Would You Choose Abortion if Your Baby Had Down Syndrome?

I recently had an interesting discussion with someone on Twitter about whether women should choose abortion if an amniocentesis revealed that the baby had Down Syndrome. Understandably, many women do chose an abortion at this point in their pregnancy because they feel that they are not ready to accept the challenges of raising a child with special needs. However, I do not think that I would choose an abortion in this situation, primarily because I have multiple family members with developmental delays.

ABC news reported a few years ago that 92% of women who find out that their baby has Down Syndrome choose abortion. I’m not sure how reliable that statistic is, because the doctor the article quotes doesn’t explain how those results were garnered. But I don’t doubt that the number of women who choose abortion in the case of a Down Syndrome diagnosis is high. Raising a child with special needs of any kind, be it Down Syndrome, cerebral palsy, or physical challenges, can be difficult. Every family is different in terms of their ability to handle those challenges. It is not my place to say what decision is right or wrong.

This question reminds me of the discussion I had with many pro-choice Tweeters who answered the question “Can you be pro-choice if you woudln’t choose an abortion yourself?” Everyone I talked to said that the context of the situation would determine their choice, but they all agreed that every woman has to make the decision for herself. Whether or not I agree with someone’s decision, being pro-choice is ultimately about trusting women to make their own decisions.

What’s your take on the situation? If you found out that your baby had Down Syndrome, would you continue the pregnancy? What factors would influence your decision?

About Serena:
Serena is a freelance writer who enjoys baking, protesting, and playing with little dogs.

Comments

  1. Liam Smith (@AutistLiam) says:

    I can get pregnant (I’m a trans man) and if I were to find out that I was carrying a foetus with Down Syndrome, I would not abort that foetus.

    I *might* abort a foetus with anencephaly but I think that’s pretty much the only illness / disability currently diagnosable prenatally that I would consider aborting as the prognosis is so bad. A child with learning delays, I can learn to care for. A child with physical disabilities, I can learn to care for. A child who might need extensive surgery during childhood is still a child I could love. But a child likely to die within minutes of being born is a child I’m not sure I’m strong enough to bring into the world in the first place.

    I’m inclined to believe that many people who choose to abort rather than have a child with DS (and who would continue the pregnancy if they believed the foetus did not have DS) have not been given accurate information about DS, about the lives of people with DS and about any help and support available in their area for families with a child with DS. DS is not life threatening, it’s not painful and it needn’t stop a person having a full and successful life – I know people with DS who have degrees, who have jobs, who are happily married. And people who have DS and live with friends in supported living and work part-time. Having a child with DS needn’t be much much more difficult than raising any other child. Any child could have high care needs, you can’t screen for a child that will be easy to raise and never become ill or injured in such a way as to make them need long term care.

    I don’t condemn any person for freely making the decision to abort a foetus that is likely to be disabled, but I cannot help but think that the reasons for making such a decision are often rooted in ableism.

    • Thank you so much for your thoughtful response. I totally agree with you about Down Syndrome being a manageable situation. Every person has different ability levels, regardless of any developmental delays. And having a DS diagnosis does not mean that someone is incapable of having a productive, happy life.

      I think you make a really important point about ableism. Would you mind explaining that a little bit further?

  2. This is a really hard question. My mom had an abortion when she found out that should her baby be born, it would have a 75% chance of having severe learning disabilities. As a 42 year old mom at the time, she felt that she wouldn’t be able to handle the needs a child like that would have.

    I personally think that I would probably have an abortion as well. I wouldn’t feel any kind of good about this, it feels a bit like helping to produce only the fit, those who “deserve” to live, which is 100% the opposite of what I want. But I also don’t know that I would have the patience to raise a child that would require my constant care, meaning that I would probably have to quit my job.

    I don’t know, I’m kind of thinking out loud here, but that’s what comes up for me when I think about this question.

    • Juliana, your honesty is really appreciated – and I think your thoughts are in line with the 92% of women who choose to abort a child with Down Syndrome.

      I think that you make an important point about the quandry over not wanting to embrace a mindset that says certain people are worth living while others are not – and at the same time questioning your own ability to care for someone with special needs.

      Here’s a question for you – and it has no right or wrong answer. What if a family member received a traumatic brain injury that required constant care for recovery? I think Gabrielle Giffords is a prime example. Her partner has been incredibly supportive in helping her heal from her brain injury – and they both have a long road in front of them. What would you do if this was the situation, versus finding out in utero that your child potentially had a disability? I’m just curious – I’m not asking a any form of dismissal or judgment.

      • I think it’s valid to try to prevent the situation–including, if a woman so chooses, abortion. If one otherwise still ends up in the situation (test did not detect trisomy 21 and baby was born, an accident such as you imagine above, etc.), one can still embrace the relationship with the disabled person and love that person to the utmost. The two ideas are not incompatible, but people feel afraid that the love and care of a disabled child is inauthentic unless the parents would “choose” it.

  3. Women don’t make such decisions in a vacuum. Raising a Down’s syndrome child has some degree of practical and financial costs beyond those incurred raising a healthy child without a developmental disorder. Medicare and private insurance don’t cover all of the medical needs. The societal support (special education, appropriate educational mainstreaming with special ed support, existence of sheltered workshops and group homes for those DS adults requiring them, and so on) is much better than the support 40 years ago, but it isn’t complete, and accessibility to services varies greatly in different states / cities. Many women likely take into consideration the degree of family support, including the husband’s support, for raising a child with DS. If the husband threatens to divorce (or simply abandons) the wife, she may face a financial crisis, especially if she has to be the sole provider for her children. This is a common situation. More women might choose to raise a DS child if the societal practical/ financial support were greater than it is today.

    Decisions aren’t always based solely upon personal attitudes of ableism.

  4. I am the very proud mother of a 16 year old daughter with DS. Thank GOD I didn’t abort or consider any other option but give birth to this beautiful light of a child!! Yes, she has some medical issues. However, the constant joy she brings to this family is unmeasurable! I have been through heart surgery with her, neck fusion surgery, etc. but I am not bankrupt. Did we pay some money? Yes. Do I have to worry about the typical “teenage” issues, NO. I would not trade this beautiful third daugher of mine for all the tea in China. She is my constant reminder that life is, indeed, worth living!!

    • I am very glad that you have been able to bring up your daughter with DS. I have a friend whose 40-ish year old younger brother has DS, and their father was one of the pioneers in advocating for independent-living services for adults with DS.

  5. Never, who are we to choose who lives or dies. Imagine the societal changes that coud have been put in place if 92% of women had not chosen to abort, a bigger community of families with children that have down syndrome means a bigger number of people calling for more support, eventually these calls would have had to be answered. It is my belief that prenatal screening and selective abortion as offered an alternitive to the institutionalization of people with down syndrome, It is no longer needed because the number of people with down syndrome as dwindled since the introduction of these procedures. let us not forget that everybody in our society is diferent in thier own way. People with downs syndrome are brilliant teachers of this difference in addtion to hope, determination and diversity.

    • I don’t think as a prospective parent I owe it to existing children with disabilities to have one myself so that their community can be bigger.

  6. My wife and I are going through the exact same dilemma right now.

    We’re expecting our third child and the initial results from our 13wk ultrasound came back with a 1/20 chance of the baby having down’s syndrome. (down from a 1/500 background risk for her age group)

    We’ve tried for a year for this baby and wanted to bring another little one into our lives. So, needless to say, this is heartbreaking and a horrible thing to have to consider.

    If the decision were all about love, we would welcome the little one with open arms and not think twice.

    However, in the real world, there are other things to consider.

    One of which is finances. I’m self employed and make a comfortable salary. The problem is, we’re on the cusp where we make too much for medical assistance, yet too little to not have major concerns about how to pay for it.

    We have private medical insurance, but the “worst case scenario” in a child without down’s, has to be expected in the first few years of life and maybe beyond. This would mean a max out of pocket that is roughly 30% of my yearly income. This sustained over a few years would bankrupt us in short time.

    Yes, something could happen to the other children or my wife or myself, but it’s different when the worst case medical scenario becomes a high probability right off the bat, it’s not a good outlook.

    This is just one of many issues we are facing and have to consider.

    Others are community support, programs, and… well, the fact that 9 out of 10 babies diagnosed with Down’s are aborted, what will come in the future? Will these programs dry up and we’ll be left in the cold?

    Granted, the amnio next week could come back all clear. But, we need to consider these things ahead of time, so we’re not making life decisions in haste or out of panic.

    Our hearts tell us to just jump and believe it will be all ok, but our brains are telling us it’s too big of a risk to our family.

    Either way, it’s heartbreaking.

    • Troy, my heart goes out to you and your family. This must be a very hard time waiting for those amnio results to come back. I’m sorry that this is the predicament you find yourself in, and I am sending the best thoughts to you and your wife.

    • Troy, as a mom of a 4 year old with DS and a 3 year old typical child, I can tell you the costs are great for both. They are both equally as rewarding and as in all situations, they are both the individuals they are not because of our “control or doing”.
      I would encourage you to browse our blog, email us, I am talking with a family who is having their 4th child this august and he will be born with down syndrome. We can never be so bold to think we are in control of what someone’s life will cost or so short sighted to think we can foresee that persons worth in comparison to that cost. My son has brought changes to the schools in our city, he has caused our friends and community to see a bigger picture and to strive to be and do better every day. I just want to encourage you by saying having this baby will not bring regret, not having this child… at the very least you will always wonder.
      http://www.theculpeppers.com
      Suzanne

  7. Troy, you have really given me food for thought.
    It’s quite easy for me to say Never! But then I live in the UK where medical assistance and support are not deciding factors as they come free.
    I really feel for you and your wife in this situation and i am sending the best of wishes to you and your family. No matter what the outcome.

  8. BTDT, kind of says:

    I would terminate. Years ago, in fact, I terminated for an unrelated fetal syndrome that was very rare and has a very low survival rate. I thought then, “Oh, if it were just DS or spina bifida, I would keep it!” but now I’m not so sure. (In the several years that followed, I had several wonderful healthy children.)

    One thing I know now, raising even healthy, normal kids is HARD! (fortunately they do grow up and it does get easier, which is the light at the end of my current child-rearing tunnel. lol)

    But anyway, a lot of the things I worried about back when I ended my first pregnancy would be the same, except also informed by the pressures of my existing family: I would worry about my family’s finances, and about the stress it would cause my marriage. Childcare for “date night” is expensive enough without having to find someone capable of dealing with special needs. Would the medical care/therapies bankrupt us? Would we shortchange our other kids?

    And… right now I am enormously looking forward to a time when I don’t have to haul children out with me every time I want to leave the house. Liberation at last, after several years of hauling caterwauling preschoolers and diapers hither and yon!

    Dear heavens, I think I might even be able to hold down a paying job again.

    but AFAIK, kids with Down syndrome may or may never reach a point where they are sufficiently independent for any of that. Yet they go thru all the trials and urges and sheer SIZE of puberty. I smile every time I see an adorable toddler with Down syndrome… but do tell me what that’s really going to like when he’s sixteen? Or twenty-five?

    Also, we live in a time of gov’t austerity, and I really never want my family’s financial well-being to rest so much on how generous or stingy the local government feels like being.

    Nothing but admiration for the people who stick it out, but it wouldn’t be for me.

    • I found out yesterday on my way to work that i have a 1 in 10 chance of having a child w downs. This number, compares to my first is terrifying!! Which was 1 in 5000! I feel like the dr has just handed me a bill of death and ive been writen off. Ive never been more scared, confused, or sad in my entire life! My husband and i are not wealthy by any means. We live paycheck to paycheck, but we still mamage to show our only daughter a good time every once and a while. My husband works as a fire fighter/ paramedic and works long hours (24 hr shifts to be exact). We dont have good insurance. Im really struggling with rhe decision im afraid we are going to have to make. I dont want to neglect my daughter. I dont want my perspective child to have to go thru numerous invasive surgeries. I don’t want my family to have no money in the bank to barely afford groceries. And our govt wont help us. The state ins we do not qualify for, we are not considered “low income” family. So that option is out. We also don’t h. ave a good support system where we live. Both sets of grandparent’s are not avail for ” time away” for some mommy and daddy time. Raising my daughter is changeling enough. I feel like ive already made up my mind by ending the pregnancy. But i feel so selfish for feeling this way, and i dont want my husband to look down on me for having these thoughts or feelings. I just wish all this were a nightmare and it wouldd go away when i woke up. I dont know what i want, but i know what im afraid of! Can someone out there offer me some advise? Its so terrible to think, but i dont think i can do this. Im so so sad!

      • My brother and his wife just had their fourth baby on Monday. They are waiting for the bloodwork to confirm their newborn son’s DS diagnosis. He has every marker for DS, but otherwise is very healthy, with a strong heart and an adorable chubby face.

        Their first child is deathly allergic to several common foods. Their second child has celiac. Their third child is perfectly healthy, but gets into everything and causes all kinds of trouble with his high energy rambunctiousness.

        If their little baby boy does, in fact, have DS, it is just one of a million challenges that any unique individual can present to his or her parents. If your baby has DS, then you may face certain challenges, but not others. That’s what being a parent is all about: unconditional love. You could have the most beautiful and brilliant child, only to see her embrace drugs and become full of hate and despair…you could have the most athletic and powerful child, only to see him lose his legs and his desire to go on after a car accident. To love a child is to accept uncertainty and the possibility of pain and suffering, as well as joy and peace.

        This little life is yours to protect and nurture and adore. A mother’s love is the fiercest and most powerful love in this world. Love your baby with all your heart. When you let love lead the way, you will have the strength and the serenity to face any challenge.

        • My wife was told this morning that our new born may have DS, I want to keep this child no matter what, I was never around for my other 2 healthy children so this would be my chance to be there for the third one, I told her we must leave it in God’s hands.
          Honestly, I don’t know if I’m ready for this, but like she say’s, we are at a certain age and my health is not all that great, our parents are old as well, what if something we’re to happen to us, who then will love and take care of this child. She does have a point but no test is 100percent, what if she has the amnio done to find out that the baby is healthy and then as a miscarriage.
          As you can see it’s confussing, What would you do?

      • Kristin…As a mom of a 4 year old with DS and a 3 year old typical child, I can tell you the costs are great for both. They are both equally as rewarding and as in all situations, they are both the individuals they are not because of our “control or doing”.
        I would encourage you to browse our blog, email us, I am talking with a family who is having their 4th child this august and he will be born with down syndrome. We can never be so bold to think we are in control of what someone’s life will cost or so short sighted to think we can foresee that persons worth in comparison to that cost. My son has brought changes to the schools in our city, he has caused our friends and community to see a bigger picture and to strive to be and do better every day. I just want to encourage you by saying having this baby will not bring regret, not having this child… at the very least you will always wonder.
        http://www.theculpeppers.com
        Suzanne

      • Kristen, I am going through a similar situation. I have recently been diagnosed with toxoplasmosis and am 4 months pregnant. I am asking myself the same questions about whether to keep the baby. I am afraid of the issues my baby may have. However, I don’t think I could live with the guilt and the constant wondering, “what if the baby would have been healthy?” The odds are not against you…there is much less than a 50% that your baby would have DS. I also believe that things happen for a reason. Perhaps having this baby, even if it has DS would bring something important to your life that you would never have known if you aborted it.

  9. Somer Myers says:

    I found out at 19 weeks that my child would have DS. We chose to continue with the pregnancy. This is something my husband and I decided on after talking. We were actively trying for a child and she is who we made. I find it interesting that most people think it’s hard to raise a child with DS. This idea of constant care scares them. Um, all child need constant care. She’s almost 9 months old and there are days where I don’t even think about DS. Sure she’ll be behind in some things but at the end of the day, she will do everything because we will give her the knowledge, resources, etc. to be her best. Was it scary at first, absolutely. Then she came in to our lives and all I kept thinking was, “This isn’t so hard. This isn’t so scary.”

  10. No good choice says:

    How dare anyone judge a woman who wants a child and chooses to not have it because of ds.A baby is a baby and that mother longs for her child. She would love her child no matter what. However most woman who choose not to have a child with ds do so because they think about the life that child would have. Here are some percentages 5-10 leukemia  10-15autism 50heart defect 70 hearing loss Alzheimer’s, schizophrenia, bipolar speech, MR, social and other conditions are all real possibilities on TOP of Ds and MR. A woman who want to be a mother will love her child no matter what for her to choose not to bring that child into a life of pain is a sacrifice she made through tears and agony.  She put her own wants aside and thought of her child and it’s quality of life. Most mothers would do anything to take their child’s pain away. Most ds cases are not mild. Assisted living Homes and institutions start take ds children as early as 12 years old. Adoption is option if a woman does not want to have a healthy child but a mother wanting a child who finds out her child has ds does not improve the quality of the child’s life by putting it up for adoption. For many pregnant woman who choose to terminate due to ds the decision had nothing to do with them but the quality of life for their child and the choice was heartbreaking for those woman. They did not choose abortion as a form of birth control. They are not cold, selfish evil or misinformed. Most children with ds are not the poster children we have seen in recent media.  Even if it is a mild case so many very painful risks are associated with ds.  We live in a time where technology is available to allow a mother the choice to watch he child suffer or not take the additional risks. Stop attacking women who made a heartbreaking, selfless choice and focus on researching prevention and cures. Very few people go into pregnancy saying I would like a child with birth defects and has higher risks for cancer and so many more devastating issues. Termination for ds is not horrible it’s simply an act of pure selflessness on the parents part. It is chosen with heartache and is a choice no parent should have to make but is grateful that they were able to make it.  

    • Ableism Is Wrong says:

      The tone of “No Good Choice”‘s post disturbs me because of its conflation of disability with suffering. Yes, people with Down Syndrome have various health problems, but the miracles of contemporary medical technology include surgery done under anesthesia to correct heart defects, early intervention programs to encourage intellectual growth, and medicare funding for various therapies.Moreover, according to research conducted by Brian Skoto of Children’s Hospital in Boston, 97 percent of people with Down Syndrome surveyed reported that they liked who they were. I feel that their perspectives should carry a lot more weight in this discussion than those of ablebodied parents who terminate based on their perceptions of disability. it’s understandable that many women are motivated by feelings of love when they terminate-our society teaches its members that disability is horrible and to be avoided at all costs. Many good parents, when raised under that logic, will terminate in order to protect their child. However, that doesn’t mean that such choices should fall beyond reproach: the idea that disability causes untenable suffering is a backward concept, and its impact on the decisions people make in regard to their unborn children need to be explored.

  11. I had a first trimester screen with a 1:5 chance for a trisomy 21 baby. I chose not to do an amino due to risks associated with it. My daughter was born with Down Syndrome. I look at her and feel that my choice not to go through with an amino and termination was right for me. I cried everyday for over a week, sad, that she wasn’t a ‘normal’ child. Care and early services are far better then what they used to be. I love every inch of my little girl, extra chromosome and all. I don’t look down on anyone choosing to terminate. It’s not an decision either way.

  12. Huytongirl says:

    I am a pro-choice feminist and this used to be a simple issue for me: of course any woman has the right to abort for any reason whatsoever. But I was diagnosed with a form of autism a few years ago. And I keep reading about the search for the gene that causes autism. And the net is full of the woes of parents who have autistic kids (and very little about the lives of autistic adults). So I can see the day when a test for autism is offered to pregnant women, with the option to abort. I can imagine a pregnant woman being told, “Your child may never learn to speak. Even if they are high-functioning, they lead lives of loneliness and unhappiness. A few of them are geniuses, though they will probably never marry or have children.” Because this is how the world sees us. It’s ignorant and bigoted, but it is the popular image.

    So, if I’m asked if I agree that a woman is right to abort a child on the grounds of disability/difference, the question really is whether it would have been better if I myself had been aborted.

    The answer is to improve society for those of us who are not regarded as normal, not to prevent us from living in the first place. Pregnant women shouldn’t bear that burden. It’s for all of us to make this world welcoming to people who don’t fit in.

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