Abortion and Down Syndrome

29 Jan

First of all, let’s get one thing straight: I am not in the business of judging women for when and why they choose to abort. If you’re only going to take one thing away from my blog ever, please let it be that.

Now that we’ve got that out of the way, I have something that I want to talk about.

I want to talk about the fact that, according to some studies, an estimated 90% of fetuses that receive a prenatal diagnosis of Down Syndrome are aborted.

It should be noted that the actual numbers may be less than that, and some studies show a decrease in recent year in the number of pregnancies terminated after a prenatal Down Syndrome diagnosis. We’ll go with that 90% figure, though, because it seems to be fairly accurate and is the one that I see pop up the most often.

It should also be noted that this figure should not be misinterpreted as “90% of fetuses with Down Syndrome are aborted.” That statement is patently untrue. For one thing, many people opt out of prenatal genetic testing, or do not have access to it. So while it’s a fact that thousands of fetuses are aborted after a diagnosis of Down Syndrome, it should also be noted that there are still thousands of babies with Down Syndrome being born in North America every year.

All of that being said, that 90% is not an insignificant number. And we have to look at what that means, both in terms of the pro-choice movement, and in terms of the stigma surrounding Down Syndrome.

With regards to the pro-choice movement, there’s been talk recently (in the US, at least) of enacting a ban on abortions due to fetal abnormalities. A bill was introduced in North Dakota last week that, if passed, would charge doctors who perform abortions for reasons of sex selection or genetic abnormalities with a Class A misdemeanour, which could potentially result in a year of prison time. Indiana is trying to pass a bill that would charge doctors who perform abortions in cases of genetic abnormalities with a Class C felony, which can result in up to 8 years of prison.

Needless to say, I think these laws are a terrible idea, for a number of reasons.

First of all, as previously noted, I don’t think that banning abortion does much good anyway, as studies have shown that it does not affect the abortion rate.

Second of all, I never, ever think that giving women less information or less choices is the way to go. I think that women should be given all the information available about their fetus. I think that women should always have the option to abort that fetus, even if their reason is the sex of the fetus or because the fetus has Down Syndrome. And I think that limiting abortions because the reason for one particular abortion makes us uncomfortable is a slippery slope.

Thirdly, I think that these laws would be difficult, maybe even impossible to implement. Would they allow for abortions in cases where the genetic abnormality is incompatible with life? While it’s true that a doctor can diagnose genetic abnormalities with 100% accuracy given the right tests (tests like amniocentesis which, by the way, many women avoid because they carry a risk of miscarriage), no doctor can ever truly predict whether a disability or genetic disorder is incompatible with life. Does this mean that doctors will force women to continue pregnancies in cases of anencephaly, because in rare cases babies born with that condition can survive outside of the womb, albeit with absolutely no quality of life?

Finally, and most importantly, I don’t think that the fact that 90% of fetuses diagnosed with Down Syndrome are being aborted is the problem. I think that it’s a symptom of the problem, and as such, I don’t think that a ban on abortions is going to fix anything.

The really problems are stigma, lack of education and lack of resources.

We need to have doctors who are better educated about Down Syndrome, so that they can provide better information to their patients. This is especially crucial given that a new blood test is being developed that can, with 100% accuracy, predict whether or not a fetus has Down Syndrome. This is a test that can be administered by family doctors, meaning that now your general practitioner, the person who, as things stand now, has had very limited training when it comes to disabilities, will now be counselling you on whether or not to terminate your pregnancy. Many doctors will give women misinformation, or blatantly one-sided information, that will lead to the decision to abort. We need doctors who are providing the full picture, so that women can make truly informed decisions.

We need more government resources for families with children with disabilities. My mother is a social worker who works with children with disabilities, and I have heard many first-hand accounts about how little the government provides, and how incredibly financially straining it can be for a family with a child with Down Syndrome. People living with Down Syndrome can have a whole host of medical problems, sometimes spending years at a time in the hospital. And while, yes, we have socialized medicine in Canada, which means that the hospital bills will be paid (assuming that the hospitalized person is in a ward, not a private room, and excluding the cost of medication), what we often don’t take into account is the time that a parent of a child with a disability will have to take off work. Some parents even find that they are unable to work and have to care for their children full-time, or else face the idea of having their child institutionalized (this scenario is, admittedly, rare for children with Down Syndrome, but happens quite often for children with more serious disabilities or delays).

Above all, we need to work to reduce stigma. We need to find ways to teach society that a diagnosis of Down Syndrome is not the end of the world; that people with Down Syndrome can and do live long, healthy lives and contribute in many ways to the world around us. Most people with Down Syndrome are able to work outside of the home; many are able to leave their parents’ homes and go to assisted-living communities or places like the L’Arche homes. We need to have people with genetic problems and developmental disabilities become more visible in our society; why not have a character with Down Syndrome on a children’s television show? Why not feature more children with developmental delays in children’s books, or in movies? Why not include children and adults with Down Syndrome in consumer advertising campaigns, modelling for clothing companies or whatever? How are we ever going to teach society that those with disabilities are people, too, if they remain almost totally invisible?

I was speaking with a friend today about receiving a prenatal diagnosis of potential Down Syndrome (she’d had ultrasounds, but had opted not to have an amniocentesis, so doctors couldn’t say 100% whether or not her son had Down Syndrome). She said a few things that really struck me:

I remember a few weeks before his anatomy ultrasound reading a story of a mom who had a baby with Down Syndrome without any prior clues on any testing.. and I was like “oh well, what’s the big deal?” And then when everything went down for us I understood what the big deal was. It wasn’t that I didn’t want HIM, it was that everything that I wanted for him may not have been possible […] I think another factor for me was that it was like suddenly this baby that I had inside me for 20 weeks was a stranger. Because I had built up one image in my head of the perfect baby and suddenly they were someone different. Not any less perfect, but just not what I was preparing myself for, so I definitely went through a grieving period, even though I didn’t think Down Syndrome was a big deal prior to that.

Reading her comments made me tear up a little, because I think that this is something that we don’t often talk about, the idea that a diagnosis of Down Syndrome can feel like a loss. We don’t talk about the fact that the baby you’ve been envisioning all along, the baby you’ve been in love with no longer exists, and needs to be grieved. I remember that after I had my c-section and was upset about the fact that I hadn’t been able to have the natural birth that I wanted, someone told me that it was okay to grieve that birth. And hearing that helped.

And I think that in the society we live in, the society that teaches us that people with Down Syndrome are inferior, that their lives are worth less and, as such, they are to be pitied, it only makes sense that some women, as part of their grieving process for the child they thought they were carrying, will choose to abort a fetus with Down Syndrome. A diagnosis of Down Syndrome can often makes a mother feel that she might never love her child, might never want to hold them or care for them. What good will it do to force that mother to continue her pregnancy? And if you tell me that she’ll learn to love her child, that every mother automatically bonds with her child, well, you’re voicing the same anti-choice rhetoric that’s used against young or unprepared women who are facing an unplanned or unwanted pregnancy.

Banning abortions in cases of genetic abnormalities isn’t going to make people believe that those living with Down Syndrome are any more valuable, or less pitiable. Banning those abortions won’t magically make more funds or resources available to struggling families. Banning those abortions won’t make doctors any more knowledgeable about Down Syndrome or other disabilities. Banning those abortions won’t make a mother feel more capable of loving a baby with Down Syndrome. Enacting such a ban will only going mean that there are more mothers and fathers who feel lost, alone and unable to cope.

Is that really what we want?

trisomy

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9 Responses to “Abortion and Down Syndrome”

  1. Froward Words February 15, 2013 at 4:20 am #

    As someone who terminated a very much wanted pregnancy after years of infertility, I get upset when I hear people say that THEY will love their babies no matter what. As if I DON’T love my baby?

    There is so much more to a poor prenatal diagnosis than what people see. It’s easy to judge someone when the only experience with fetal anomalies are pro-choice pamphlets and webpages designed to give parents hope.

    Your post was thoughtful, well written, and insightful, but if were forced to carry to term, I don’t think I’d feel “lost, alone and unable to cope” – I’d feel guilty for “giving” my daughter a life destined for physical pain, which is why we chose to interrupt the pregnancy in the first place.

    I think that the proposed bills in ND are incredibly cruel and, must have been written by someone who “must have very little imagination about what life can deal out to people,” as said by another women who TFMR.

  2. violetwisp March 10, 2013 at 3:47 am #

    What an excellent post on a really difficult and complicated topic that is so often blurred by strong emotions on either side. Thanks for putting things like this out there!

  3. Carolyn March 10, 2013 at 4:22 pm #

    Hi there. I had my 4th child when I was 30 years old. I didn’t even know she was lurking around in there until the 22nd week of pregnancy, but my OB/GYN was “kind” enough to give me the triple 7 blood test to rule out any genetic defects (that test is normally given in the first trimester). My test came back saying my unborn child was going to be born with spina bifida, a cleft lip, and Downs syndrome. My doctor actually recommended I abort (at 24 weeks, when the blood test came back that was done when I discovered I was pregnant at 22 weeks). Needless to say I scared the bejesus out of that lunatic. I gave him a look he’ll never forget, stood up out of the chair across from him, leaned my hands on his desk and got in his face, and gently smiled, and quietly said “I’m confident that I can handle whatever God throws at me. No thanks.” His face drained of blood, I’d never seen a black man turn white til that day. And then I left and promptly changed doctors.

    Everyone in my family was told the horrible news. We all cried, we all got angry, and we all decided that the choice was up to me. I chose to keep my baby, damn the future. She was born at 41 weeks, perfectly healthy…. no abnormalities, no visible signs of genetic cross wiring. Her only disease, that was diagnosed at age 3 years when it first reared its ugly head, is Type 1 Diabetes. She is, and always will be as long as she lives, an insulin dependent person, but she is otherwise healthy, and right now she is a 12 year old who loves her life.

    The test I was given (nicknamed the “triple 7”) has a very low accuracy rate, yet its given to all pregnant moms in the first trimester to give the parents a predisposition of some of their child’s genetic make up, just in case they don’t want a child with severe disabilities or drastic needs. Its a farce. If I had believed and listened and done what my doctor had suggested, Katerina would not be here today, with her beautiful wisdom and grace.

    • Lauren March 19, 2013 at 4:41 am #

      Carolyn — Thank you for your comment. This is so important to keep in mind. My own brother was in a similar situation. Even when born not breathing, the doctors told my parents put him in a home, he’ll be a vegetable. And after a week of getting off of their drugs after birth, he is now almost 30, and leading a perfectly, normal healthy life like any other person. So many parents are scared by their doctors into thinking that their children will have abnormalities and are told by their doctors that their children have abnormalities. It’s like we are promoting a culture of death. More sad to me is that their are people who have lived through an abortion and would have otherwise led normal, healthy lives and now have to deal with their mother’s “choice.” What many mothers are not aware of is the genetic research that has been done and can actually even correct abnormalities or issues with a child before they even leave the womb. I am currently carrying my child, and I can’t imagine giving it up for any reason. To say that the child even with abnormalities would experience a complete life of pain or suffering is to not see the beauty in its very life and the joy that children especially those with abnormalities find in simple things.

  4. Erika March 31, 2013 at 2:51 am #

    Thank you so much for the well worded post! As someone from North Dakota who is pro-choice, your words are ones I can turn to when explaining to others why the new bills signed by the governor are absolutely ludicrous. I especially like when you say that the abortions are not the problem, but a symptom of the problem. This is absolutely correct! Thanks again! You have gained a follower!

  5. Outlier Babe April 2, 2014 at 12:06 am #

    You write extremely clear, well thought-out posts.

    These children used to be more integrated into our communities. We described M. to others as either “retarded” or “slow”, but she was considered a peer in terms of being part of our childhood gang. One of my best friends had a retarded brother (f#ck the p.c. terminology) who was kept at home, and everyone of all ages in the neighborhood enjoyed knowing him. Eventually, he did go away to school and then a group home. No one was ashamed of him except his own sister, my friend.

    However: I suspect that were I to have learned my own fetus had Down’s, I would have aborted–I THINK not due to the mental issue, but to the odds of painful surgeries and a short lifespan. I would have felt that would break my heart.

    Besides the obvious moral issues, the biggest problem I have with any government regulation of women’s reproduction is that it is sexist: if she is single or divorced, the government doesn’t offer to pick up the fiscal differences to make their policies non-sexist (1) HER (only women’s) costs for post-pregnancy hemorrhoids, varicose veins,prolapses, rectoceles,fistulas–co-pays, if insured, 100% her costs, if not (2) the lionESS’s share of child-related expenses: medical co-pays or 100%, lost income due to time off work and caregivers, child’s food, clothing, school supplies, etc.–each denied abortion forces another 18+ years of this. I blogged about this a few years back. It…irks me.

  6. Kathy Dettwyler April 20, 2014 at 9:47 pm #

    Lovely post. I have a 28 year old son with Down Syndrome. He lives at home with us and spends his days at an Easter Seals day program. I can’t imagine life without him, and I am convinced that my other two children, one younger and one older, are better people for having Peter as their brother. I did not know before he was born that he had DS. There are many fewer people with DS around today than there were when Peter was born, because of prenatal diagnosis and abortion and the stigma/fear/ignorance. When I travelled to Ireland, I was struck by how many people with DS of all ages one sees every day just walking around in the city.

  7. concerned April 21, 2014 at 1:28 am #

    The worldwide study claiming that abortion bans do not reduce abortion rates has been discredited based on its shoddy methodology. I can’t find the link to the rebuttal, but it is out there.

  8. chikkimunkee March 25, 2016 at 8:19 pm #

    “However: I suspect that were I to have learned my own fetus had Down’s, I would have aborted–I THINK not due to the mental issue, but to the odds of painful surgeries and a short lifespan. I would have felt that would break my heart.”

    This is exactly the kind of misinformation the author of the post was worried about. What on earth are you talking about? There no painful surgeries one must have if one has DS. The expected life expectancy is over 60.

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