31 for 21 – Pregnancy terminations of unborn babies with Down syndrome

Sorry for the long delay in posting – my ds13 returned over a week ago from a month long visit in the US, and brought me a new (used) laptop with him.  This was something I had been anticipating with great eagerness since my computer has been out of commission for two months.  Ironically, the day he brought it home and I turned it on to use it for the first time, our internet service was cut off – when we registered for our phone and internet service, we authorized automatic deductions from our bank account.  The internet service provider broke off from the phone company and now needs a separate authorization, but didn’t tell us – they just cut off our service!  We figured out what happened when we tried to log on and got a message from the internet service provider informing us that we needed to take care of payments to have service.  That took a week.  It is so nice to finally be online and to have a computer again!!


Today is the Day 29 of the 31 for 21 blogging effort to raise awareness for Trisomy 21, also known as Down syndrome.

When I was in the NICU with Yirmiyahu, after the baby in the isolette next to him died, the next baby placed there was a very tiny preemie.  He was born at 23 weeks, and being able to see what a baby that young looks like was amazing.  He was so, so tiny but fully formed – he looked like a miniature baby.  The length of his entire foot was probably about equal to the tip of my pinky finger.  Looking at him and then at my baby, I thought about how babies at 23 weeks of pregnancy can still be legally aborted, and that most babies with T21 are aborted.  Yirmiyahu is lucky to be one of just ten percent of babies with T21 who make it to this world.

When my computer went down a couple of months ago, I lost the sites I had  bookmarked so I did a search to try to find a particular T21 site again.  In the process, I came across a board for mothers who had terminated or were planning to terminate their babies with Down syndrome.  It was difficult to read about so many women making this decision, and it was clear that this was a painful decision for many of them.

Something that many women wrote is that they felt it would be selfish of them to let their child live, to suffer from whatever challenges he would be born with.  One woman who aborted her baby made a statement that I found very insightful.  She had chosen to abort her baby even though there were no obvious health challenges in the prenatal screening other than T21, and wrote that she believes Trisomy 21 isn’t incompatible with life as much as it’s incompatible with society.

Isn’t that profound?   And isn’t it true?  The difficulties for our children with T21 don’t come primarily from the state of being born as they are – yes, there are physical and cognitive challenges that they will face.  But being faced with challenges is something we all can look forward to – not one of us will go through our lives without significant tests in some areas.  The real difficulty for a person with a disability comes from having to live in a world in which they are seen as inferior and incompatible.  As a society we are so uncomfortable with differences, that many people see it as laudable to prevent a child who will be too different from being born.

I believe that something that helped me to easily accept the news that our baby had T21 was being the mother of nine other children of a range of ages.  During the last nineteen years, I’ve learned that just every child is going to have his challenges, no matter how high his IQ or how robust his health.  A typical child may be made fun of, struggle with self-esteem, have learning difficulties – just because they’re born typical is no guarantee of their performance at any point in life.  However, when you have a typical baby, you’re congratulated – no one feels the need to tell you right after you’ve given birth that your child will one day face some kind of difficulties, though this is absolutely a fact.  But when you have a baby with T21, instead of congratulations you get warned about all of the probable issues upfront by doctors with sad faces.   This can be very depressing if you believe that doctors have all the information and all the answers.  I don’t believe that doctors can know the potential of any child, and since I know every child will have challenges, hearing about our baby having some more easily predicted concerns didn’t frighten me.

The clear message that doctors project, whether spoken or not, is that your child is a problem.  I’m not surprised that so many people choose abortion when faced with this attitude.  But maybe our children being born a little different isn’t really the problem?  Maybe the problem is a world in which it’s normal to believe that that people who are different don’t deserve to exist?  Maybe children – and adults – with differences are sent to this world in order to make the world a more loving and accepting place, to remind us that we’re all inherently the same even when we look different?

When I was pregnant, I read a blog in which someone shared about someone who had been told that their baby had markers for T21 and aborted her.  When the procedure was complete, they learned that their baby didn’t have Down syndrome, and the grief that they had aborted their healthy child was indescribable. This blogger wrote, but what about if their baby had T21?  Would it then have made it more okay to have killed her?  Does a child with Down syndrome deserve to live less because he may have health issues or cognitive delays at some point in his life?

Here’s a short and sweet video that I enjoyed – The Beautiful Faces of Children with Down Syndrome.

These children are our reminder that every single person has value and a purpose in being here, though their beauty and gifts are not often enough recognized in a world in which differences aren’t welcomed.


10 thoughts on “31 for 21 – Pregnancy terminations of unborn babies with Down syndrome

      1. in jerusalem they are a center in jerusalem that specializes in caring for Downs from birth. they have aprogram for the first year of life called mommy and me where you come once a week and meet with various professionals for treatment. i know it is far but mioght be worth coming for a few days if they would schedule something specially for you.

      2. I worked at shalva with the babies with DS in the early intervention room. They have wonderful therapies there, all free of charge!
        My friend is currently sending her son there, feel free to email me for details

  1. Not everyone is as strong as you are, Avivah, and you are very special and very strong, very wise as well. I think your children are very lucky to have such a mother and you have my admiration and respect. I always look forward to reading your blog.
    I don’t judge women who choose to abort, each must make and live with that decision, and yes, sometimes it is the right decision. I had a niece, very mentally and physically disabled, not T21, but severely handicapped, who passed away so horribly that the memory of it overshadows everything, it haunts us all to this day, it was that bad.. for her. And we loved her, we all loved her beyond anything. Her death was so bad and she suffered so, that it still, 7 years later, makes us physically ill, we still cry when we remember the horror of the suffering of her life and, especially, at her death.
    Hindsight is 20/20, I know, but if we had known what was ahead for this darling, much loved girl, we would have supported the termination. There was no need to test since my sister-in-law, who became an alcoholic after her child’s death, and died at barely 45 years old, another tragedy, was in her twenties and healthy at the time of her pregnancy. There are some things no one should suffer. I remember my sweet niece every day, I remember how she never spoke, but the first time she met me, out of the blue, to the amazement of all, she said, “Hi!” and I remember how they said she would never live past 8 or 9, but did in fact live to be 17 – yet it was a life of terrible suffering. We can never forget how she died. We would give up knowing her to have saved her that suffering, it was so bad.
    I am so glad that your little one is doing well, may he continue to be blessed and watched over by his loving family. You are lucky to have him.

  2. Beautiful Avivah! If Gd brings a child into the world, Baruch Hashem. Abortion is always the killing (terminate sounds so tidy) of a child, and as Jews one would have to really have a competent Rav to even contemplate not welcoming such a blessing.

    1. I think termination is accurate, even if it sounds tidy. I dislike the euphemistic terms that are used, like: letting go, releasing the baby (reminds me of the Giver), interrupt the pregnancy. They sound so beautiful and kind, and while I definitely understand the desire of mothers who are having an abortion to use these terms, I think it detracts from what is actually taking place.

  3. “Maybe the problem is a world in which it’s normal to believe that that people who are different don’t deserve to exist? Maybe children – and adults – with differences are sent to this world in order to make the world a more loving and accepting place, to remind us that we’re all inherently the same even when we look different?”

    Agreed. I’m afraid that I can not find anything other than deepest sympathy and compassion for those parents who terminate the pregnancy when they find that the child will be born with a disability (be this Trisomy 21 or anything else that it’s at present possible to test for). They will have to live with their decision for the rest of their lives…. And, well, there but for the grace of God…. If someone had told me how difficult life would be for my daughter at times, back when she was still in utero, who’s to say that I would not have caved in and decided I was doing her a favour by sparing her all the anguish ? And if “an expert” had told me back then that this is what they would do if they were in the same position…. Well, I would not fall for it nowadays, but back then ? Who knows….

    The world I would like to live in would be the world where, if any pre-natal tests were taking place at all, it would be with the express purpose of preparing the parents and the medical professionals so they were ready should the child have any additional needs. The parents would know to start learning Dutch instead of Italian, the professionals would be on hand with the appropriate guide books, and eventually, no one would even be able to comprehend what life was like in the bad old days when everyone thought that Italy was the only place worth being and people rerouted to Holland were considered second-class citizens.

    Possible ? I would like to think so ? In our lifetime ? Hmmmm…..

  4. I’m very late on responding as I catch up with the internet after a long business trip. But, I just read a great article on this subject that you might enjoy. http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person

    “The social model is the way I prefer to view the world. It’s the idea that a person with an impairment or illness is disabled by the society we live in because of all the barriers that are put in our way.”

    It’s a perspective I’ve never encountered before but she references it as the social model so there are probably more articles available in disability studies journals.

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