90% of Babies With Down Syndrome Aborted? Really?

Penny will “graduate” from pre-school today. She’ll sing songs and receive a diploma and give hugs to her friends and her teachers. And we’ll feel a little silly that we’re sitting through a pre-school graduation and a little nervous that kindergarten comes next and very proud of our little girl.

And we’re not alone. We’re not alone in a general sense–tons of parents feel silly and nervous and proud of their 5-year-olds. But we’re also not alone among parents of children with Down syndrome.

And yet there is a pervasive sense among people within our culture that people with Down syndrome are undesirable or even that they are better off never being born. I read it all the time, the news that “85-90% of babies with Down syndrome are aborted.” But it’s a bit more complicated than that, and it’s important to recognize that more families are willing to welcome a child with Down syndrome than the numbers suggest.

In actuality, 80-95% of pregnancies with a prenatal diagnosis of Down syndrome are terminated (a meta-analysis concludes that 92% worldwide are terminated), according to studies provided to me by Dr. Brian Skotko of Children’s Hospital Boston. Prenatal diagnosis means that a woman has chosen to have an amniocentesis, the most reliable way to determine the chromosomal makeup of a fetus. (Note, I say “most reliable” because amnios are still sometimes wrong. I just met a woman whose mother was told, after two amnios, that she would have Down syndrome. She doesn’t. I also have a friend who was told that her daughter had a missing first chromosome and would die in utero or shortly after birth. Her daughter was born with Down syndrome but not with an absent first chromosome. She’s a healthy and happy 6-year-old now.) Many women elect to have prenatal screening tests, but, according to Henry Greeley, writing for Nature (January 2011), only 2% go on to have an amnio. As a result, most babies born with Down syndrome were not prenatally diagnosed.

On the one hand, this is good news. Presumably one of the reasons that women don’t get an amnio is that they wouldn’t terminate the pregnancy even in the case of Trisomy 21 (aka Down syndrome). Or, to put it another way, the group of women who do choose an amnio may be somewhat self-selecting for abortion. (Of course there are other women that choose an amnio in order to be prepared ahead of time. The majority of my friends with kids with DS had a prenatal diagnosis and continued the pregnancy.) Furthermore, the fact that so many women don’t receive a prenatal diagnosis and don’t terminate their pregnancies means that the number of children born with Down syndrome has actually increased slightly in recent years (without abortions due to prenatal diagnosis, however, it would have increased much more in light of the fact that more women are having babies later on in life).

The reason I’m drawing attention to the fact that so many children with Down syndrome are not aborted is that I want women who opt out of prenatal testing or who choose to continue a pregnancy with a prenatal diagnosis or who give birth unexpectedly to a child with Down syndrome–I want these women to know that they are not alone. Thousands of other parents are in your shoes. Thousands of other families have made similar choices. And hundreds of thousands of individuals can testify to the goodness and purpose in the lives of their friends and family members with Down syndrome.

In writing all this, I don’t mean to ignore the cultural reality that many people do not want a baby with Down syndrome and, furthermore, many of those people choose abortion as a result. Moreover, advances in prenatal testing suggest that women will soon be able to receive a prenatal diagnosis much earlier in pregnancy and in a much less invasive manner than an amnio. These advances suggest that more and more women will find out that their children have DS much earlier on and that more and more pregnancies will be terminated as a result. Offering accurate information to these women and to their doctors is crucial in helping to create a culture that cares for and includes individuals with Down syndrome rather than assuming it would be better if they never were born.

I hate the thought that there will be fewer people with Down syndrome in the world as a result of advances in prenatal testing. As I’ve written before, it impoverishes us all when we selectively abort babies based upon particular characteristics (gender, for instance, in China and India… disabilities here in America). But I also hate the thought that mothers of children with Down syndrome think they are alone. Yes, some women choose abortion when they see a karyotype with three 21st chromosomes. But many other choose life.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Hi Amy Julia,

    I just heard that statistic for the first time at a conference I was at with Andy Crouch. Thank you for explaining it and giving hope to mothers in your situation. You’re a voice in the wilderness!

  2. Hi Amy Julia,

    I just heard that statistic for the first time at a conference I was at with Andy Crouch. Thank you for explaining it and giving hope to mothers in your situation. You’re a voice in the wilderness!

  3. Tricia Tice says:

    That is an encouraging analysis of the data. We were surprised too…

  4. Tricia Tice says:

    That is an encouraging analysis of the data. We were surprised too…

  5. Thank you, Amy, for this supportive post.

  6. Thank you, Amy, for this supportive post.

  7. Well done, Amy. I’m happy to have found your blog.

  8. Well done, Amy. I’m happy to have found your blog.

  9. Found your blog through a few friends. We had a VERY early pre-natal diagnosis. I think the internet was a great tool for us – We knew several other families pregnant at the same time with a pre-natal diagnosis as well. We now have a mostly healthy (she still needs heart surgery) and happy baby with a whole lot of personality.

  10. Found your blog through a few friends. We had a VERY early pre-natal diagnosis. I think the internet was a great tool for us – We knew several other families pregnant at the same time with a pre-natal diagnosis as well. We now have a mostly healthy (she still needs heart surgery) and happy baby with a whole lot of personality.

  11. Kelly Sellon says:

    How did you read my thoughts so well? This post is perfectly worded! Thank you… And my son with Ds thanks you too!

  12. Kelly Sellon says:

    How did you read my thoughts so well? This post is perfectly worded! Thank you… And my son with Ds thanks you too!

  13. Krishend76 says:

    I was told my child may have Down syndrome several hours after he was born and did not know for sure for several days. Although it was difficult and unexpected at first, I would not choose differently. He is an amazing little boy who lights up our life, and makes us smile and laugh out loud every single day. Yes, I worry about his future…..but I also worry about the future of my 11 year-old and 8-month old who do not have Down syndrome. Thank you for sharing!

  14. Krishend76 says:

    I was told my child may have Down syndrome several hours after he was born and did not know for sure for several days. Although it was difficult and unexpected at first, I would not choose differently. He is an amazing little boy who lights up our life, and makes us smile and laugh out loud every single day. Yes, I worry about his future…..but I also worry about the future of my 11 year-old and 8-month old who do not have Down syndrome. Thank you for sharing!

  15. Sarahlynn says:

    Lovely! (I’ve been pregnant three times, had genetic testing three times, and have three amazing children, each of whom makes me unspeakably proud, and one of whom has Down syndrome.)

  16. Sarahlynn says:

    Lovely! (I’ve been pregnant three times, had genetic testing three times, and have three amazing children, each of whom makes me unspeakably proud, and one of whom has Down syndrome.)

  17. So true! And thank you! Our son Noah (http://noahsdad.com) was born with Down Syndrome and we had no idea until he popped up into the world! It’s been awesome! We do a daily one minute video every day on our website to show the world that it’s ok! If you know anyone who needs to have a little encouragement, our site is a great resource!

  18. So true! And thank you! Our son Noah (http://noahsdad.com) was born with Down Syndrome and we had no idea until he popped up into the world! It’s been awesome! We do a daily one minute video every day on our website to show the world that it’s ok! If you know anyone who needs to have a little encouragement, our site is a great resource!

    • Rick, you are sooooo obnoxious and soooo many people can’t stand you or your blog.

      BTW, I would never choose to have a child with DS. Would abort.

  19. Marie Bowen says:

    Thank you Amy Julia for this post. You bring important information that helps us understand the numbers and thanks too for caring that parents of children with Down Syndrome know that they are not alone.

  20. Marie Bowen says:

    Thank you Amy Julia for this post. You bring important information that helps us understand the numbers and thanks too for caring that parents of children with Down Syndrome know that they are not alone.

  21. I’m glad you found this information, and very glad it is now out there, Amy Julia.

    Had you heard that Adam has Leukemia? Another one of the risks associated with that extra chromosome. The weird thing is, we are discovering that there is far more financial and infrastructural support for kids with cancer than for kids with multiple handicaps. Pretty disturbing discrepancy, actually.

    • Brian, I am so sorry to hear that Adam has leukemia–I saw your email that said you weren’t around much due to family illness so I was wondering. I have another friend whose daughter with DS is in the midst of treatment too. How is he faring? And you? And Stephanie? Obviously don’t feel as though you need to leave all that info on the blog, but I’d love to offer whatever minimal support I might to you from afar if you want to email me with prayer requests or thoughts of how we could help. I am also really interested in the discrepancies you mention–if you ever want to throw some thoughts on paper, send them my way. Meanwhile, prayers and blessings to you all.

  22. I’m glad you found this information, and very glad it is now out there, Amy Julia.

    Had you heard that Adam has Leukemia? Another one of the risks associated with that extra chromosome. The weird thing is, we are discovering that there is far more financial and infrastructural support for kids with cancer than for kids with multiple handicaps. Pretty disturbing discrepancy, actually.

    • Brian, I am so sorry to hear that Adam has leukemia–I saw your email that said you weren’t around much due to family illness so I was wondering. I have another friend whose daughter with DS is in the midst of treatment too. How is he faring? And you? And Stephanie? Obviously don’t feel as though you need to leave all that info on the blog, but I’d love to offer whatever minimal support I might to you from afar if you want to email me with prayer requests or thoughts of how we could help. I am also really interested in the discrepancies you mention–if you ever want to throw some thoughts on paper, send them my way. Meanwhile, prayers and blessings to you all.

  23. Andy Crouch says:

    Thanks for this, Amy Julia. As Mgraves mentioned, I do use the 90% figure when I speak, and I believe I accurately describe that it’s only 90% of parents with an actual diagnosis who terminate. But the piece I didn’t have was the fact that only 2% of parents have an amniocentesis. That’s helpful and I’ll make sure to make that clear when I include these topics in my speaking in the future. We need to be both sober and hopeful about these matters and you help us to do so!

  24. Andy Crouch says:

    Thanks for this, Amy Julia. As Mgraves mentioned, I do use the 90% figure when I speak, and I believe I accurately describe that it’s only 90% of parents with an actual diagnosis who terminate. But the piece I didn’t have was the fact that only 2% of parents have an amniocentesis. That’s helpful and I’ll make sure to make that clear when I include these topics in my speaking in the future. We need to be both sober and hopeful about these matters and you help us to do so!

  25. Thank you for wrting about this.

  26. Is is best to abort babies with downs than to give birth and have them placed in mental instutution as down most often and abused and neglected.

    • Although it was common to place babies or children with DS in institutions a few decades ago, starting in the 1970′s, it became far more commonplace for children with DS to stay at home with their families. This family support is one reason that children with DS live longer now than they did even 30 years ago.

  27. I have a gand-daughter with Downs, she is 24, working two jobs and one is her business where she go to beauty salons and washes the towel and she would for WARC. I worry less about her than the other 5 so called normal grand children. She is healthy and happy and the joy of my life and her familiy and friends. She is an exceptional human being. We were told to instututional her at birth and we worked with her and she got the best care availabe and her mother has worked for benefits for the disable and she has not regreted one second for giving birth to her.

  28. What does having a Down baby do to your insurance? It’s been several years since I was involved, but in the past some families had difficulty getting health insurance for their kids if they lost a job or switched, and in a very few cases some families bumped into the lifetime payout limits (which should go away under the Health Reform bill).

    What is your experience?

    • We have had the same insurance since Penny was born, so I don’t know how it impacts insurance in general terms. For most people I know here in New Jersey who have children with Down syndrome, insurance has covered some therapies (some are covered through the state) as well as the routine and major medical expenses. But I don’t have a comprehensive answer.

  29. Gee, I really want to raise a kid with Down Syndrome! Said no aspiring parent ever…


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