Decreasing the Abortion Rate of Down’s Syndrome Babies

We have four children.  I’m 34.  I’d like to have a fifth baby, sometime in the relatively near future.  If that happens, I’ll be at least 35, the age where excessive “care” must be taken of expectant mothers, as my OB recently warned me, including a whole slew of tests that are deemed unnecessary in younger mothers.  I know the risks for certain birth defects increase as the mother ages, but I’m not really concerned about that, at all.  No matter what any tests might show, I’d carry and birth that baby, and love and care for him or her with delight. 

Honestly, I was really fearful of mothering a child with Down’s Syndrome until I met a friend’s brother who has DS.  He’s in his 40’s now, Tommy is, and his health is failing.  He lives with his parents in northern Arizona, so we don’t see him much any more.  But he is the most cheerful, hardest working, pleasant, gentle, attentive, loving “young” man one could care to meet.  His love of Elvis and his hand-drawn cards for my hubby and me softened my heart, and gave me peace;  I knew I’d be blessed if any of my children were like Tommy.

A couple of weeks ago, in the Arizona Republic newspaper, I read with alarm about the abortion rates among mothers expecting a child found, through prenatal testing, to have DS.  The story centered around a doctor who is also the father of a DS son.  He is among those advocating for better education of parents expecting DS children so as to decrease the abortion rate of DS children.  Shockingly, the current abortion rate is an atrocious 90%.  The article points out that most doctors do not give a well-balanced picture of what life is like, parenting a DS child;  they nearly unanimously point out the negatives, painting a much more hellish picture than what real life bears out. 

Increased prenatal testing and genetic testing really calls for more genetic counselors and health professionals who understand each disorder, and who can give parents a better understanding of what life would be like, parenting such a child.  Now, I’m against abortion under any circumstances*, but any efforts that can be made to at least decrease the abortion rate is, in my book, at least a partial triumph.  Zero percent is ideal, but, say, 8% is far better than 90%.

Not surprisingly, the article also discusses the ethics of producing “designer” babies.

Besides testing for Down syndrome, prenatal tests can be used to predict the likelihood of a child developing cancer, arthritis, diabetes or other diseases. Some parents choose in-vitro fertilization as a way to test and select embryos that lack the genetic makeup of certain diseases or have perceived desirable characteristics. As testing advances, so do the issues of education and ethics.

The article ended just as I hoped it would:  pointing out that disabled people can have a softening effect on those around them.  My children aren’t disabled, but one has a learning disorder, and two of them have severe digestive disorders, and that has really alerted me to the ramifications of such problems, and turned all of our family into advocates for each other, and for others with similar problems.

Kim Newman of Queen Creek said she still recoils at the manner in which a doctor described what to expect from a child with Down syndrome.

Prenatal tests showed her infant daughter would likely be born with Down syndrome, but Newman never considered having an abortion.

“He said your child will have a poor quality of life and she will live with you forever,” Newman said. “He described it as if I had a monster in me.”

Newman, who declined to name her doctor, acknowledges that caring for her 2 1/2-year-old daughter, Kairi, has been a struggle. The girl has had open-heart surgery, arthritis and slow cognitive development.

Still, Newman said Kairi has helped her and her two other children become more open to life in other ways.

“She was a blessing because she softened all our hearts,” Newman said. “My other kids now stand up for people with disabilities.”

From my perspective, there’s nothing positive to be gained from aborting a disabled baby, and a great deal to be lost — not just the life of that individual, but the lasting, positive impact s/he has on the lives of those around them.

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Normally, I’m all for nearly-free speech in my blog, and welcome discussion, but anyone who tries to talk me out of this stance, or ridicule me for it will find their comment summarily deleted.

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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on December 10, 2007, in Birth, Christian Living, Medical Stuff, Motherhood, Parenting, Political Thought, Pregnancy, Sad Things. Bookmark the permalink. 28 Comments.

  1. Because I work with disabled kids, I’m often surprised (and horrified!) at some things doctors say and do. And don’t even get me started on the general public!

    Every single child I’ve ever worked with has been a miracle. Each one has taught me something, changed me in some way for the better. 90%?? That’s unbelievably sad.

  2. Wow! 90%?! Where do we sign up to save one???

  3. Perspective. Not all is rosy in the land of raising a DS person. My brother is 10 years younger than I. My parents are in their 60’s. They are concerned with what happens when they are too ill to care for him or when they pass on. The state run homes are not great. He volunteers some. He has no job or real independence. My parents have a child in a grown man’s body, this responsibility on them for almost 30 years now. He has been relatively healthy. I don’t think abortion is the answer nor would I have wanted him aborted years ago. This is different than raising a normal child who will eventually move away. It is a HUGE responsibility. And as a sibling, well, there are all kinds of emotions. And guilt.

  4. I am also against abortions in all circumstances … we’re seemingly a rare breed.

    My mom’s doctors wanted her to have all kinds of prenatal tests because of her age (she had me when she was 37, and back in 1978, that was a lot more unusual than it is now), but she refused. She said she’d have me no matter what.

    Wow … a fifth? That’s awesome. I want more as well, but I don’t know about the $$ aspect of it. I’m leaving that decision up to God and my husband.

  5. I was crying as I read this. Having Kiko was such a huge wake-up call for me and made me understand that no matter what tests the doctors do and what precautions are taken, you can still end up with a disabled child. You end up with what God gives you. I am so grateful that Kiko has defied expectations and appears to be developing as an average child. What would have happened if we had given up on him when we were told he would be disabled? Not that we would have done. After he was born, I thought: “You may have disabilities but you’ve got us in your corner.”

    My friend’s son was diagnosed with Down’s Syndrome in the womb, and turned out not to have it – he is very small for his age but is not disabled. I knew a girl when I was a kid who was thought to have cerebral palsy as a baby (as we thought Kiko had) and was given up for adoption. She grew up fine, with no cerebral palsy at all. It makes me so sad to think that parents take these test results as the written-in-stone truth and take such terrible measures. Every child is a blessing.

    It’s a coincidence you should post about this because I’d just been thinking very seriously about this topic. If I have another child, it will be born when I’m 35 at the earliest, and I would refuse the Down’s Syndrome tests. It’s made me face the prospect that I could have a disabled child, and quite honestly, I don’t think I could cope. Other people probably think I’m crazy for taking this so seriously but our experiences with Kiko have made me see a whole other side to having children. What I’ve also come to understand is that every child has *something*. Nobody is 100% physically and mentally perfect. Why should we expect that? Anyway, the upshot is, I probably won’t have another one, but abortion would never be a consideration either. I hanging out for a message from above right now!

  6. I worked in one of those horrible institutions for developmentally disabled adults, and my most treasured photos, after my photos of my kids, are of some of the residents there.

    There they are on my wall:

    Sandra, who though labeled “mentally retarded” had a photographic memory and a rapier wit, though her severe cerebra palsy made her speech difficult to understand.

    Sharon, who though non-verbal was able to make herself understood, and understand me, well enough that it was six months before I learned that she was deaf! She was a night owl, and I worked nights, and Sharon was a fun companion on those shifts.

    Geneva, with her hauntingly beautiful eyes and her radiant smile that never failed to lift me. My feet never touched the ground when I was with her.

    Tony, with his passion for cars and Coca-cola and his easygoing, pleasant compaionship.

    Chris, who had to be taught a new hugging technique to keep him from bowling people over with his joy at seeing them. He lived in the Now, was always ready to forgive former wrongs, and was ready to love anybody willing to accept his love.

    And Myron, my beloved and dearest Myron. Words can’t express how much joy I got from caring for a non-verbal man that the rest of the world would only see as “deformed” and “retarded”. I haven’t seen him in nearly a decade and I miss him every single day.

    Seeing a disability and not seeing the person is like looking at a donut and seeing only the hole.

  7. Karen that was a great post! I am right there with you on being completely against abortion! Children, all children, whether “normal” or disabled, are a gift from God and should be treasured.

  8. I have a 2 1/2 year old brother with DS. He brings us so much joy and love. He’s such a blessing. He’s kid number 10 of 11 in our family (he has a twin sister who’s 5 minutes younger than him). We did not know prenatally that he had DS, but even if we did, it wouldn’t have made a difference.

    My mother and I are writing a book about DS in hopes to change the views that doctors and professionals tell most people – their views are so messed up most of the time.

  9. Both our children (still feels weird to be saying “both”) were born when supermum was over 35. On both occasions, we had to make the decision about having the Downs test or not. On both occasions, we decided not to. I can’t speak for supermum but having a cousin with Downs would make it difficult if not impossible for me to contemplate a termination. With respect to dudelet and the newly arrived dudelette, we agreed to deal with what we got and be grateful. I have to be honest – I’m relieved (knowing what my aunt has been through) that things turned out the way we did.

  10. looksgoodinpolkadots

    I share your view. There is NOTHING that would cause me to terminate a pregnancy. Even knowing that my child had zero chance of survival, I would let the pregnancy continue and leave it in the hands of our maker. It is quite disturbing to hear so many Doctors and women talk about selective termination. Perhaps I feel so strongly because I always wanted a large family and it took a great deal for me to have children. Maybe going through infertility and the fear of NEVER having a child has put me into the mindset that I would love and cherish whatever I ended up with.

  11. I could not have said it better.Thank you for your blog. My beautiful 2nd son was born 9 years ago with Down syndrome and I am blessed everyday to have him. (I was 35 when my first son was born and 39 with my second.) I turned down all the testing with both. Thank goodness, and even though I would have never aborted, just waiting to hold him in my arms before knowing his diagnosis was better for me.

    I feel for the families with older children and siblings with DS. They have had many challenges that our kids do not have. Our kids, I’ll use my son as an example, has gained so much with Early Intervention. My son got A+ care in Arizona with all the therapies available to him. It makes them higher functioning children. He learned his letters and numbers before his older brother did. He was also signing them in sign language. He is now a third grader and loves to read, and is very social with the kids in his class, both in the typical classroom and his special education class. He has no limitations. I feel that our generation of parents with children with special needs know the sky is the limit, and are working on better ways for our kids to succeed into adulthood. Just check out some of the wonderful camps and living facilities where our kids can work and live. They are far and few between, but they are out there and growing in number.

    In closing, ask my son what he wants for Christmas? “Presents…. and……food.”

    Lori

  12. Great post.
    I recently watched the special with the couple who had the 7 children, why the name escapes me now I don’t know. They were asked, as two of their children have some special needs-don’t we all- if they would have changed their mind about selective reduction. The mom had tears in her eyes and said “look at them. They love life more than anyone I have ever met”. I think any mom could relate that that is a dumb question.
    Challenges come in all types of packages. We try to avoid them, kill them, eat them, drug them but in the end they are what makes us better people.
    Sorry for the too long comment. 🙂

  13. This is sooo sad. I’d really hate to have to explain to God someday why I didn’t care for his little angel. The idea is that you don’t get to choose, He does. I just brought my beautiful baby girl Anna home from the hospital. She was born 5 months ago. She has had a rough course, and we almost lost her a few times due to heart failure and lung issues. She had open heart surgery in December. We refused the tests and had no idea that she had Down syndrome. It wouldn’t have changed anything. I know that she has already touched our lives and caused us to grow in ways we’d never known possible. I cannot imagine not having her and loving her just because she has Down syndrome. Those who abort these precious angels and missing out on a true blessing from God. It has not been easy but it has been worth every single bit of it.

  14. What a great testimony, Kim!! Glad to hear she’s home and doing better. 🙂

  15. Thank you Kim, for your comment. I’m happy you got to take your baby girl home
    from the hospital.

    God’s blessings on your motherhood,

    ~Karen

  16. Even though I was very aware of high abortion rates when parents find out they’re unborn child has Down’s, reading this article was very hard for me.

    My nine year old sister has DS and she means the world to me. It makes me sick to hear how little information doctors give to parents who are expecting a child with DS. My parents didn’t know that Alice was going to have Down’s, but even if they did, it wouldn’t make a difference.

    What really gets me, is that these parents are so careful to not have a disabled child, but what would they do if their “healthy” child had an accident and was left completely paralized? Would they stop loving them? Would they give them up for adoption?

    Having a disabled child doesn’t have to be negative. Disabled children can live the same lives as the rest of us.

    Alice, for example, is in mainstream school, she plays the cello, she dances, sings, reads all the time, she is the most popular girl in her class, she’s no different to anyone else her age.
    I’m not saying it’s all plain sailing, but it’s certainly not as bad as many fear it would be.

    As for the future? Well I completely believe that Alice will have a job, her own house, her own family, and her own life, seperate from our parents. I don’t think for one minute that she’ll have to live with them forever.

    Thank you so much for writting this article Karen, its really nice to hear you talking so positively about the potential of having a disabled child.

    Kate

  17. I am 19 years old and I am doing a school project on Abortion and that is howI stumbled upon this sight and well I couldn’t help but notice that all of the comments are mainly against abortion..I agree and all don’t get me wrong, but what about in a case of rape ? For example what if a 12 year old was raped by her father or brother or anyone for that matter, how is she going to deal with that at the age of 12 ? She is still a child herself. I am still against abortion and all but not when it comes to the mental health of a teen or need I say it, a child.

    • I know this is a reply years & years later, but I had to. In what other crime, does the child of the criminal get a death sentence? Kill the child who is born from rape??? Makes no sense. I have a friend who is adopted. She is a loving mother of 3 bio kids & 2 adopted kids. She was a “product” of rape. Her 12 yr old mother was raped by the 35 yr old next door neighbor. I am thankful every day for her friendship—and the fact that her own mother (and grandmother) chose life. Each time she hears “what about rape” my friend realizes society thinks she has no value. Yes, it is a terrible thing to victimize a 12 yr old child. It is also terrible to further victimize her by forcing her to kill a baby. Adoption is still a good choice.

  18. The reason the tests are important (even if it wouldn’t change anything) in my eyes is so the family can be prepared. It’s important for the doctors as well to be able to plan the birth in some cases (some babies with certain conditions don’t do well with a vaginal birth). I would want to know and be as knowledgeable and prepared to hit the ground running with my new joy.

  19. I agree with you completely. God bless you for publishing this. I am also 100% pro-life. I am not sure I could choose an abortion even in my own life were in danger.

    I recently came across the blog of the mother of a DS girl who is very pro-choice regarding DS. What was most apparent to me reading that blog was her extreme denial. Despite the fact she considered an abortion (though did not choose one) during the last week abortion was legal in the state of Missouri, she denied in several places on her blog DS babies are usually aborted mid-second trimester. That is simply factually untrue. 16-18 week old DS babies are murdered routinely, but she cannot even admit those facts. Very sad, disturbing person.

  20. Hi, I too was horrified by the 90% abort rate that is going around and riling everyone up.

    I just read an article that cited another statistic,
    its on abc news

    http://abcnews.go.com/Health/story?id=5729168&page=1

    It says that only 13% of downs pregnancies are diagnosed, so we have to take the 90% from the 13% of diagnosed preg.

    So, maybe the real statistic we should consider is that about 10% of all downs syndrome pregnancies end in abortion.

    Not that i can live with abortion of any, but 10% is much better than 90%.

    God Bless!!

  21. I think it should a woman’s choice to abort a child regardless of disability or not. I totally understand a woman’s prospective on aborting a child that will have a less than stellar life.

  22. Karen, we are all going to have less than a stellar life. Life is not perfect and through our sufferings we become more Christlike, if we choose to offer them for God’s greater Glory. The suffering felt by many women following their “choice” to abort, whether the child has D.S. or not, is overwhelming. I am more than blessed to have a child with down syndrome. He has a sister with Type one diabetes. This disease, diagnosed when she was six, as been far more challenging to deal with than Down Syndrome. Both have given me the opportunity to trust in God’s amazing goodness. Why have I been given this special job to do on my short stay on Earth. Hopefully with His help I will do it well.

  23. Mio figlio Paolo affetto da sindrome di down è la ricchezza della mia vita suona il violoncello con buoni risultati fa attività sportive canottaggio,nuoto,basket
    mi ha dato il valore piu grande della vita :
    il suo amore
    ciao

    • Thank you so much, Sergio, for your comment. I know the barest bit of Italian, but had to go to a site to get the translation. Here:

      My son Paul’s affectation from Down’s Syndrome is the richness of my life. He plays the cello with good results. His sporting activities are canoeing, swimming, basketball. He has given me the value of larger life: his love.

      That made me want to cry. My many blessings to you and your son. You are a good father.

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