing impairment, and a near 50% chance of developing Alzheimer's by middle age, in addition to the mild to severe mental retardation and social stigma that comes with DS and the not insignificant possibility that the child will be dependent on you, the parent, until you die or become unable to care for that child.


Me too. Which is why the 10% who wouldn't teminate have an amnio or (now) CVS. When I was pregnant with my DD at age 38-39 and agonizing about whether to have an amnio, my SIL gave me some great advice. She said to have the anmio so I could be prepared. If the baby had DS, I could could be upset then and grieve the child I wasn't going to get and figure out how to deal. Then, when my DD was born, I could be happy to have a living baby, instead of devastated that she had DS. (She didn't have DS.)

My uncle is severely retarded and has been instutitionalized for 35+ years. While I'd never say it would be better if he hadn't lived, I've seen firsthand what a toll a disabled child can take on a family. My grandmother was a single parent and did not have the financial resources to properly care for him or even to make her life a bit less of a struggle (and there was no such thing as special ed or other special services 50 years ago).

[Anna Low]

I'm honestly not certain what I would do.

As I sit here and think about it, one huge factor for me would be life for this child after I'm gone. I'm 40 and my husband is 46. We have no children. He has one older sibling and I am an only child. We are both children of older parents who were the youngest of their brothers and sisters. As a result, we both have few living relatives remaining and the ones which are still alive are either older than we are or not close. I know that I'm not a senior citizen by any means, but a child with a moderate to severe disability would require the lifelong care that my husband and I wouldn't be able to provide - our lifespans wouldn't allow it. We don't have the family structure to depend on someone to supervise care after we're gone. And truthfully, that would scare me much more than living my life with a Downs child.

I know I will probably be roasted on a spit for thinking this way, but I know that I would live the rest of my life being terrified about what would happen to this child in their later years.

[msnicolea]

I worry a lot about autism--and I would absolutely be distraught if Lucas was diagnosed as such. What is there was a way to diagnose autism in vitro? Would that have influenced our choices?

Everyone has dreams for their child--and those dreams do not include a physical, mental or emotional handicap. That isn't to say that we don't cope and love our children and move forward--but not too many people would be happy or un-phased by some sort of "negative" diagnosis.

[mgrace]

I worry a lot about autism--and I would absolutely be distraught if Lucas was diagnosed as such. What is there was a way to diagnose autism in vitro? Would that have influenced our choices?
I worry a lot about autism as well. I know that testing for Down's, autism, etc. wouldn't affect our decision, but that isn't to say that we wouldn't be unphased by a diagnosis. Totally get what you are saying, msnicolea.

[artist]

Do I dare be the one to come out and admit, if I were in that situation and facing such a decision, I'd be part of the 90% who would terminate the pregnancy?

[andy's di]

Do I dare be the one to come out and admit, if I were in that situation and facing such a decision, I'd be part of the 90% who would terminate the pregnancy?

I'm in this camp as well, although at this point I'm not planning on having any children at all.

I have known and been friends with people with DS and they ARE very special and taught me a lot about tolerance and seeing past the disability. But for me personally I don't think it's something that *I* could handle as a mother, and as PP have mentioned, I too would be concerned about the quality of life they would lead as an adult and who would care for him/her once I pass on.

[gayle]

Do I dare be the one to come out and admit, if I were in that situation and facing such a decision, I'd be part of the 90% who would terminate the pregnancy?

Nope. You are not alone.

Although I "feel" all the dilemma's of making a decision to abort, and I have opinions as to what is a valid reason, and what isn't; I remain so fiercely pro-choice, that ANY reason a woman has for terminating a pregnancy is her decision, and hers (and her partners) alone.

[imagirliegirl]

Do I dare be the one to come out and admit, if I were in that situation and facing such a decision, I'd be part of the 90% who would terminate the pregnancy?

Me too. I'm on the fence about having kids but if I chose to have them I would be one of those people.

But for me personally I don't think it's something that *I* could handle as a mother

Same here.

[AlisonCO]

This is a truly honest question and not at all meant to be snarky - for those of you that want kids but would terminate if you found out that your baby had DS, how do you reconcile having kids at all? I mean you can find out if your fetus has DS, spina bifida etc and I understand feeling like you couldn't do it, but what if your kid was diagnosed with autism at 3, got leukemia at 6 or had an infection and became deaf or blind at 10 or was paralyzed from the waist down at 15. These are all things that can happen that we can't know ahead of time, plan or predict. How can you think that you can "handle" those possibilities? Again, I truly would like to know as this is something that I just can't wrap my brain around.

Thanks!

[ejs]

This is a truly honest question and not at all meant to be snarky - for those of you that want kids but would terminate if you found out that your baby had DS, how do you reconcile having kids at all? I mean you can find out if your fetus has DS, spina bifida etc and I understand feeling like you couldn't do it, but what if your kid was diagnosed with autism at 3, got leukemia at 6 or had an infection and became deaf or blind at 10 or was paralyzed from the waist down at 15. These are all things that can happen that we can't know ahead of time, plan or predict. How can you think that you can "handle" those possibilities? Again, I truly would like to know as this is something that I just can't wrap my brain around.

Thanks!
To me, they are completely different scenarios. Once that child has been born, it is my responsibility to give that child the best life he or she can have. There's a difference between handling a bad situation if it comes up and volunteering to take on that bad situation when you don't have to.

[andy's di]

To me, they are completely different scenarios. Once that child has been born, it is my responsibility to give that child the best life he or she can have. There's a difference between handling a bad situation if it comes up and volunteering to take on that bad situation when you don't have to.

Exactly what I was trying to write!

[wendalah]

When I was pregnant with my DD at age 38-39 and agonizing about whether to have an amnio, my SIL gave me some great advice. She said to have the anmio so I could be prepared.

I just had this discussion with my doctor today. What he said convinced me to go with the amnio: If there is something wrong with the baby, not only do I need preparation, but he as my doctor will be prepared for any complications that may arise in conjunction with the defect (should I decide to continue with the pregnancy). That was pretty sound logic to me.

[dionysia]

EJS summed up my feelings.

Di

[SingleWhiteFemale]

I gotta tell you, having lived with a disability all my life, my experience has been completely different. Money made me less disabled, and that was the bottom line. Where's the clapping smiley when you need it?! You're dead on, ysolde. I shudder to think what my life would be like now if my parents didn't have the amazing health insurance (that because I'm handicapped, I can have for many years beyond the normal "kick your kid off at 22" requirement), if I didn't live in this country, if I didn't have access to some of the best specialists in the world, if I didn't have parents who could take off work at a moments notice or stay with me in the hospital...

As to aborting a DS baby, I couldn't honestly tell you what I'd do unless I was in that situation. I think it is obscenely easy to say "oh, if X were to happen to me, I'd do Y," but you truly don't know until you're there. It's easier to make that decision for others or in a hypothetical, but very different if it is your own reality.

In my short 21 years and being handicapped, I've seen many families broken apart because of a child's disability. It isn't an easy road by any stretch of the imagination. Wow.

This thread just completely breaks my heart. I just am at a complete loss for words.It completely breaks my heart (and dumbfounds me) that you're sitting there thinking that this is an easy black and white choice.

The reality is, a lot of families do not have the resources (financial, emotional, etc) to take care of a child with such a disability. Could you be the caretaker of such a dependant child for the rest of your life, in addition to your other children and obligations? Could you take care of such a child without outside financial resources? Be careful throwing out judgements, LyL.

[isign]

I also have a hard time understanding the community of deaf people who are opposed to the cochlear implant surgery that gives hearing to deaf children. It's not that being deaf or having DS is the worst thing in the world, but it's still harder than having hearing or not having DS.

Kedzieb,
I think that some people believe that having DS or being deaf or (insert any physical/mental challenge here) is a gift, so to speak. That these conditions are to be dealt with and celebrated almost. Ok, maybe not the conditions themselves, but the people who have them?
Ugh, I'm not expressing myself well.


I might be able to explain some here on deafness, but I am by no means an expert. There are two 'classifications' in the deaf community. Some say, I am deaf, and some say I am Deaf. Those that say Deaf are looking at it as more of a 'that's who I am, it defines the way I think and interact with others, it's my culture, my history'. It's like saying I'm a Christian, that defines me as a person. Those who say deaf, are saying it like one who'd say I'm blind. The deaf community is very different from the blind community, or any other physical/mental challenge group. For me personally, I would encourage my child into the Deaf community and most likely not pursue the cochlear. But I've totally derailed the thread.

For us, we had the test done recently, to be prepared. Abortion is not an option for us. It did come back positive for spinal problems, but was later ruled a false positive. In that week of thinking about the posiblities for the future, I knew my baby was a huge answer to prayer and no matter what the disability we would raise him the best way we could.

[imagirliegirl]

To me, they are completely different scenarios. Once that child has been born, it is my responsibility to give that child the best life he or she can have. There's a difference between handling a bad situation if it comes up and volunteering to take on that bad situation when you don't have to.

Well said.

[jnettie]

I am pro-choice. I think that what a woman does with her body for her health and life is her individual decision to make. There are so many different value sets out there, that to legislate for just one - that abortion is murder - is a mistake.

My own, personal stance on abortion, however, has changed over the years. I think it is very important to consider a wide range of moral ideas along with medical, emotional, and monetary considerations when faced with whether to abort a fetus. But, once again, what I consider my line for a "good" reason for an abortion is going to be different than someone else's.

This does not, however, preclude discussions on the morality of certain decisions to abort, much like the one we are having now. These discussions are very good to have, IMO. Much better than a sweeping ban on abortion altogether.

So, to that end...

To me, they are completely different scenarios. Once that child has been born, it is my responsibility to give that child the best life he or she can have. There's a difference between handling a bad situation if it comes up and volunteering to take on that bad situation when you don't have to.

I totally disagree. Whether a chromosomal abnormality inutero or a debilitating accident later in life, the end result is the same - the possibility of becoming a life-long caretaker to your child when you decide to become a parent. Which is where I disagree with the decision to abort a fetus that has DS. I think that is you choose to be a parent, you choose to care for your child, no matter what. And unless my child would experience an extremely short and painful existence or my life was in danger, I would not choose to abort a fetus with DS. As for unplanned pregnancies, I think that those who would abort a DS fetus probably would have aborted anyway, or are otherwise not so much unplanned as pleasant surprises.

On the flip side, I don't think I'd want to force someone to have a baby with DS if they don't want to take full responsibility. Perhaps I am in a place in my life where I would not make that choice; perhaps I have the family support system already in place to help DH and I raise a child with DS, but that does not mean everyone would have those advantages nor make my same choice. But forcing someone to give birth to a child they may grow to resent? That's never a good idea.

[jajacobsen]

Do I dare be the one to come out and admit, if I were in that situation and facing such a decision, I'd be part of the 90% who would terminate the pregnancy?


I think I've been pretty clear ab