Should the Baby be Born?

A reader sent this to me. I thought I should edit it down at first because of the length… but on second thought, I’m leaving it as is. The context provided throughout the email is as important to read as the questions the reader raised (I’ve put the questions in bold just to emphasize them):

I don’t know if this is necessarily an atheist question, but I recently had an experience that posed a huge ethical question for me. I’m pregnant and had a slight scare, after some prenatal testing, that the baby might have Down’s Syndrome. As it turns out, we are most likely out of danger for this problem. But while I was furiously researching on the internet to just find information, I came across what I thought was a curious cultural contradiction.

The statistic that popped up, over and over, was that 90% of women who get the prenatal diagnosis terminate their pregnancies. I would be one of these women, if I had to make that choice. However, if you look for emotional support or testimonials on the internet, you will not find them. I only found one, from a woman who terminated and felt she had made the right choice. She said she had dealt with a lot of accusations about her choice. Yet she is not alone. It seems that most people would choose not to have a child with Down’s Syndrome. But anyone who vocalizes this sentiment gets put down as a selfish murderer.

The statistic that 90% of women terminate does not take into account women who don’t even get the prenatal testing, because they truly would accept any child born to them. But it seems that most people who want information want it so they can end their pregnancies if the news is bad.

The argument from the vocal minority who do test and go on to have the child seems to be that having a “perfect” child so parents can look good to their friends is a selfish motivation. But I think having a healthy child is already pretty UNselfish. One could just as easily argue that bringing a very ill child into the world, so that one can seem to have the moral high ground and therefore look good to friends, is the truly selfish act.

For me, the choice is clear. Down’s Syndrome is most often a fatal genetic flaw. I think something like 75% of embryos with an extra 21st chromosome don’t even make it to birth. Some do, but having a child that will always be your baby and a dependent is what seems selfish. Very few people with Down’s Syndrome can live independently, although there are much better therapies and programs to help these people achieve more than they used to. There is improved healthcare for them these days as well, but is having a baby who might require painful heart surgery unselfish? Is having a baby who might never be able to get married selfish? The quality of life seems impaired, no matter how you look at it. I understand that people with Down’s Syndrome are happy, and there is something to be said for that. They may not become doctors, but they are loving, happy people. Still, it seems to me that they are living half a life, even if they don’t know it.

It almost feels as though there is more sympathy for a teenage mother who decides to abort than for a grown woman who decides not to bring a severely handicapped child into the world.

Obviously, religion is part of this decision. But there is more to it than that. There seems to be a special revulsion, on some basic moral level, to terminating a pregnancy based on a disability. Yet this particular disability, because it’s such a serious genetic flaw, seems to be an exception for most women, although they will not speak openly about it. I would certainly not terminate for other physical disabilities, but for Down’s Syndrome, there would be no debate. I’m sure the experience of ending the pregnancy would be simply awful, but I would never question my decision.

And women who make the decision to have a child with Down’s seem to have no problem hurling accusations against the silent majority who decide not to have the child. I believe the silent majority is in the right. I am so grateful for the prenatal tests which allow mothers to avoid having a baby who is mentally retarded and potentially physically disabled as well.

Anyway, I will most likely not have to make this decision, as my odds turned out to be very much in favor of having a child with only 46 chromosomes. But I am floored by my day of Googling and what I read online. How do you think most atheists feel about this issue? I think in the absence of believing in a soul, the ethical implications are still complicated for many people.

One more thing about that 90% statistic….it strikes me that since so many people in the US are Christian, that statistic probably takes many religious people into account. So are Christians terminating these pregnancies and just feeling awful about themselves?



[tags]atheist, atheism, abortion, pregnancy[/tags]

  • http://blog.lib.umn.edu/fole0091/epistaxis/ Epistaxis

    For the sake of argument, we should ignore the greatly increased risk of spontaneous abortion and assume the fate of the embryo is entirely up to the mother.

    I think trying again for an unaffected child is ethically equivalent to curing a real live newborn of the disease. So there. But I’m positive I don’t speak for all atheists, or even a majority or plurality.

    P.S. “Down Syndrome,” not “Down’s.” Or just “trisomy 21″ if you’re a geneticist.

    P.P.S. What if a genetic screen could tell you if the child will be gay? Or an atheist?

  • http://prosthesis.blogspot.com macht

    “Still, it seems to me that they are living half a life, even if they don’t know it.”

    That sentence makes me really angry.

  • Karen

    One more thing about that 90% statistic….it strikes me that since so many people in the US are Christian, that statistic probably takes many religious people into account.

    I hadn’t heard that 90% statistic, but it jives with the articles I’ve read about how born-again Christians get abortions just as often as non-Christians. Even anti-abortion women who picket health clinics have been known to turn up as patients themselves and apparently it’s not as rare as one might think, according to several abortion providers who’ve written about the phenomenon.

  • Claire

    People of all stripes tend to be very much more forgiving of their own actions. So what would be very wrong for another to do, was simply necessary for me, so I did it, end of story. You can call it hypocrisy, or you can just call it human nature.

    Most people forgive themselves (so surprisingly easy!), and those that don’t often end up crusading to take away the same choice from others, like the original Roe of Roe vs. Wade. Of course, it might not be a mistake for another person, but it was for her, therefore other people need to be protected from making a choice, because she feels bad and can’t let it go.

    There is a lot of inconsistency around babies, because emotion is seldom consistent. Responsible mothers-to-be go to extraordinary lengths to make sure their babies are as safe and perfect as possible, they give up smoking and drinking and anything else that might even potentially be harmful in any way, and society is extremely critical of them if they don’t, even arresting addicts for exposing babies to drugs in the womb. Clearly, a perfect healthy baby is extremely important and much to be desired.

    So, if it is then made clear that the baby is not going to be healthy and will indeed be severely impaired, it would seem rational to have an abortion and try again, but society then does an about-face and says no, every life is equally valuable, an imperfect baby is just as worthy as a perfect one.

    But this isn’t really about logic, is it? It’s about love and responsibility, and about life throwing people some nasty curves, and about women doing the best they can in a bad situation.

    I’m not surprised about the 90% figure. Women, despite their reputation for being all about the emotions, are extremely practical.

  • http://godlesswasatch.blogspot.com John Moeller

    Ok, I keep rethinking what to say, and I can’t come up with a good answer. All I can say is that abortion is double-edged. To allow the choice is to allow it for any reason, even one that we may find repugnant.

    I don’t know whether I would terminate based on Down Syndrome or not, if I were in the position to choose. I also don’t know whether I would choose to terminate at all. I have to think, though, that having the choice (through the first trimester, IMO) is better than not having it.

  • Jen

    I probably would abort my imaginary Down pregnancy.

    I am going to go ahead and get that out of the way. I am not a kid person, and I never have been, and the idea of raising a normal child is terrifying enough. Now, I am also going to throw this out there- I don’t know much about the specifics of Down Syndrome, so assume I am speaking more generally about the more difficult disabilities since I am not too up on the specifics here.

    Parents of children with special needs have a damn difficult time in America. We have no socialized health care, little by way of national resources for caregivers, and a difficult time working with anyone who doesn’t fit into the mold. A child with extreme special needs often needs 24-hour care, which two parents may try to provide while also working to keep their rapidly- dwindling health care in tact, and raising their other children, and trying to have a marriage. The statistics point to divorce in most cases.

    Now I work with (next to, not as in I teach them) some higher-functioning adults who have mental disabilities, a few with some physical ones too. I’ll be honest here, they often seem to have a half-lived life. That’s not a popular thing to say, and I am probably being all kinds of discriminatory here, assuming that the way my life goes is the best way. But there are a lot of things that I value that they don’t get to have- true independence, sexual relationships (often illegal under the law as rape because they can’t understand the consquences of their actions), marriage, children, the ability to blend in socially, an awareness of what other people think of them, higher levels of thought, etc, etc. Maybe its the result of reading Flowers For Algernon at a young age, I don’t know, but they as a general rule don’t seem to get to have the things that make life worth living.

    I think society tends to fetishize the disabled, too. They are more childlike, we seem to think, and therefore devoid of real personalities besides “angel I am lucky to know, because they have more pure love” or something like that. It seems to come up whenever disability is discussed: “I know a disabled person of some type, and they have such joy and wonder at the world that it makes me ashamed to ever think the world wouldn’t be a fine person if they had never been born”. They miss that the disabled are like everyone else, and some of them get to be jerks too.

    P.P.S. What if a genetic screen could tell you if the child will be gay? Or an atheist?

    Might happen one day. Right now, in India and China, parents screen for gender and abort female babies at a fairly high rate. Now, as a feminist, I am all for there being an equal number of male and female babies, and as a realist, I see a lack of an equal number to be dangerous for the woman who are born. But I have a hard time condemning parents who abort their female babies given that the social structure values men so highly, especially when they are limited to one child in China. If your society has been saying for 3000 years that boys are better, that isn’t going to go away overnight. And if women have had expensive dowries for at least 1000 years, as in India, that isn’t going to go away either, especially in poorer sections of the country.

    I don’t know if they will ever be able to screen for “atheist” but, while I don’t like the idea of gay people being aborted for such a stupid reason, I also don’t want people have to grow up with parents that are completely unable to care for them. If they can’t, or won’t, I probably err on the side of “better to never be born”. I tend towards believing life is instrimentally valuable, though.

  • http://skeptigator.com Skeptigator

    One more thing about that 90% statistic….it strikes me that since so many people in the US are Christian, that statistic probably takes many religious people into account. So are Christians terminating these pregnancies and just feeling awful about themselves?

    If my years of evangelical Christian upbringing has taught me anything it’s that only atheist baby-killers have abortions…

    … and kick puppies.

  • Mriana

    I’m ambiguous about a baby with Down Syndrome. There was a fine actor in an old show called “Life Goes On” who had Down’s and he seemed to do well in life. So, I don’t know if abortion is a good thing or a bad thing in such an instance. I guess it depends on how severe it is and how the parents feel about raising a child with Down Syndrome, as well as their capability of raising such a child.

  • April

    No judgments on abortion, it’s a hellish decision to have to make. That said, I feel I should point out that people with Down Syndrome sometimes have perfectly normal intelligence and do in fact live independent lives. Just something to keep in mind. My child has an Autism Spectrum Disorder and I can’t imagine not having him in my life. My brother has a genetic bone disorder and is an amazing human being who lives without my parents supporting him. Just because the genes are different, doesn’t necessarily mean the quality of life is worse. Eugenics is a very slippery slope.

  • Jeff

    Ethical and moral issues aside if i went through with the abortion i would always wonder and that for me would be enough to want to see the pregnancy through to it’s end. There’s always adoption maybe.

  • valhar2000

    Strange; the idea of aborting a child who is disabled seems obvious and uncontroversial to me.

    I don’t see why it is more virtuous to attempt to correct for the child’s limitations than to just remove the limitations in the first place. While it is entirely true that disabled people can overcome their lot and let their indomitable spirits lift them to new heights, how much better would it be if they had those indomitable spirits and were not disabled?

    This argument, obviously, depends on the likely effects of the disability on the child to be born, so sometimes it will be less than clear, but this is not one of those cases.

  • Polly

    The quality of life seems impaired, no matter how you look at it. I understand that people with Down’s Syndrome are happy, and there is something to be said for that. They may not become doctors, but they are loving, happy people. Still, it seems to me that they are living half a life, even if they don’t know it.

    To me this was the hardest part to read. They’re happy loving people who just don’t know that they shouldn’t even have been brought into existence.

    The 75% spontaneous abortion rate (if that’s what it is – I dunno) is, IMO, a far more moral line of reasoning than deciding that a handicap that can still produce happy, loving people is too much to deal with for the one who’s life hangs in the balance.

    The only reason there are better therapies is because some are still allowing DS babies to be born, and some are surviving into adulthood – and functioning.

    I don’t think anyone can accuse someone of being selfish for not wanting to care for a disabled person all their lives – that’s unconsionable and whoever says that should rescue/adopt a DS baby. But, it sounds like a flimsy excuse to say it’s for the child’s good. It’s not. If you would’ve aborted, then do so. But, don’t make excuses.

    Putting myself in the child’s position since that’s the position no one ever really grapples with except to scapegoat their own moral conundrums, I’d take a life of therapy and even a large amount of pain over no life at all. I’m sure if you asked the DS people around, and yes, there are a few out there some even with jobs, what they thought you wouldn’t hear a lot of regret about being alive.

  • Betsy

    Here is a related question. Some years ago a good friend of my daughters had a baby with a serious genetic disease that would probably cause him to die before he was 20. So, what did she and her husband do? They went right ahead and had another. He had the same disease (DUH). I thought their decision was the most immoral thing I had heard of in anyone I knew personally. NOW they are divorced and she has married somebody else. So he isn’t even with her to help raise these two (possibly doomed) boys. No genetic testing, no second thoughts. She is not religious and I don’t think he was either. Just plain selfish and stupid. I guess the question is why in the world do people do these things?

  • Anon

    P.P.S. What if a genetic screen could tell you if the child will be gay? Or an atheist?

    This is the slippery slope argument, and in this case, it might not be entirely a fallacy. Where do you draw the line? What’s the ethical limitation? Personally, I’d be completely happy with a child who is genetically predisposed to be gay. I can’t imagine there’s an atheist screening or ever will be. But what about cleft palate? Severe spina bifida? A kid who might be inclined to be obese?

    However, I do think there’s a line, and it’s a hard line. Having a disablity might be an obstacle, but having an extra 21st chromosome in every single cell of your body is more than an obstacle. It’s normally not something fetuses even survive.

    Complicating this issue is the fact that when most women get a diagnostic test, they are past week 13 of their pregnancies. Screenings occur earlier, but a true diagnosis can only be made through invasive testing. So these are usually second trimester abortions. By the time they occur, the mother has seen the baby move on the ultrasound. It’s got to be awful to think about ending the pregnancy.

  • http://www.juliawrites.com Julia

    How do you think most atheists feel about this issue?

    For me, that was the question that really caught my attention. As far as abortion goes, I think that you can probably find Atheist pro-lifers without having to try too hard. Maybe they’re not the rule, but it can happen. I think it’s presumptious to assume that Atheists all share the same “moral values.” I can’t speak for all Atheists…well, just the really cool ones ;)

    I think this whole issue is an extremely personal one and really women should have opportunity to make this choice for themselves. There is no true right or wrong answer here. We all have our own individual circumstances. What if this is a woman’s 4th child and caring for a special needs child would not only emotionally/financially burden her but her other children as well? What if she already has two other special needs children and just can’t do it again? What if she just decides she’s not emotionally up to it? What if she knows her boyfriend/husband will be abusive to a child like that? So many things come into play. That’s all her decision to make and I don’t want to limit her ability to make it…EVER.

  • terri

    Regardless of your “-ism”, being a parent should involve a lot of issues. If the child is healthy, then having a baby means minimum 18 years of responsibility for that child’s upbringing, both physical and mental. It’s a huge decision and you will have to learn how to sacrifice for another person, who may not be very nice sometimes and won’t ever be grateful until grown (if then). :) If that baby has a chronic disease, then it seems you would have to plan for their entire life, not just childhood; the child will likely never make a lot of money, if any, and healthcare is expensive. Then there’s what happens when you get too old to care for him/her; will your relatives do this? Do you have another child to be her brother’s keeper for ever? If you count on government, the care may well be substandard… Determining your ability to care for this child as long as necessary would be a major deciding factor in whether or not to abort. Otherwise, you just bring them here for a little while for what reason – personal fulfillment?

    And then there’s the arguments against allowing bad genes into the breeding pool in general….

  • ESVA

    I’m not sure whether I could ever make the decision to abort a fetus, but DS is probably a situation in which I could consider it. I say that even though I know two people at the extreme ends of the DS syndrome.

    I have a DS brother-in-law who is severely handicapped. He is about 40 years old now, with the mental capacity of a typical 2-year-old. He also went blind at about age 10. In caring for him, all of my in-laws have developed enormous capacities for love, patience and empathy. Nevertheless, he has had a difficult life. At the other end of the spectrum, I know a young man with DS, in his early 20s, who recently began working full-time. He is friendly and has an awesome sense of humor. He’s really a delight and his parents and siblings are incredible people. Still, he probably never will marry and have a family, and he will spend all of his life working menial jobs like the one he holds now. And he’ll probably continue to live with either his parents or his siblings for the rest of his life. Is it appropriate for me to judge the quality of his life by my standards? He seems to be happy as he is, and perhaps that should be a good enough standard for me, as I don’t have to live his life, he does.

    I think deciding whether to abort a fetus has to be one of the most stressful decisions a woman will ever make. I don’t think there is a clear-cut answer that such a decision is always right or wrong. There are many variables that have to be weighed and these variables differ from individual to individual. I am certain about two things: a) the government has no business impeding a woman’s right to make that decision or impeding her access to do so safely, and b) society and religious organizations ought to be supportive rather than dogmatic and judgmental about this issue.

    I hope all goes well for the woman who posed the question.

  • http://enonomi.blogspot.com/ EnoNomi

    My personal opinion is that the woman who is pregnant should have the option to terminate or continue a pregnancy regardless of the reason. Anyone else’s judgment is irrelevant, they’re not the one having the baby, and they’re not the one who will need to support and raise the child. To force motherhood on someone else is truly selfish and reprehensible.

  • Disappointed

    There is improved healthcare for them these days as well, but is having a baby who might require painful heart surgery unselfish? Is having a baby who might never be able to get married selfish? The quality of life seems impaired, no matter how you look at it. I understand that people with Down’s Syndrome are happy, and there is something to be said for that. They may not become doctors, but they are loving, happy people. Still, it seems to me that they are living half a life, even if they don’t know it.

    It absolutely breaks my heart to read this. I just don’t even know where to begin.

    I guess I’ll just jump in and see where I end up.

    Having a baby is the ultimate leap of faith. You have to believe that your child will know more bliss than sadness, more happiness than suffering. Truly we all take our chances when we embark on parenthood. Having a baby that is facing a possible medical diagnosis and one that invites “quality of life” discussions such as this, requires even more faith…especially when you haven’t even met that person yet. I can only imagine how difficult it is to make a decision about a pregnancy in that situation.

    I am a firm believer that the only person who has a right to judge the quality of a lifetime is the person who is leading that life. When faced with a prenatal diagnosis, prospective parents are put in the precarious position of examining what that criteria is for another, potential, person. It’s a lot of responsibility.

    That all said, I would hope that whether or not a child will grow to marry would play a significant role in one’s decision, as if that were they case many of us should never have been born. I have so much empathy for the OP and for what she went through during her pregnancy, but such empathy doesn’t negate the disappointment I feel when I read that whether a child will marry is, apparently, more significant in determining the quality of a lifetime than whether that child grows up to be a happy person.

    They may not become doctors, but they are loving, happy people. Still, it seems to me that they are living half a life, even if they don’t know it.

    How can a person possibly be living a half life if they are happy? I can only wonder what kind of shallow criteria the OP is applying to her definition of quality of life when happiness becomes insignificant.

    My daughter has Trisomy 21 or Down syndrome, which isn’t possessive in the US. I can’t tell you how offended I am to see her life be tossed around as justification for an argument on ethos which I don’t actually see as being all that ethical to begin with. If someone wants to know what the quality of life is for someone with T21, then ask her.

    I will venture to say that in her short life she has certainly known far more bliss than suffering and is no way “severely” handicapped. Nor is she unhealthy. She simply is developmentally delayed and, as she grows, I anticipate that she will be diagnosed with mental retardation. So, when applying this discussion to a person such as herself, quality of life is all about mental capacity. In all honesty, I think the conversation usually is, but because people often don’t want to admit that mental retardation scares them, they wrap themselves up in other possible health issues so they don’t have to reveal what they are really frightened of.

    Everyone with T21 is different, just like all of us. My daughter is by no means a “T21 Superstar”, but she is far less delayed than I thought she would be when she was born. She goes to public school, rides the bus, takes swimming and dance lessons, and so far is leading a fairly typical life…albeit slower. She is certainly different than her peers, but not as much as I expected.

    And though I could sit around all day and itemize everything she can do and all that she can’t, I won’t because it would bore you and do her a great injustice. She is far more than the sum of her abilities. We all are. That is why it is so disheartening to see someone so easily throw happiness into the wind as though it isn’t the best thing we can have in our lives.

    She has it.

    Will she be a doctor? Not so much.Will she get married? Maybe…as people with developmental disabilities are more and more mainstreamed into our society, it is happening more and more often. But if she doesn’t get married, that’s fine too.

    Will she live with me all of my life? Maybe. Maybe not. Honestly though, I’m okay with that happening. I love her. I want to be with her. She has been the single most influencing factor in and on my life and she has made me who I am now. As much as I gave birth to her, she gave birth to me, and I am so, so grateful for that.

    The person I once was did think I had the right to judge the lives of others. The person I once was had a fairly shallow definition of the worth of a lifetime and was a shallow version of whom I am now. The person I once was was only living half a life.

    I am by no means saying this is true for everyone or anyone other than myself. I am passionately pro-choice and believe that a person should be able to make their own choices; to write their own destiny. And that’s the thing; when people have the audacity to make assumptions about my daughter’s life because she has an extra chromosome or my life because my child has a disability, they are robbing us of our right to tell our own story; to write our own tale.

    How ethical is that?

    As for

    However, if you look for emotional support or testimonials on the internet, you will not find them.

    , I can assure the OP that she just wasn’t looking in the right places. There are hordes of women who have made that choice without shame and an even bigger audience who agrees with the OP – that it is unethical to bring a baby into the world with a disability. Am I summarizing that correctly?
    Maybe a better way of saying it is that it is unethical to bring a baby into the world that you know will suffer – but of course that begs the question of who won’t experience some suffering or demands the definition of what is too much suffering. Some would say to live is to suffer. Period. Or, it could also be said that it is unethical to bring a baby into the world without every opportunity available to it, but that would also indict the majority of the world’s parents as well, especially those in the lower classes.

    Down’s Syndrome is most often a fatal genetic flaw. I think something like 75% of embryos with an extra 21st chromosome don’t even make it to birth.

    That’s just not accurate. Nobody will ever really know how many miscarriages are caused by T21 as most diagnoses are made until the end of the first trimester/ beginning of the second. As it is estimated that up to 25% of ALL pregnancies miscarry in the first trimester, you can see how hard it would be to identify which were due to T21. Of the studies that are available, second and third trimester losses usually average around 30-40% (if I remember correctly). I have also heard the 75% statistic, but that includes estimating first trimester losses based on theory and doesn’t acknowledge the huge gap between the lowest and highest possible percentage. A bit misleading to quote that statistic without putting it in context, IMO.

    And women who make the decision to have a child with Down’s seem to have no problem hurling accusations against the silent majority who decide not to have the child. I believe the silent majority is in the right.

    I don’t think in any way the majority is silent, which is why the disability community in whole has become so vocal. The children with intellectual disabilities today are only the second generation being raised at home because society long told families that these children would ruin their lives and should be locked away in institutions. Those children, they suffered for sure, and, as a result, the disability community is not willing to be locked away anymore. I know there are mothers out there in the T21 that do believe it is unethical to terminate a T21 pregnancy, and I am sure these are the women the OP is referring to, however, the majority of the outrage I see in my own community in these situations isn’t about the decisions made, but is about the justification used; about using the lives of our children to justify someone else’s decision. It’s about others judging the quality of our own lives for their benefit. There is a world of difference between saying “I couldn’t take the chance that my child would suffer” and “These people are living a half life”.

    And let me stress that my opinions are not about the decisions people make in these situations because what is right for me, may not be for another and vice versa, but rather that the OP has so easily devalued the lives of those with mental retardation. If a person with T21 defines themself as happy that should be just as valid as somebody defining themselves in a similar fashion with typical chromosomal makeup. If she can’t see the discrimination inherent in her words, then I can only hope she one day does. Maybe then it would be a bit easier for her to find the support she has been looking for.

  • Mriana

    Disappointed, I’m glad to see the other side here. She might not be a doctor, but she could be an actor, like that one guy on “Life Goes On”. I think he even appeared on “Touched By an Angel” too. He wasn’t a bad actor either. I wonder what he’s doing now?

  • Anon

    I was the original poster.

    All I read on the internet were glowing, inspiring stories like yours from parents.

    But did you know your daughter was T21 before she was born? That’s really the heart of the issue. Most people who find out do not go forward with the pregnancy.

    I’m sure the experience you’re having is enlightening and enriching. Did you actively choose it?

  • Jamie

    I’m an atheist and have always said that I am pro-life for myself and pro-choice for the rest humanity. That was really put to the test about two years ago. My baby was diagnosed with trisomy 13. Basically, it is a fatal diagnosis. I struggled, but stayed true to my beliefs. I couldn’t imagine terminating because she wasn’t perfect. I let nature do what it would and hoped to meet her.

    I considered that what I was doing might be selfish. Would her quality of life be so terrible that her life wasn’t worth living? Would she be in pain? In the end I decided that there were no certainties. There were far too many “what if”s to chance her life. Who was I to decide what a good quality of life was anyway? Did her life have less value than a healthy baby? If she was happy and loved (and she was much loved), who was I to take a chance at living away from her? When you get right down to it, that is all any creature wants. To live.

    I suppose my internal struggle didn’t matter much anyway. She was stillborn at full term. All she knew was warmth and security. We should all be so lucky.

  • Disappointed

    I was the original poster.

    All I read on the internet were glowing, inspiring stories like yours from parents.

    But did you know your daughter was T21 before she was born? That’s really the heart of the issue. Most people who find out do not go forward with the pregnancy.

    I’m sure the experience you’re having is enlightening and enriching. Did you actively choose it?

    No I didn’t know my daughter “was T21″ before she was born – firstly because she isn’t T21 she has T21 (ie. she is a person before a diagnosis), and secondly because none of my prenatal screening nor my ultrasounds came back showing an increased risk for T21. As I said earlier, I really feel for people who have to go through a prenatal diagnosis and I can’t imagine how difficult it is. Neither can you, correct?

    However, i did very much choose this experience. So often people assume that because a person didn’t choose whether or not to bring a baby into the world that they didn’t choose that baby, but it isn’t that black and white. Obviously deciding whether or not to continue a pregnancy is different, but it doesn’t change the fact that we did choose our daughter. I was devestated when she was born and seriously considered placing her for adoption because I didn’t think i could be her mother. We only left the hospital with her under the guise of a trial period. I needed to feel like I wasn’t being victimized by fate and that I wasn’t trapped. A few months later I found all the adoption information and threw it away because I was in such a different place.

    It’s interesting to hear that you view my story as glowing and inspiring because I don’t necessarily see my life as such. My life is just my life. I an pretty happy and at this point in my life, definitely fulfilled. There are no empty spaces right now, which is great. that is one of the reasons I choose to become a parent.

    The fact that you see my words as a “glowing, inspiring story” only reinforce my opinion that much of society isn’t really familiar with intellectual disabilities. Within the T21 community my life is no shock; it’s pretty average. Certainly there are people with exceptional challenges in my community, but many of us lead fairly typical lives with some extra doctor appointments and therapy mixed in. Of course, that doesn’t mean that my daughter’s extra chromsome hasn’t impacted my life because it most certainly has. I’ll be the first to admit that life would probably be easier if she didn’t have T21, but the thought of not having her in my life is devestating.

    Whether or not I knew if my daughter would be born with T21 may be the heart of your issue, but it’s not mine. My issue is the 350,000-500,000 people already living in the US with Down syndrome who are being discussed as living half lives. I don’t quite understand why it is acceptable to question the ethos of bearing a child prenatally diagnosed with T21 under the assumption that their life would be inherently less valuable (a “half life” if you will), but not important to question that the critera used to make that assumption.

    You pose a question; might I not also pose one? Or does my experience parenting a child with T21 but not being aware of her chromosomal makeup prior to birth disallow me from being involved in this discussion? I would hope that is not the case, because I believe you have not recieved a prenatal diagnosis either, correct?

    I would also hope that in all that I wrote (admittedly too much), all that you heard was that my daughter wasn’t prenatally diagnosed. Oh, and that I am glowing and inspirational – that I have got to tell my husband :)

    And yes, you are so correct. Most people who do recieve a prenatal diagnosis of T21 do not continue their pregnancies. I find myself wondering if it is because they all assume, that people with intellectual disabilities aren’t capable of leading a “full” life as if fulfillment was an objective and and consistently defined; as if the possibility of dependance somehow negates the possibilities of happiness and of a happiness unique to each life.

  • http://daybydayhsing.blogspot.com Dawn

    I was the original poster.

    All I read on the internet were glowing, inspiring stories like yours from parents.

    But did you know your daughter was T21 before she was born? That’s really the heart of the issue. Most people who find out do not go forward with the pregnancy.

    I’m sure the experience you’re having is enlightening and enriching. Did you actively choose it?

    If the heart of the issue is facing the choice to abort when carrying a DS fetus then glowing, inspiring stories from parents should be of the utmost importance and whether they actively choose to have a DS child or not is beside the point.

    An important bit of information needed in making the decision to keep or abort is whether those who have DS kids are glad to have them. Your own account of reading glowing, inspiring stories and only those seems to imply the parents are indeed very happy and fullfilled.

    Another bit of information should be whether DS people live happy and fulfilled lives. That should be looked into by getting to know people with DS.

    Anything else seems to me to be picking through bellybutton lint.

  • http://daybydayhsing.blogspot.com Dawn

    “Still, it seems to me that they are living half a life, even if they don’t know it.”

    That sentence makes me really angry.

    Because it’s an excuse not to truly take the experience and opinions of someone with Down Syndrome into account.

  • Mriana

    firstly because she isn’t T21 she has T21

    I agree with this statement and understand completely. My younger son has high functioning Pervasive Developmental Disorder (PDD) a form of high functioning Autism. He is not an Autistic. I don’t think, if such things could be known before birth that I would have done anything different. He’s difficult, yes, but I’ve also had some good times with him too. He’s also very intelligent, just awkward with social skills.

    Autism- mild or severe- is genetic also, but I wouldn’t let this stop me from having children. It was well worth the risk. However, him being born a month early could have contributed to it too.

    Either way, I can understand most people who chose to carry a child with a potential disability to term. For those of you who have difficulty with the idea, it really isn’t as bad as one may think. It all depends on what you feel you can endure.

    This is one of the reasons why I am ambiguous on this subject. I’ve also met many children with Down Syndrome too and they are very sweet people.

  • Mriana

    Author: Dawn
    Comment:

    “Still, it seems to me that they
    are living half a life, even if they don’t know
    it.”

    That sentence makes me really angry.

    Because it’s an excuse not to truly take the
    experience and opinions of someone with Down Syndrome
    into account.

    Dawn, it’s NOT half a life. These kids DO have full lives and are very happy. Have you ever met a child with Down Syndrome? To you observe their smiles and laughters or do you observe the odd facial features and various degrees of intelligence?

  • es

    I think it’s completely acceptable to terminate a defective child although I may be in the minority these days. From an evolutionary standpoint, it doesn’t make sense to bring retarded children into the world. From a personal perspective, I find it hard enough to care for a mentally gifted child. I can’t imagine caring for a mentally retarded child. Moreover, when my spouse and I die, who would care for the child? Statistically it’s unlikely to be independent.

    Abortion has all kinds of emotional baggage attached to it, but frankly in the absence of a “soul” I don’t see any major issue with it. The fetus has no self-awareness, and a limited ability to feel pain, and the process itself is relatively quick. Babies are miscarried every day – I have miscarried 3-4 times myself, to my infinite sorrow – and no one thinks much of it so why so much irrational rhetoric about abortion? Fetuses spontaneously abort primarily because of chromosomal abnormalities. All we are talking about doing is the exact same thing – terminating an abnormal pregnancy.

  • Arnold

    I understand that people with Down’s Syndrome are happy, and there is something to be said for that. They may not become doctors, but they are loving, happy people. Still, it seems to me that they are living half a life, even if they don’t know it.

    Maybe they are living the happy half of a life? Seriously though: they live a full life: their full life. Which is different from yours, not half of it. You are not informed enough about what a person with down syndrome can do nowadays. What they couldn’t do in the past was only because of society imposed limitations.

  • Darryl

    Let me play Mr. Spock (not Dr.) and be coldly logical for a moment. I throw out a few unordered thoughts:

    First, this line of moral questioning is pointless. There is no rational right or wrong answer to any such questions. People who have moral standards will make exceptions in what they judge to be extreme cases. I have a moral code that I live by, but as an atheist I know that my morality is purely my own, by choice, and has no transcendent meaning or validation. Hence, I might have to make an exception to my moral code if circumstances require it.

    Second, the world does not need more children in it, defective or otherwise. We can’t seem to care for the ones we’ve got now. You will not be committing the crime of the century by failing to increase the tally of humanity by one. No one expects anyone else to produce children regardless of the circumstances.

    Third, death is all around us everywhere, everyday. It’s a part of life. We don’t go around weeping all day long for all the death, do we? Children die every day. I am aware of this, but life goes on. Am I upset knowing that somewhere a women right now is having an abortion for whatever reasons? The only feelings to take account of are the woman’s and her family’s.

    Fourth, people who have decided not to abort and have raised defective children cannot imagine having aborted them, but this is only because they know and love them. As modern adults we know about the attachment feelings that naturally occur between parent and child. This too is irrational. Why should I care more about my child than yours? There is no good reason. We simply do.

    Fifth, the right to life, just like the right of choice, is a moral idea of our own invention. It has no justification anywhere else. If an unborn child is diagnosed with Down Syndrome, the parent has a pretty good idea of what the child’s life will be like. Does the world need another suffering child? Does the world need another burdened family? Someday we will have a genetic therapy for this malady and others–including gayness–and all of this hand-wringing will be ended.

  • Mriana

    Second, the world does not need more children in
    it, defective or otherwise. We can’t seem to
    care for the ones we’ve got now. You will not be
    committing the crime of the century by failing to
    increase the tally of humanity by one. No one
    expects anyone else to produce children regardless
    of the circumstances.

    Aw, but Mr. Spock, you know as well as I do that if every adult gave up having children and the children alive at the time of this decision made the same decision never to have children, eventually, the human race will cease to exist. We would eventually die out of existence. So, yes, we do need more children to propetuate the species. We don’t need as many of them though. In fact, if everyone in our society limited themselves to no more than two children, the population would eventually decline.

    WAIT! Before you start doing the math, I said “no more”, so theorectically some people would have no children, others would have only one. So you cannot multiply by two. You must factor in no children and one child too. Thus the population would eventually decline without the human species becoming extinct. So IF most couples had only one child, the population for the succeeding generation would be less and if you continue that pattern, eventually there would be a population decline after the proceeding generation died out.

    Thus why China has not quite yet seen a significant population decline yet. It is slow progress that way, but eventually, after so many generations, there will be a significant decline.

  • Disappointed

    Does the world need another suffering child? Does the world need another burdened family? Someday we will have a genetic therapy for this malady and others–including gayness

    If you don’t want to have a child with Down syndrome, don’t. Just because you seem to believe that mental retardation is synonymous with suffering doesn’t mean it is true. Your perspective is subjective, period. My daughter isn’t suffering…at least not yet. When she grows up and finds out the much of the world has already decided that she is suffering and defective, however, that is when she might start.

    Maybe if you had a child with T21 it would suffer. Mine isn’t. I am not burdened by her. I would appreciate it if you stopped speaking for me and reduced your generalities to the scope of your own life. Or, should I maybe begin assessing the quality of your life? Or is it only acceptable to do that to people who have mental retardation?

    I have a moral code that I live by, but as an atheist I know that my morality is purely my own, by choice, and has no transcendent meaning or validation.

    I couldn’t agree with this more. Morality is not finite, but ever evolving and determined by circumstance. The same is true of the individual’s perspective and the assumptions they make; of the assumptions you have made here as if it is a fact that people with T21 suffer and their families are burdened by their very existence. IMHO it’s pretty arrogant for you to assume to know the quality of life of another.

    As for gayness – that also is not a malady. In fact I can not believe that you would even suggest that. Let’s hope your children (or future dependants) can accept your conditional acceptance.

    If an unborn child is diagnosed with Down Syndrome, the parent has a pretty good idea of what the child’s life will be like.

    Methinks that is not always the case. You seem to not be capable of understanding what my daughter’s is like.

    Fourth, people who have decided not to abort and have raised defective children cannot imagine having aborted them, but this is only because they know and love them.

    Just as an aside, being born with what can be considered as a birth defect doesn’t make someone defective. People are not merchandise and the refer to them in such a manner is not just cold, but rather cruel. Thank you for beginning my day by reminding me that too many people only see slanted eyes when they see my daughter; that they only see wrongness and genetic errors. Thank you for depriving her of her humanity and dignity by so easily reducing her to the sum of what she isn’t isn’t.

    Am I upset knowing that somewhere a women right now is having an abortion for whatever reasons? The only feelings to take account of are the woman’s and her family’s.

    I couldn’t agree more, yet I fail to understand why you have taken it upon your self to answer a question about life quality when you don’t even believe it is relevant to the discussion. If the only significant part of the moral question are the wants of the person whom is actually pregnant, why waste our time lecturing us all about the burdens disability places on society?

  • Anon

    Disappointed,

    I truly understand that you love your daughter and that she is an incredible person.

    The issue is the prenatal diagnosis. Perhaps harping on the quality of life is not pertinent. I did a lot of research during my own scare and found out just how much the quality of life has improved for people with T21 over the years. My research did not convince me, however, that if I got the diagnosis, I could have that child. I would still terminate. I would never know a child with T21 like you know your daughter. Of course, if there were no prenatal diagnostic tests, I would have to accept whatever child I had, and that would be that. And what parent does not love his/her child? We are biologically designed to love and fight for our children. And I’m sure your daughter is amazing.

    But I’m grateful for the tests. I won’t have to make this decision–it looks like my child is “normal.” But I am happy the tests exist.

    I ask again: did you know your daughter had an extra 21st chromosome before she was born?

    The issue is not whether you love her, whether she will be happy, what she can do…now that she is here.

    The issue is that most women choose not to bring that child here. There is significant moral stigma attached to the decision to terminate that pregnancy. Yet the numbers show that most people make the decision to terminate.

  • Mriana

    The issue is not whether you love her, whether
    she will be happy, what she can do…now that she
    is here.

    You know, it is a shame that more people have not met these children with Down Syndrome. Since my son was with some when he was going through speech stim and alike in his early years (they put children with Autism with children who had downs together) I got to meet a lot of these children. They are very happy. When I substitute taught I met some of these same kids and they were still happy people and very capable of doing many things. IMHO, it is a judgement call to assume that they cannot do much and cannot be happy. This is simply not true. If you could meet them, maybe some of you would change your minds.

  • Philosopher Jeff

    Betsy said,
    November 14, 2007 at 10:38 am

    Here is a related question. Some years ago a good friend of my daughters had a baby with a serious genetic disease that would probably cause him to die before he was 20. So, what did she and her husband do? They went right ahead and had another. He had the same disease (DUH). I thought their decision was the most immoral thing I had heard of in anyone I knew personally. NOW they are divorced and she has married somebody else. So he isn’t even with her to help raise these two (possibly doomed) boys. No genetic testing, no second thoughts. She is not religious and I don’t think he was either. Just plain selfish and stupid. I guess the question is why in the world do people do these things?

    I enjoyed reading most of the comments left regarding the post. But this one was very dissappointing because it was so judgmental. It must be very comforting to be so full of self-righteousness.

  • Philosopher Jeff

    Mriana said,
    November 14, 2007 at 9:40 pm

    Autism- mild or severe- is genetic also, but I wouldn’t let this stop me from having children. It was well worth the risk. However, him being born a month early could have contributed to it too.

    Pervasive Developmental Disorder (PDD) is one category of Austism Spectrum Disorder (ASD) just like Asperger Syndrome. The consensus is that genes may be part of the cause of ASD, but mostly likely it is a combination of genetics and environmental conditions. It definitely can not be assumed that ASD is a genetic disorder like Down Syndrome.

    I have a son with Autism and Cystic Fibrosis (CF). I also have another son with Asperger Syndrome. If I had known how affected my son with Autism/CF would have been, I and my wife, would have wanted the pregnancy terminated. As for my son with Asperger, I would not have wanted his pregnancy terminated. I would not terminate a preganancy over CF.

    Anyone that thinks that terminating a fetus with Down Syndrome is always an absolute yes or no answer has no clue what they are talking about. ASD, Down Syndrome, and many other disabilities affect each individual uniquely. It may seem easy to decide upon seeing how the child turned out, but it is far from easy when trying to guess the future. My heart goes out to any parent faced with such a difficult decision and to all parents that raise a severly disabled child.

  • Mriana

    Is partly genetic and we have others in our family that had High functioning Autism too, so one can’t tell me it is not genetic, BUT I will concede it is not like Down Syndrome. Even so, if I had known a head of time that he would have a form of Autism, I would not have aborted him. He also has a malformed bladder, which he was born with, among other issues. Even so, I’ve been as happy as any parent could be with their child.

    Betsy said,
    November 14, 2007 at 10:38 am

    Here is a related question. Some years ago a good friend of my daughters had a baby with a serious genetic disease that would probably cause him to die before he was 20. So, what did she and her husband do? They went right ahead and had another. He had the same disease (DUH). I thought their decision was the most immoral thing I had heard of in anyone I knew personally. NOW they are divorced and she has married somebody else. So he isn’t even with her to help raise these two (possibly doomed) boys. No genetic testing, no second thoughts. She is not religious and I don’t think he was either. Just plain selfish and stupid. I guess the question is why in the world do people do these things?

    I don’t think it is selfish at all. You don’t know how these kids’ lives are. Those few years maybe very valuable to them.

  • Julie

    You are correct on the 90% rate for termination. As a parent of a child with Down syndrome, and a Board member on a local Down Syndrome Association I know that number pretty well. As long as the law allows for the choice of abortion, then no matter what someones personal stand on it is, your choice is legal, and yours to make. I am happy my child’s birth mom did not abort. He rocks !

    Most people feel as you do when given the news of the possibility of Down syndrome. It is natural to fear what they do not know or fully understand. Everyone assumes the worst case scenario in any given circumstance of the unknown. Find a lump in a breast and see how fast you conclude it is cancer and you are doomed to a mastectomy! Fortunately your chances are pretty good that it will turn out to be no where near the place your worst fears took you to in your thoughts.

    We now screen for Down syndrome on all pregnancies like it is the plague (it isn’t). Prior to a year ago, it was only on moms over 35. What is next? Diabetes? MS? What other genetic conditions do we decide we do not want to live with?

    I hope that you have a wonderful pregnancy that is uneventful, and your baby is born without complications.

    All the best to you and your family.

  • smcelwee

    Dear Hemant,

    I have a son with Down syndrome, and NO I didn’t have a prenatal diagnosis, but after living 14 years with him I can only tell you his BIGGEST handicapping conidition is PREJUDICE.

    And PREJUDICE begins before birth with the misinformation about the abilities of MOST people with Down syndrome…just as in the ‘typical’ population there are variables.

    I can tell you that while several of my friends were certainly relieved that it happened to ‘me’ and not them 14 years ago, TODAY I am relieved that is IS not ‘me’ that is dealing with a child adicted to drugs and unwilling to attend a treatment program. Sadly the ‘brilliant’ mind of my friend’s child has been reduced to much more disabled than my son who happens to have an extra chromosome.

    There is Much to consider when reproducing at all. Too much to ponder here.

    The U.S. Began the Eugenics movement in the 20′s with sterlizing ‘imbecels’ so they wouldn’t reproduce more ‘imbecels’…Adolph Hitler took it one step further by gasssing them, and others (Jews, gypsies, etc) that he also considered inferior…it makes me very sad that in 2007 we are carrying on Hitler’s Legacy.

  • My problem is not how I look, it’s how you see me

    Disappointed wrote:

    “As much as I gave birth to her, she gave birth to me, and I am so, so grateful for that.”

    This is the truest statement I have ever read about DS and also seems to be the best kept secret or perhaps the one everyone is least willing to believe is TRUE. I also think the opposite is equally true- if you kill a child because of DS, you are also killing yourself. It is human nature to nurture and protect our children, a child who is starting with any type of disadvantage needs that parental and societal nurturing even more. It does humans GOOD to do good, and it only harms us to destroy the less then perfect among us because none of us are perfect, and in judging another’s imperfection, we are judging ourselves as well. In accepting another’s imperfection, we accept them in ourselves. Diversity makes us stronger and diversity pertains to people with disabilities as equally as it does to other minorities.

    Discrimination is discrimination and you are all are very prejudiced against people with DS in particular and disabilities in general. You all sound like white supremacists talking about African Americans a few years back! The ignorance about DS being set forth as truth here is unbelievable in the year 2007! It just plain hurts. I now have a very intimate understanding of anyone who has experienced discrimination based on physical attributes.

    I dare say my 7 year old daughter with DS lives a fuller life then some of her 6 sibs do!! She is involved and fully participates in more activities than any of my other kids did. She never lets a moment slip through her hands! I have never known another human being that loves life and does more, or has affected more people than her. She has brought out the best in people, which is more than I can say for myself. She genuinely LOVES people and seems to have a sixth sense about what they need. They are what keep her going. Little does she know that they can be so evil minded towards her. It breaks my heart to know that someday that innocent love of hers will be shattered with the fact that people like you so openly dismiss her very life and right to simply be here. Words could never express the deep pain experienced in reading this blog. What you are saying is simply cruel beyond my comprehension.

    I was one of those people who spent a good amount of my time in front of abortion clinics offering help and alternatives. I certainly have had people tell me I would abort too if faced with a disabled or ill child. I wish I could go back and tell them all that I was true to my word. I declined testing for the past THREE pregnancies and had to sign a waiver letting the Drs off the hook in the event the child was born with a disability.

    Also for the record- my daughter was born with 2 major heart defects that required lots of medical intervention. She was given a 50/50 chance of surviving her first year. She has had 2 major surgeries ( so far- more will be needed) and a host of other minor, in comparison, medical issues that cost a ton of money, a ton of time, lots of hospital stays and we as a family had to stay away from other people for about a year!! Burden??? No one here thought so. It’s the stuff this country was built on- inner strength, fortitude, love of your neighbor, sacrifice for the good of others… thing this world seems to have forgotten, and to our detriment. Strong people are not born, they are made through dealing with hard times.

    And no one fought harder to stay alive and be healthy than my daughter. And no one had the strength she had to get through all of it. I would like to say that I was the strong one and got her through, but the opposite is true. She wouldn’t allow me to feel sorry for her, or myself. Many of us think that we will be the ‘hero’ and help the person with the disability when in fact, it’s the person with the disability who is the stronger one and ends up helping and teaching us.

    You all have simply not been enlightened enough to see that. And that would be fine, if only you did not assume you have the moral high road to chose whether another lives or dies based on your own ignorance.

  • http://literaghost.blogspot.com/ literaghost

    …it makes me very sad that in 2007 we are carrying on Hitler’s Legacy.

    Okay, that’s enough. I call reductio ad Hitlerum.

    My thoughts on it – personally, I think it’s wrong irresponsible to knowingly bring unwanted children into the world. When people choose to have children, it’s by and large because they want to have them – financial conditions are right, settling down, etc. Even after the kid’s born, the parents make most of the decisions (What should Johnny wear today? Should Johnny eat apple sauce or strained peas for lunch? What vaccines should Johnny get?). And, yes, children – any children, especially those that would require special care and/or treatment – are a very large responsibility. So if the parents feel they couldn’t (or even wouldn’t want to – yes, they have lives and feelings too, you know) take care of the child physically, financially, and emotionally…it seems best for both parties, in my opinion.

    [Boom...dropped a bomb?]

  • gc

    “I ask again: did you know your daughter had an extra 21st chromosome before she was born? ”

    OK – I fit this all important criteria…

    At my ultrasound the heart defect was discovered. The office went into a “frenzy”. Being first timers, my husband and I were so scared. There was a sense of urgency… this is a marker for DS, we can do the amnio NOW! We were never asked what we would do with the information… just DO IT NOW! We never realized it was so we could make a “choice”. We did the amnio, and it was positive for Down syndrome. We informed the doctor we didn’t find out for a “choice”, we found out to know – you made us feel we HAD to KNOW!

    Given a chance to breathe, mourn the child we thought we’d have, cry, discuss, research, and meet a few people we had renewed optimism in time for our first (and last) appointment with a genetic counselor. All of our good information was shot down, and we were filled with a grim outlook for our childs life. We decided we were best left finding our own information.

    My daughter had a rough first year – and so did I. It was HARD! But it is what we got, and we made it through. Those days are behind us and now our days are pretty “normal”. Like “dissapointed” our days include gymnastics, school, and a few more appointments for our first child than our 2nd. But physical therapy includes horseback riding… so cool! She loves it, and she’s GOOD! I expect rough times ahead – especially when my daughter realized that people see her as different and judge her for it without knowing her. I expect that will be the hardest part. But I also anticipate a full life with lots of opportunity for her. In fact we are already seeing it.

    As for me – I am not a christian, I had an abortion in my early 20s which still felt like the right thing for me at the time. But when I got pregnant with my daughter, I set out to get pregnant. I can’t choose what I get from that – same as none of you can choose whether or not your “healthy” or “normal” children will not become disabled when they are older, or addicted, or anything.

    The “choice” is personal, but the big shame in all of this is that too often a large portion of that 90% make that choice based on urgency, fear, and misinformation, which frankly, I have read a ton of in these postings.

  • Julie

    This topic seems to come up every couple of months in one form or another. Buyers beware, it can get very heated on both sides, atheist or not. So keep an open mind as you prepare yourself for many views on the subject.

    I understand we are using Down syndrome as a reason to abort a child, but there are many other conditions that can cause health and intellectual impairments for unborn children. Should we come up with a flow chart or a hierarchy of disorders that will help us decide which are ok to keep and which are not? Just a thought, not a condemnation.

    Let me share my story.

    My husband and I were high school sweethearts who, after graduation, gradually lost touch because he went into the Navy and I went away to nursing school. We found each other 20 years later, instantly in love again and ready to add to our family. We were soon pregnant and were introduced to the world of cystic fibrosis (cf).

    Cf is a genetic condition that is passed on when each parent is a carrier of the cf gene. Think of sickle cell anemia. Different disease, same idea. Cystic fibrosis affects your lungs by producing very thick mucus which block the airways, makes it hard to fight infection, and hard to breathe. It affects other body systems too, like digestion, but the breathing function problems are the most debilitating and usually lead to an early death.

    During a routine prenatal screening, my OBgyn informed me that I was a carrier. I was literally shocked and amazed. The doctor told me not to worry, just bring my husband by for testing, he was probably negative (famous last words).

    Of course, he turned out to be a carrier as well. Neither one of us even had a clue what cf was nor what it meant to be a carrier, a surprising notion coming from the fact that I was a nurse. We found out that even though we were carriers, the baby only had a 1 in four chance of being positive. The breakdown was, one possibility of cystic fibrosis, two possibilities the child would only be a carrier and one possibility the child would not be affected. I am not going to go into a deep explanation. You can Google it if you are interested.

    Like I said above, we did not find out our status until we were pregnant with our daughter, Phoebe. We learned what we could about the disease and spoke to as many people we could. My OBgyn was very supportive and told me that with all of the genetic testing going on today, he was positive in his heart of hearts, there would be a cure or even a way of dealing with this condition in my child’s lifetime that would allow them to lead a full life.

    I am not ashamed to admit that earlier in life; I had been faced with the abortion choice years before this pregnancy and, at that time, was mostly persuaded to go ahead with it. For me, it turned out to be one that I should not have made hastily and I had a very hard time living with the fact that I did abort many years ago. Not ready to go through that again, we decided to take our chances and go ahead with the pregnancy. Since we were not changing anything, no further testing was done.

    Phoebe was born on December 13th with cystic fibrosis and Down’s syndrome, a very rare combination of disorders. We also have a son, Nolan. He is four and is from my previous marriage, who’s father died when he was just a few months old. He is not affected, nor is he a carrier.

    Lest you think this will be a post to preach hate and condemnation against those of you who support the abortion idea, think again. There are just as many on the other side of the fence, who have judged me for continuing a pregnancy that a child would be born ill.

    So the question arises, should we be allowed to have more children knowing our carrier status?

    We are happy with our family the way it is, but, if we were blessed with another child, we would consider it a gift. About a year and a half ago, we found out we were pregnant. I was worried what everyone would think and how we would be judged for “letting this happen”. But I also realized those naysayers were not the one’s who would make any difference in raising my child. It was our family, and our child, and we would handle whatever needs that would arise, no matter what. Unfortunately, we lost that pregnancy and it was hard.

    We were not then, and are not now, actively trying to get pregnant. Mainly because we pretty much our hands full right now. I am also very close to menopause, so it is highly unlikely (but not impossible), that we would have a spontaneous pregnancy. Although, we have seriously discussed adopting a baby with special needs such as Down’s syndrome or even cystic fibrosis.

    We have found that there are many, many babies in other countries that are placed in institutions because their parents just do not have the mean’s to give them the special attention they need. Phoebe has taught us so much about strength and joy, that we would love to bring in another special angel into our life to join the ride, even if they had cystic fibrosis.

    Would it be hard? Absolutely, but parenting is hard anyway, no matter who you are. People have questioned why have another baby with cf who will suffer and die an early death. My first thought about that is, no one has any guarantees how long their children will be with them, but also, we try not to let doom and gloom overshadow the beautiful lives of everyone in our family.

    Phoebe has taught us many things about life, with one of them being– Do not waste your sunny days with me worrying about when I am going to die or when I am going to be ill. Let’s enjoy these days with everything we have, right now!

    I sometimes forget these important lessons, but my young professor of life, Phoebe is never far away, reminding me to take it easy. Every one of us in our family still get sad sometimes, and we even cry thinking about what might be taken away too soon. I guess it just reminds us to get back to basics, cuddle and give each other hugs with lots of love. However, I try very hard not to feel sorry for Phoebe, no more than she feels sorry for me. She is a sparkling light of our lives that we would never, ever give back, or wish she was not born.

    I try not to condemn others who feel differently, but have been guilty of getting overheated when someone else seems to have views that are against mine. We are human, it happens. In the end, we are the ones who have to live with our choices. I have made many bad decisions in my life and have tried to learn from them. Nevertheless, in the end, atheist or not, I do not think that ‘love’ or choosing to ‘love one another’, is ever going to be a bad decision. Isn’t it funny how the meaning of life can be boiled down to something so simple?

    A couple of things to ponder on this topic:

    1. If you abort a baby with Down syndrome and continue with what you think is a normal pregnancy, are you prepared to face the possibility of a baby being born with a different condition, not tested for, that could prove to be much more debilitating?

    2. Have you considered other childhood conditions, occurring after your child is born that happen without your control that can produce symptoms equal to Down’s syndrome or worse? Will you throw away a live child at that point?

    3. Should you abort a child with a genetic condition, and a cure is found years later, can you live with that decision?

    4. Wanting to preserve your morals, ethics, and pass them on to your children, are you prepared to explain to them your thoughts? Are you prepared for the realization that your children will come to know that if they were not born perfect, you would have rejected them too? Again, not a condemnation, just a thought.

    One final thought. In my own life, I am often surprised when faced with a difficult situation how the actual situation is dramatically different from my perceptions. More often than not, the opportunities that have arisen out of my so called ‘horrible situations’ are more rewarding than any I could ever dream up. I understand the need for control, but I now realize that trying to control my own situations to ensure perfection is a huge recipe for disaster. Life is about learning and growing, not just existing in a controlled environment until we die.

    Go out, live a little, and you will surprised who you will meet along the way.

  • Karen

    Some absolutely excellent posts on this thread, and wonderful discussion.

    I think like all decisions about abortion, whether to continue a pregnancy when you know there’s a disability is an intensely, intensely personal thing. I fortunately did not have to face such a decision, but I am very glad that I did have the freedom to choose had I gotten such news.

    There’s no doubt that all/most parents will love and adore any child they bring into the world, whether perfectly formed or suffering from some congenital defects. So I’m not at all surprised to hear the parents of Downs or other children say that their lives are richer and more fulfilled because they continued with a pregnancy that had an early diagnosis.

    On the other hand, there are many people who know themselves well enough to know they could not handle the many years of sacrifice and the extreme expense of raising a disabled child. Some may not want to subject their other children to this situation, which is demonstrably tough on healthy siblings. Still others will be loathe to bring a child into the world knowing that it will have to have long and painful treatments, hospital stays and perhaps surgeries. That’s a lot for a little child to bear, and it may be seen as needlessly causing suffering.

    Just raising healthy, independent children requires a lot of self-sacrifice, and not everyone has that in them, let alone the extra measure of sacrifice required for a special needs child.

    Julie, having seen the ravages of CF close up, I would have had my tubes tied in your situation. However, your point about how we’re all human and have to live with our own decisions is a good one. This bit, however, surprised me:

    Have you considered other childhood conditions, occurring after your child is born that happen without your control that can produce symptoms equal to Down’s syndrome or worse? Will you throw away a live child at that point?

    Are you equating terminating a pregnancy with killing a live child? Surely you see that there’s a huge difference between the two situations.

  • Julie

    Response to:

    Are you equating terminating a pregnancy with killing a live child? Surely you see that there’s a huge difference between the two situations.

    I am aware of the difference, but I do wish there was not. I was simply trying to emphasize my point.

  • Mriana

    I support those who made a choice to keep the baby, even though s/he had a disability. It takes a lot of guts to raise a child under such conditions.

    This is not to say I don’t support those who chose to abort a child with a disability. They might not have thought they could do, because like I said, it does take a lot of courage to raise a child with a disability.

  • MY

    I have a 5 year old girl with Down syndrome. I didn’t know she had Down syndrome before she was born and I’m very happy I didn’t becuase I probably would have aborted. I didn’t know much about Down syndrome before she was born and what I *thought* I knew was wrong therefore I would have aborted based on misinformation and stereotypes.

    My daughter is in Kindergarten in a regular class and does most of what the rest of the class does though she can’t write and her speech still lags. But she can play, do circle time and listen to stories with the best of them OH and she knows sign language which many of her typical 5yo peers don’t know.

    I don’t judge anyone who decideds to abort but I have to wonder how they would handle some of the other challenges that can come with raising a child.

  • Teresa Koch

    I’m not even sure where to start. When we found out that we were (surprisingly) pregnant with our 4th child at the ripe old age of 40, we were faced with a choice – whether or not to have any genetic testing done. My husband and I are both Christians – he is pro-life and I am pro-choice – but we knew that we didn’t want any pre-natal testing done. For my husband, it was because he knew that he would not want to terminate any pregnancy; for me it was because – despite saying for years that I PERSONALLY could not imagine terminating a pregnancy, regardless of my pro-choice opinion – I didn’t want to be faced with the possibility of having to make that choice.

    The pregnancy was blissful – our 3 daughters took great delight in watching Mom blow up like a balloon – and my husband and I were like 2 kids. We had a wonderful time, and we wouldn’t change a thing. Two hours after Rebecca was born, we were informed that she had Down syndrome. It was absolutely devastating news, mostly because we THOUGHT we knew what that diagnosis meant. Boy, were we wrong! In the past 6 1/2 years, we have learned more about what life is REALLY supposed to be about. All of the things that we have been told about the kind of life that we should strive to live- not just as Christians, but as human beings – is exactly the kind of life that our daughter is living every single day.

    I am glad that we didn’t know ahead of time that Rebecca had DS, but I have met many parents who were faced with that choice and to me that would be much harder than the way we found out about it. We certainly don’t look harshly on families that do decide to terminate a DS pregnancy, because we know that it is a very hard thing to face. What we do know is that children with DS are the parenting world’s “best-kept secret” and if everyone knew how much FUN it is to have a child with DS in a family, they would all be beating down their OB’s door demanding to have one, too! We have also been fortunate, indeed, to discover what compassionate people our other children are – something most parents don’t get to see until their children are well into their 20′s or 30′s.

    As far as “knowing” ahead of time that a child is going to be “different”, well, I can honestly say that I never imagined that Rebecca would be where she is today. I can also honestly say that I never imagined that any of my other girls would be where they are today, either. The truth is that none of us knows what the future holds for any of our kids. What I do know is that 2 months before Rebecca was born I received a phone call from the sister of my best friend in high school, telling me that my friend’s 18 year old son had been killed in a car accident. What I do know is that I stood by my friend as she said goodbye to her oldest child while I was carrying a new life in my body. What I do know is that 2 months later, regardless of how overwhelmed I might have felt after receiving Rebecca’s diagnosis, at least I had a child that I was able to hold in my arms. What I knew most of all was that Rebecca had Jonathan’s blue eyes, so I knew that she was going to be OK. When Jonathan was born, my friend didn’t know that he would only be here for 18 years. If there were a test for that, I wonder how many families would decide that they didn’t want to have to be faced with that eventuality – it’s just something to think about, I guess.

    Sorry to have gone on so long – today we are faced with choices that can sometimes be double-edged swords. Thank you for sharing your experience; I am glad that you weren’t faced with having to make that choice. If you ever are faced with it again, I know that you would be surprised to learn that there is actually a waiting list to adopt children with DS (I was!) – I can think of no better indicator of how much such a child can add to a family!

    Best wishes to you and your family.
    Teresa Koch
    Fort Worth, Texas

  • Leylah

    We tested and had ds markers with our second child. I had run group homes for developmentally disabled adults for many years and I worked with people who had been institutionalized, I worked with people who were “worst case scenarios,” didn’t have real jobs or live on their own. Those same people were also happy, social, engaged and smart enough to have wicked senses of humor. My husband and I thought long and hard about those test results and in the end, for us, it came down to the fact that life is a crap shoot. We wanted a child, this child was showing up with her cards on the table, she was going to have challenges in her life. We could have aborted, but we wanted a child and who was to say we wouldn’t then end up pregnant with another genetically different baby? Or who was to say that we wouldn’t have ended up with a “healthy” child who later developed autism or fell and sustained a traumatic head injury? There are no guarantees no matter how the tests results turn out. We went forward and ended up with a perfectly healthy child with an extra 21st chromosome.

    Abortion for any reason is a very personal decision and I would never presume to dictate that decision to anyone. We had a couple call us to ask us about our experiences with having a child with ds and I will say I did not like the feeling of being put on the scale to balance out the question of a child’s life. They decided to abort and I support their right to choose that even though it took me awhile to get to the realization that their choice was not a judgement on my decision or my child.

    That said, I too take great offense at the way many of the posters, and the op, have equated IQ with happiness and worth. I have known many people who aren’t very bright, who have worked dead end jobs, have enjoyed hobbies that I consider silly or childish. They have told me that they are happy, but should I believe otherwise because they weren’t smart enough to graduate from school? Or because they are content working as a file clerk or delivery person or even stocking shelves at the drug store? Does a person’s having a lower IQ score give us, give society, the right to devalue them and assume that their life and their happiness is any less valid than our own?

  • Annoyed

    I am not sure when it became okay in today’s society to cast such judgmental innuendo’s.

    I should say at the onset that I have a child with Ds.

    Maybe then I might mention that I am adamantly pro-choice, held the sign kind of pro-choice. Not very religious although I do make it to church on those special occasions like x-mas, Easter, funerals and weddings.

    Maybe again, I might say that my family is academic to the extreme, intellectual prowess is one of the most admirable of traits in my family. Probably the most admired.

    I had a definitive prenatal diagnosis.

    My choice was to parent a child with Ds.

    I know that I don’t fit neatly into any of the squares that her preconceived notions allow her.

    What I find most annoying about the OP was that she thought she had some kind of “vision” into the life of a person with Ds.

    No doubt she will encounter a person with Ds working amongst each of our individual community’s and find justification in her thought process.

    Perhaps it is the person with Ds at the med center who clears tables. That person must be living a “half-life”, while dismissing the person beside him/her that is doing the same thing because they don’t live their disability on their face. Although in all honesty I doubt she sees them at all…

    Or maybe it is the person who works in her child’s day-care program, thinking that individual did not receive the same accreditation that her co-workers received, only to find that she was wrong on that account as well.

    Perhaps it is the disdain she sees when she looks at the couple who are newly married, both having Ds and maintaining their independence.

    Maybe it is the person with Ds who drives. I wonder if she thinks those roads are only made for people like her.

    Could it be the people who have attained regular diplomas from regular University’s that puts her ire on edge….

    I know, it is the young woman who is one of 10 people total that swam Tahoe (not people with Ds but people in general), that must be it…

    OR, maybe just maybe, she just didn’t want to parent a child with Ds. And frankly, I don’t have any problem with that providing it was framed that way.

    But to suggest that my daughter and her peer-group “suffer” because of their chromosomal make up is a bit near sighted.

    And frankly, I do have a big problem with her spewing her many mis-informational opinions as truth.

    Sincerely,
    Mother to child with Ds
    whose life is her own to make what she will with it.

    As a side note I wonder if she knows that
    You should be aware of the life-long difficulties facing women who terminate a pregnancy for Ds. There are many studies that suggest that a substantial number of the participants showed pathological scores for posttraumatic stress. Advanced gestational age at TOP (termination of pregnancy) was associated with higher levels of grief, and posttraumatic stress symptoms. Higher levels of grief and doubt were found if the fetal anomaly was presumably compatible with life.

    At 4 months post TOP, almost half of the women showed high level signs of Post Traumatic Stress Syndrome as well as a significant number of men.

    After 2 years, many of the women still complained of regular bouts of crying, sadness, and irritability. Husbands reported increased listlessness, loss of concentration, and irritability for up to 12 months after the TOP. In the same period, there was increased marital disharmony in which frequently the couples separated. Physical symptoms such as palpitations and panic attacks were reported by those under 25 years of age.

    Conversely, women who had experienced a miscarriage had more mental distress at 10 days and six months after the pregnancy termination than women who had undergone an abortion. However, women who had had a miscarriage exhibited significantly quicker improvement on IES scores for avoidance, grief, loss, guilt and anger throughout the observation period. Women who experienced induced abortion had significantly greater IES scores for avoidance and for the feelings of guilt and shame than the miscarriage group at two and five years after the pregnancy termination.

    Many of us have heard of the term Post Traumatic Stress Syndrome but not all understand the implications of PTSS. Symptoms can be very debilitating depending on your own level of PTSS symptoms include

    flashbacks” about the traumatic event
    feelings of estrangement or detachment
    nightmares
    sleep disturbances
    impaired functioning
    occupational instability
    memory disturbances
    family discord
    parenting or marital difficulties

    The consequences of PTSD for both the afflicted individual and society are significant. For example, studies have shown that patients with PTSD will have an increased number of suicides and hospitalizations. Also, patients with PTSD will have financial, and health problems, an increased frequency of alcohol abuse and drug dependency problems.

    Most significantly, one third of PTSD patients will have related symptoms 10 years after the trauma. The majority of these people will also suffer from other psychiatric, marital, occupational, financial, and health problems.

    Oh and by the way, parents of children with Ds have lower divorce rates than those of the general public, as well as those who parent children with different disabilities.

  • Annoyed

    Oh, and by the way, parents of children with Ds have lower than average divorce rates than those in the general public as well as those who parent other children with disabilities.

  • Annoyed

    OH, and by the way. Parents of children with Ds have lower divorce rates than that of the general public, as well as those who parent children with other disabilities.

  • Julie

    I am posting a very interesting article here that has some religious content, but more importantly contains some very poingniant factual information. All I ask is that everyone on both sides read the article in it’s entirety to listen to it’s point. You do not have to agree, but at least keep an open mind.

    Defender of the Little Ones

    Something very unusual happened at a Special Olympics for those with a learning disability. Two sprinters, both of them suffering from what is called Down’s Syndrome, raced side by side. One of them pulled away, then suddenly stumbled and fell. His companion stopped, lifted him up, massaged his knees, embraced him. Together they shared podium honours. Emotion swept the stands. Spectators had been given a lesson in love.

    Down’s Syndrome participants focused on one particular spectator. They smothered him with embraces and kisses. They emblazoned him with their golds, silvers and bronzes. He was the man who had defended their dignity, given them a new name and identity, discredited ‘mongolism’ and ‘Down’s Syndrome’ with their racist connections. The former term came from the belief that their physical appearance denoted a link with the inhabitants of Mongolia. The latter term commemorated the mid-19th century Sir Langdon Down, apparently a believer in white racial superiortity, who described the handicap as “mongolian idiocy”.

    The hero-spectator was Jerome Lejeune. He was born in 1926 in Montrouge, Hauts de Seine, southwest of Paris. Much of his early education came from his father, a vet by profession and a man of both a philosophic and practical bent. Jerome graduated in medicine at the University of Paris. His hospital experience evoked a compassionate interest in children affected by mongolism, as it was called. He noted both their ‘head’ (their limited intelligence, especially in abstract subjects) and their ‘heart’ (their affectionate nature). What had genetics to say about them?

    He began a meticulous research. Assisted by Raymond Turpin and Marthe Gauthier, he focused on chromosomes, the rod-like cell-carriers of genes, arranged in side-by-side pairs. In 1956 Tjio and Leven had established that in most human beings each cell had 23 pairs, ie 46 chromosomes. Early in 1959 the ‘Paris Three’ announced the discovery of a 47th chromosome, physically identical with the 21st pair, in ‘Down’s Syndrome’ children.

    This seminal discovery of ‘trisomie 21’, as he called it, gave new impetus to genetics research by Lejeune and others and made the traditional names with their racist nuance obsolete – though rather regrettably Down’s Syndrome survived in Anglo-Saxon circles. It also gave him a doctorate in science and an international reputation. He never discovered a way of preventing the trisomic condition but he did develop treatments that improved intelligence and actvity. His research extended to thyroid and amino-acid deficiency.

    In Paris he ran a free consultancy (even after it lost state funding). He became a legend of one-to-one compassion and respect for human dignity to the parents and children who came there from various countries. He worked for several years in the US, where he was a member of the American Academy of Arts and Sciences and received the Kennedy prize from JFK himself. Genetics also brought him to Russia, Israel, Chile and Japan. (He was much taken by the Japanese word for ‘womb’: shi-kiu: ‘infant’s temple’). He worked with a UN committee on congenital abnormalities. In 1974 Pope Paul VI made him a member of the Pontifical Academy of Sciences. In 1982 he was elected to the French Academy of Moral and Political Sciences.

    Along with all this he had a family life deeply and openly imbued with Christian faith. He was married to Birthe Bringsted, a Dane, whom he had met in student days. She shared and supported his values and interests. They had five children. They lived in Paris most of the time but also had a house in the countryside south of the city. His sojourns there were precious to him for relaxation, appreciation of life in nature, as well as prayerful and scientific reflection. This pattern of family faith and fulfilment must surely have helped him in the war he waged during his later years: the defence of human life against abortion and other anti-life procedures.

    He realised that the great chromosome discovery would be misused in a ‘search and destroy’ technique for the aborting of trisomic babies. This danger and his mission to fight it came poignantly home to him when a tearful trisomic youngster flung himself into his arms and begged him to defend those like him still unborn. He told his genetics team: “I am going to undertake the duty of speaking publicly in defence of our sick…If I do not defend them, I betray them, I renounce what I have de facto become: their natural advocate.”

    He was the leading light in establishing the World Federation of Doctors who Respect Human Life (from conception to death), Chairperson of Laissez-le Vivres (Let Them Live), President of the Society for the Protection of Unborn Children. He set up ‘The Houses of Tom Thumb’ for mothers tempted to abort because of materially difficult situations. He became a brilliant defender of human life on platforms, television and radio. Too brilliant for some; after one television programme, his wife overheard a studio executive say to a subordinate, “Lejeune? That swine! But what talent! He’s too good. Don’t invite him again.” Other forms of opposition included threatening graffiti, harassment of patients and labelling of them as ‘monsters’ and disease-carriers, the attempted wrecking of meetings.

    What saddened him immensely was the abandonment by so many doctors of their pro-life oath-bound Hippocratic ethos. At an international medical conference on health in New York which was favouring the legalisation of abortion, he did not mince his words: “This Institute of Health in an Institute of Death.” That evening he wrote to his wife: “This afternoon I lost my Nobel Prize.”

    He was an adviser and informant of Pope John Paul II on genetics and related issues. They became real friends; to John Paul he was “Brother Jerome”. When in Rome he was the Pope’s guest at table and private morning Mass. He and his wife lunched with the Pope only hours before the assassination attempt on 13 May 1981. Later that year John Paul sent him with another scientist to Moscow to warn the Soviet supremo Brezhnev of the disaster nuclear bombing would be to the human race.

    It is very likely that he influenced the text of ‘The Gospel of Life’, which is perhaps John Paul’s greatest encyclical. Here and there in the section about abortion the very strong words of the Pope seem to echo those of Lejeune in his pro-life crusade: an expression perhaps of the remarkable convergence of mind that united them in friendship. In 1994 John Paul made ‘Brother Jerome’ first president of the Pontifical Academy of Life. The Pope knew that Lejeune was dying of lung cancer. The appointment was a farewell accolade from one great Christian humanist to another. He was president for 33 days. His ‘little ones’ were in his mind to the end.

    He died on Easter Sunday, 3 April 1994. Many, including the Pope, saw a ‘sign’ in that this great apostle of life departed on the great feastday of the Lord of life. Notre Dame de Paris was packed for the funeral Mass. The officiating bishop read John Paul’s message in which the Pope thanked God for ‘Brother Jerome’, praised him for all he had done for human life and dignity, called him an ostracised ‘sign of contradiction’ in a permissive society and warned of the organised culture of death that menaced the unborn, the aged and the sick.

    But the speaker who impressed most was the trisomic Bruno who had been one of the children involved in the famous discovery 35 years previously. He spoke of Lejeune from the heart and spoke to him as to a friend still present: “Thank you, Professor Lejeune, for all that you have done for my father and my mother. Thanks to you, I am proud to be me. Your death has healed me.” It was a testimony that Jerome Lejeune had lived up to what could be called his ‘mission statement’.

    “Only one phrase will dictate how we behave: the argument that does not deceive and that from elsewhere judges all; the very word of Jesus: what you have done to the least of mine, you have done to me.”

  • Julie

    I have a request for the OP. She indicated in her post that the markers found about her unborn child were simply a “scare” and she did not have to make thedecision to abort. I would ask her to please let us know how much further she has to go in her pregnancy and when the baby is due. I genuinely care about how she is doing and how the baby is doing.

    Can you let us know?

  • http://www.ohthethinksyoucanthink.blogspot.com Linda

    Okay, again, I was going to stay out of this one, but my lack of self-control strikes again… :(

    All we are talking about doing is the exact same thing – terminating an abnormal pregnancy.

    Although I am pro-life for myself, I fully support that everyone should make their own choices without any fear of judgment.

    The only thing that I have a problem with is that they are not honest enough to call it a selfish act. When it comes down to it, ultimately, it IS a selfish act. Don’t try to justify it by saying that you’re doing it for the sake of that child. Just call it like it is. I have no problem with people being selfish, as I, too, am often selfish. I only have a problem with people trying to disguise it as something else.

    And Disappointed,

    I applaud you, admire you, and have great respect for your courage. Your daughter is truly blessed to have you as her mother. And you’re a very gifted writer. Please continue gracing the world with your voice… :)

  • http://ohthethinksyoucanthink.blogspot.com Linda

    Polly,

    I missed what you said before I posted my last comment. I guess you’ve already made a similar point.

    I don’t think anyone can accuse someone of being selfish for not wanting to care for a disabled person all their lives – that’s unconsionable and whoever says that should rescue/adopt a DS baby. But, it sounds like a flimsy excuse to say it’s for the child’s good. It’s not. If you would’ve aborted, then do so. But, don’t make excuses.

    I don’t accuse anyone of being selfish either. Whatever they decide is their choice, and it’s not my place to judge. But if that were to be my choice, it would be for selfish reasons. Because I would be (to use a phrase from another post) chicken shit to face what comes with having that baby. I have my life and my goals, and I wouldn’t want something like that to alter it completely. My life as I know it would bascially be over at that point, and who would actually “choose” that? So I hope I would have enough guts to just admit to my frailties and say, “I’m too chicken shit and selfish to carry this pregnancy to term. And adoption is not an option, because I don’t want to have to justify and defend myself against the people who would judge me for that, not to mention the guilt I would feel.” That’s just me.

    Having said that… in my faith, I hope against all hope that if I were to ever face a situation like that, I would somehow be able to find enough courage to say no to SELF and say yes to what God puts in my path.

  • Lisa

    The quality of life seems impaired, no matter how you look at it. I understand that people with Down’s Syndrome are happy, and there is something to be said for that. They may not become doctors, but they are loving, happy people. Still, it seems to me that they are living half a life, even if they don’t know it.

    Are you kidding me? I really shouldn’t have read this after eating.

    And yes I knew he had tri 21!! Half a life? Wow!! Ignorance!!
    Lisa

  • In support of Disappointed

    As an athiest/humanist I believe in the power of people to shape their own destinies and the world in which we live. That means getting all the information, and getting factual information – not misguided information based on prejudice. I too am concerned for women who are given false information about ‘half a life’ and ‘terminal conditions’ and then go on to terminate pregnancies that could have led to great happiness for them and for their children. What about the women who suffer depression after making such a difficult choice? What about those who never feel able to think positively about Down syndrome for fear of regretting their decision? What about those who live with a terrible guilt for years to come? You’re right, there is little support for them, and the medical system that currently forces these decisions upon people, then leaves them alone and with no follow-up counselling . They are left to go home and try to make a ‘better’ baby.

    Good luck in your quest for the perfect normal family. Maybe you will be successful and will have a child who doesn’t suffer from depression, have diabetes, heart disease, cancer, an extremely high IQ or an extremely low one, is not gay, doesn’t have red hair or a big nose, bi-polar disorder, chrones disease, doesn’t have autism, asthma, any other health problems, isn’t bullied at school, doesn’t have hyperactivity disorder, tourettes syndrome or OCD….. etc, etc.

    And for societies sake I hope that s/he does not create a large carbon footprint, have anti-social behaviour, is not unpleasant, nasty, self-centred or a criminal.

    I whole heartedly agree with the points that ‘Disappointed’ has so eloquently made. I have two children, one of whom also has Down syndrome (and I did know before he was born) – I am extremely lucky to be their mother. We might be a slightly kooky family but I have no regrets – and we have suffered no hardship or health problems. The fears that I had before my second son was born have not been born out by reality. They were just fears – based on the unknown and on ignorance.

  • Claire

    Whatever they decide is their choice, and it’s not my place to judge. But if that were to be my choice, it would be for selfish reasons. Because I would be (to use a phrase from another post) chicken shit to face what comes with having that baby.

    That’s interesting – it’s not your place to judge, but someone who does so is a chicken shit? That’s about as judgemental as anything I’ve ever heard. You may have framed it as what you would think of yourself, but that was a rather transparent device, and really, the judgement came through loud and clear.

    And adoption is not an option, because I don’t want to have to justify and defend myself against the people who would judge me for that, not to mention the guilt I would feel.

    And dumping a child with disabilities on the state or another person ISN’T selfish? Creating a burden you don’t want just to dump on someone else? That’s incredibly more selfish.

    And for all those who chose to knowingly have a moderately to severly disabled child (NOT so much Down syndrome, which can turn out ok, but the really bad problems that never do) and speak glowingly of how it has enriched their lives to love and care for someone like that – well, good, I’m glad for you. But unless you paid for everything that child needs, without taking a cent from a state or federal disabilities program and without making your insurance company pay for related bills, you’re still irresponsible.

    I have spent a good portion of my working life dealing with a facet of this that no one has mentioned, and I know how the system works. People who decide to do this may do a wonderful job with the emotional part, but they rarely can or do assume the financial burden for caring for a severly disabled child, and that is both selfish and irresponsible.

    Those children need help – a LOT of help, medical help, help with school, help with accomodations. The states make a lot of help available, not just in programs for the disabled but in many aspects. If the parents are lucky, they have insurance, which pays for a lot of the often extremely high medical bills. If they don’t, Medicaid foots the bill. And who really pays for this? Everybody does – me, you, everybody – because it comes out of our tax dollars and our ever-increasing insurance premiums.

    Does this bother me? The tax dollars, not really, the insurance premiums, maybe a little. I think these programs are great, I am happy to help. What REALLY bothers me is the money it takes away from other poor children who need medical care or other help. One infant with serious problems, covered by Medicaid, can easily use up a million dollars in their first year of life, money that could have helped one hell of a lot of other people. That’s physical exams, vaccinations, and treatment for maybe 5000 poor uninsured kids. Or, ten years down the line, when someone else’s kid is crammed into a classroom with too many other students because the school district had to choose between another teacher or extra accomodation for more disabled children, that child is paying in a different way. So, the person who decided to have that baby and can’t financially provide for all the problems it’s going to have, has deprived someone else’s children who also needed help.

    Am I being judgemental? Yes, because it’s legitimate when it comes down to public dollars. Private lives, no – public funds, yes.

    If you have a disabled child by accident, or the child (or you) becomes disabled, these programs are there to help you. If you rely on them to help with a child you brought into the world knowing it would need them, you are a freeloader and an intentional drain on society. If you rely on them to care for the baby you give birth to and then give up, you are all kinds of selfish and irresponsible.

    I will no doubt hear from people who did it without taking a cent from the state, but chances are the disability was less severe. I might even hear from people who weren’t covered by insurance but managed to pay the bills anyway, except chances are a lot of other people also chipped in. If so, these families are the exception, not the rule. Good for them, they are exceptional people, but they are not the norm.

  • Stephanie

    Wow, I don’t know where to start.

    I am a mother of a 2 year old son with DS T21. Did I know before? No. Did I have the screening? YES. so where does that leave me in the discussion? All my tests were normal; all my ultrasounds normal. The day after he was born the pedi came in and said ” I think your son has Down Syndrome, we are conducting blood tests to be positive, but he has certain physical signs.’
    I was dumbfounded. Not really sure how to react. He was born healthy, no heart problems, no gastro problems, he was in essence “normal.”

    Would I have aborted had I known? NO Why? I chose to get pregnant. I chose to bring a child into this world. I entered into it knowing that there were risks, so what. If you are not ready for the risks, don’t take them.
    There is no guarantee your child will be healthy and without flaw. Medical screening for DS is not highly accurate. Did your OB not tell you that the results of the pre-screening blood tests are only accurate 80-85% of the time and that if you are not tested at tthe right time that percentage varies greatly. The only way to accurately know is to do an amnio. You know stick a needle in, pull out genetic material and whalla you have an answer. Remember, my tests were all negative. I wasn’t going to have an amnio because statistically 1 in 250 result in miscarriage.

    To abort or not to abort, what a question. In the end it is a personal decision. You have no guarantee that your “normal” child will grow up that way. They might get cancer, lymphoma, become a drug addict, die in an accident or on purpose. All of the above bring their own pain, financial strain, emotional and mental stress.

    Perhaps the question should be, do you really want to be a parent? Because it is not an easy road, does having a child with DS make the job more difficult? Not necessarily when you wiegh in the other factors I mentioned above. Their is absolutley no guarantee your child will be normal. What is that anyway?

    I love my son and am fortunate to have him in our lives. That being said I am fortunate to have his older brother as well. They have both enriched my life beyond measure.

    Tough decision. Yours to make. Yours to live with.

  • Leylah

    Claire, I have paid health insurance premiums all of my adult life and hardly ever gone to the Dr., so I guess by your way of looking at it I can judge everyone who doesn’t take care of themselves as selfish free loaders? People who smoke and drink, do recreational drugs, eat too much or eat crap, don’t get enough exercise, drive without their seat belt or even people who are workaholics who are over stressed, all of those people end up needing more medical care and drive up my health insurance premiums by their irresponsibility?

    Same could be said about my tax dollars, because my husband and I and our families have paid into the system, just like you. Why shouldn’t some of our tax dollars go to help my child and others like her? Why should my tax dollars go to subsidize corporate farmers? Why should my tax dollars go towards building sports arenas? Or fund a war that I do not believe in?

    If you look at the federal budget you will see how few of your, and my tax dollars go to programs that help disabled children and their famililes. The problems with the cost of medical insurance have far more to do with the irresponsible life styles of “typical” adults, lawsuites, and corruption, than the pitance that is paid out for therapies or interventions for disabled children, and again, if they have insurance most families have paid into it for years, why shouldn’t their children benefit from something they have paid for?

    I don’t know. I completely understand someone’s choice not to knowingly have a disabled child, but I just don’t understand why my decision to do so should be fair game for others to pass judgement on.

  • Mriana

    doesn’t have red hair or a big nose, bi-polar disorder, chrones disease, doesn’t have autism, asthma, any other health problems, isn’t bullied at school, doesn’t have hyperactivity disorder, tourettes syndrome or OCD….. etc, etc.

    Yes, I got the double wammy in that my older son has bi-polar disorder. So, both my sons have their own set of problems, but I don’t love them any less for it.

    As for tax dollars- hey, I’m all for socialized medicine, so that says a lot right there. It’s worked for Britian, Canada, and Australia. It can work for us, if people were not so selfish and wanted to share the wealth.

  • Julie

    WHOA THERE GERONIMO!! You better get your facts straight before you start accusing disabled kids of taking money from poor kids. Those poor kids get allot more funding than disabled kids, because the disabled kids do not get help until they qualify as poor. We have needed help from the state and the government but were unable to qualify because we were not poor enough.

    We all pay the same taxes. If you want to bitch about someone’s children taking funds from the government then lets get to the issue of immigrants. They pay no taxes and attend public school, are treated in the ER’s, and get all kinds of government funding.

    Stop your flaming and get educated.

  • Claire

    No, YOU get an education. There is only ONE bucket that all the dollars come out of, and each program fights for their share. Take money for this group, that group loses out. That’s just the way it is. There are so many disabled children in the system that the money to help them is in short supply, and the only way to increase it is to take the money from somewhere else. So if someone decides to intentionally have a disabled child, they should be prepared to pay the child’s way.

    We all pay the same taxes. If you want to bitch about someone’s children taking funds from the government then lets get to the issue of immigrants. They pay no taxes and attend public school, are treated in the ER’s, and get all kinds of government funding.

    How about you get educated some more? Immigrants here legally do pay their share, only illegal immigrants come up short, and even they pay some. In fact, what the illegal immigrants pay into Social Security and will never collect are subsidizing the citizens who will. Check this out from the New York Times.

  • Claire

    As for tax dollars- hey, I’m all for socialized medicine, so that says a lot right there. It’s worked for Britian, Canada, and Australia. It can work for us, if people were not so selfish and wanted to share the wealth.

    You are preaching to the choir here. It’s a shame that the wealthiest nation in the world thinks it can’t afford something so basic.

    I have paid health insurance premiums all of my adult life and hardly ever gone to the Dr

    You know, it’s funny, but most people pay for fire insurance for their house and don’t complain because they never needed it. Unless they burn it for the money and can’t collect because that’s arson and illegal. That’s what insurance is supposed to be, to cover the unforseen, not the deliberate and intentional.

    so I guess by your way of looking at it I can judge everyone who doesn’t take care of themselves as selfish free loaders? People who smoke and drink, do recreational drugs, eat too much or eat crap, don’t get enough exercise, drive without their seat belt or even people who are workaholics who are over stressed, all of those people end up needing more medical care and drive up my health insurance premiums by their irresponsibility?

    I take it you haven’t been reading the newspapers? There is a push to do exactly that. Mostly it’s being led by employers tired of the rising premiums. And if you do any of those things and want to purchase an individual policy? Sorry, that won’t be happening.

    The problems with the cost of medical insurance have far more to do with the irresponsible life styles of “typical” adults, lawsuites, and corruption than the pitance that is paid out for therapies or interventions for disabled children

    Yes and no – actually, the rising costs have more to do with the fact that insurance exists at all. When insurance entered the picture, market forces stopped controlling the cost of health care and it skyrocketed. If people actually had to pay for their medical services, they would use far less and use it more wisely. If medical providers had to supply health care for what people could afford to pay, they couldn’t charge a tenth of what they do, and they would find less expensive ways.

    Lawsuits are also to blame, and nobody is faster to sue than a parent who wants something for their child. When an insurance company does try to rein in costs by denying questionable treatment, they are sued and often lose, and all our premiums go up. Unless they live in state where the insurance company is protected from lawsuits, then they will start denying legitimate treatment as well, and sick people lose out.

    Overuse and overtreatment are also factors. People who would never have their car engine replaced on the say-so of one mechanic will cheerfully have a surgery that costs thousands because the first surgeon they saw said it was a good idea, without checking to see if more affordable treatment might not fix the problem.

    Why should my tax dollars go to subsidize corporate farmers? Why should my tax dollars go towards building sports arenas? Or fund a war that I do not believe in?

    I agree with you on every single one of those – the last three are horrific wastes, and if we could get rid of them, we would be swimming in the dollars for all the worthier things. But the reality is, there is a lot of waste in government, the social services agencies DO have to fight for every penny to help people, and why someone should feel entitled to add to that problem I just don’t understand.

  • Julie

    Claire,
    Maybe I am not understanding you correctly, but your first post accused disabled children taking much needed funds from poor children:

    ” What REALLY bothers me is the money it takes away from other poor children who need medical care or other help. One infant with serious problems, covered by Medicaid, can easily use up a million dollars in their first year of life, money that could have helped one hell of a lot of other people. That’s physical exams, vaccinations, and treatment for maybe 5000 poor uninsured kids.”

    And then you go on to say in your next post that the money for disabled children is in short supply:

    :
    “There are so many disabled children in the system that the money to help them is in short supply”

    So which is it? Is it your perception that I am draining the system dry or that the system is draining me dry?

    You go on to point out in an article in the New York Times that illegal immigrants are paying into social security and not recieving benifits. The story talks about a man who paid $2000 in taxes last year and will get no benefit. ARE YOU KIDDING ME??!!! Last year we paid $33000 in social security ALONE, and will never EVER see that money again. You my friend have no clue.

    Your see-saw comments do not give you much merit in my book. What I see is someone trying to inflame the issues with accusations that have no backing. Make up your mind darlin. Pick a side and stay on it. And pray and hope you do not ever find yourself disabled, out of work, trying to get assistance to feed your family. It is not as easy as you think. We have been turned down for aid so many times that I have just stopped trying. We pay what we can and we go without medications and doctor visits when we cannot afford it. Which, from your posts would be fine with you to just let my daughter suffer and die. Then she would not be a drain on the system.

    What kind of monster are you?

  • Julie

    Claire,
    Just pointing out more misinformation in your post:

    The states make a lot of help available, not just in programs for the disabled but in many aspects. If the parents are lucky, they have insurance, which pays for a lot of the often extremely high medical bills. If they don’t, Medicaid foots the bill. And who really pays for this? Everybody does – me, you, everybody – because it comes out of our tax dollars and our ever-increasing insurance premiums.

    Medicare does NOT foot the bill for what the insurance does not pay. Medicare does not kick in until we are well within poverty limits and with out insurance.

  • Leylah

    Claire, I have to wonder how old you are, as I have found some of your comments rash and inflammatory.

    You know, it’s funny, but most people pay for fire insurance for their house and don’t complain because they never needed it. Unless they burn it for the money and can’t collect because that’s arson and illegal.

    I live in New Orleans, if you think the insurance industry is fair and honorable you should come vist and talk to some of the people here.
    Also, I’ve never met anyone who “cheerfully” has surgery, although I’ve known people who were either so overwhelmed by their diagnosis,or who put too much faith in their Drs and didn’t get second opinions.

    That’s what insurance is supposed to be, to cover the unforseen, not the deliberate and intentional.

    Do you really think that anyone deliberately and intentionally sets out to have a disabled child? That statement is naive at best and offensive at worst. I can’t think of one single woman who wanted to conceive a disabled child. I state again, that life is a crap shoot for everyone, that is why we pay taxes and pay for insurance. Yes, I had a child with downs syndrome, she is the healthiest person in our family. You could have a “healthy” fetus and deliver at 24 weeks and end up with a baby costing millions in insurance and tax payer dollars for all the treatments to save your child’s life. Are you really telling me that I am selfish and irresponsible because I wanted my child and would not abort her? Someone up thread said it was absurd to compare a live baby with an fetus and while I understand the rationale of that arguement I have to point out that if you really wanted a child and found out you were pregnant, that bonding starts right away. You can love a fetus just as much as you love a born baby. Being an atheist does not mean that you are cold and logical and think only of the well being of the state, at least not for me.

    Oh, and I believe the military budget is about 22% of the of the total 2007 federal budget, social services getting roughly 3%, education I believe around 4%. Maybe it would be more cost effective to be railing against our government instead of judging the value of less than 1/2 million people with ds.

  • Julie

    Claire,
    You know, the more I read your posts, the more comical and immensely immature they are! I cannot even believe some of the ideas you commit to in writing with your name on them!! For example:

    Lawsuits are also to blame, and nobody is faster to sue than a parent who wants something for their child. When an insurance company does try to rein in costs by denying questionable treatment, they are sued and often lose, and all our premiums go up. Unless they live in state where the insurance company is protected from lawsuits, then they will start denying legitimate treatment as well, and sick people lose out.

    DID YOU ACTUALLY SAY THAT PARENTS ARE THE ONE’S TO SUE WHEN THEY WANT SOMETHING FOR THEIR CHILD, and THE INSURANCE COMPANIES OFTEN LOOSE?!?!?! Do you actually live on this planet??? In every health insurance policy that I have held in my 40 years of being here, there are strict clauses about the fact that you cannot sue. You can appeal a payment or non-payment, but the processes are often so lengthy and difficult that people just give up. The insurance companies bank on this happening.

    You then go on to say that insurance companies are denying legitimate treatment. REALLY? I have never heard of that happening. Maybe you can enlighten me with some facts on that issue.

    You go on to reverse your position about who is draining the system, flip flopping your view by saying that “sick people are loosing out”. You are worse than a bloated politician on the campaign trail speaking out of your, you-know-what.

  • http://daybydayhsing.blogspot.com Dawn

    Dawn, it’s NOT half a life. These kids DO have full lives and are very happy. Have you ever met a child with Down Syndrome? To you observe their smiles and laughters or do you observe the odd facial features and various degrees of intelligence?

    Mriana – I apologize as I wasn’t clear enough. I was commenting on the half life quote from the OP. My point being that the half life comment was a dismissal of those with DS.

    Personally I’ve known quite a few people with DS and they’ve all been wonderful and full people who I felt honoured to know. Knowing them has assured me that if I ever found out I was carrying a DS child I’d be as happy as if I was carrying a “normal” child.

    It seems to me that some who seem to think those with DS are somehow inferior or have a half life are sheltered people with little life experience, in other words, they live half lives themselves.

  • Kyrenea

    Oh, wow!

    I can’t believe the nonsense that is spewed by those who live in make-believe land. WOW! I wish I could live in a land where the gov’t paid for all my daughter’s medical and such. I’d love to be able to sue my insurance company into paying everything they have denied…geez, get a life or at least research your facts before you post.

    That out of the way. I’m raising a daughter with Down syndrome. She is 2 1/2 and is perfectly healthy no major medical health issues. As another poster stated, we get no help from the gov’t since our income is above the allowed limit for her to collect SSI or receive Medicare or CHIPS. Furhter more, when my husband was unemployed for 4 months…the state came back AFTER THE FACT and asked that we repay part of the assistance we had received.

    I think until you have walked in someone’s shoes, you really should not attempt to judge them or their life. Our daughter was diagnosed after her birth. All my prenatal testing gave no indication she would have Down syndrome…they call that a false negative diagnosis. I personally know 3 women who were given a false positve diagnosis…thankfully they are not part of the 91% of women that opt for an abortion…the world would be short 3 perfectly healthy little bundles. Makes me wonder how many of those 91% were also perfectly healthy????

    Until you’ve recieved the gift that is a child…you really can’t understand all the things that go through your mind, let alone your heart. We had no idea what to do or how to do it…but we knew how to love and that was the one thing our daughter needed most from us at that time. For her family to love her unconditionally…just as you would any other child put into your arms.

    And just as we would with any other child born to our family – we are raising her and caring for her based on the means we can provide ourselves. At times, family has stepped up and helped with the bills. We receive services from ECI and pay our family cost share vs using more expensive private therapy.

    We are considering a 2nd child. If testing shows the baby to have a higher than normal chance of being disabled will I abort? No. If I make that decision to be a parent, I am willing to face that reality 100%. I only wish that other women in the world had the support system I discovered in family, friends, co-workers and community.

  • Mriana

    I’m glad to hear that, Dawn. That comment had me a bit concerned.

  • smcelwee

    Annoyed
    I need the studies you are referencing for a project I am working on. If you have links to the websites, names of the studies, including the researchers and the dates that would be very helpful.
    Thank you,
    sandra.mcelwee@cox.net

  • Julie

    Sandra,
    Here is a link to the full study on Divorce rates:

    http://www.aaidd.org/Reading_Room/pdf/AJMRDivorceandDownSyndrome.pdf

  • MsAmelia

    I’m not sure what this site is about, but as an atheist and the mother of a 15 year old son who has Down syndrome, I still cringe when I hear about people aborting because of a bonus chromosome. I knew well in advance of his birth that my son had Down syndrome. Would I change a thing about him? NOOOOOOOOOOOO, but he wants me to dye his hair blonde.

    Whomever wrote the original post is rather ignorant in supposing that all children with Down syndrome are ill. My son is extremely healthy. That she would carry a child with a physical disability shows her ignorance…how many years will she be able to transfer her child from the bed to the wheelchair? How many years will she be able to bathe her child, especially when that child becomes an adult?

    Children are children and if you can’t love a child unconditionally, do me a favor and don’t have any.

    Amelia


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