The more we know about Down syndrome, the less we understand

I read an article today on NBCNews.com regarding the new prenatal tests for chromosomal abnormalities. If you’ve been pregnant recently, you’ve probably been offered or have taken them (they can be done as early as 10 weeks pregnant).

“The test is called the “cell free DNA test” (cfDNA) and it looks at small amounts of actual fetal DNA in mom’s blood. Researchers performed the test on nearly 2,000 pregnant women and found that the rate of false positives with this new test was 10 times lower than with standard screening measures, which are done later in the pregnancy.”

I was offered this test (4 times) during this pregnancy and declined (every time) because, for me, it didn’t matter. Not only do I already have a beautiful child with Down syndrome, but I also know my personality and I’m more of a “deal with it when it happens person.”

Some parents are not this way — some would prefer to know ahead of time. In fact, I know several wonderful moms in the Down syndrome community who were happy that they knew ahead of time as it gave them time to prepare for their child in a way that suited them and their families. The article went on to discuss the positives on the test, but then added a balanced perspective that gave me pause:

“Not everyone is excited about advances in prenatal testing. Some pro-life advocates as well as families of children born with Down syndrome argue that these tests may spell the end of kids with Down syndrome and related chromosomal abnormalities. In particular, they worry that if parents are given news of a possible abnormality based on a more accurate test early in the pregnancy, that would encourage them to abort an affected fetus if further testing bore out the diagnosis.”

I don’t disagree with this statement — it’s true, the abortion rate for children prenatally diagnosed with Down syndrome is shocking and it seems that the earlier and more accurate a test is at diagnosing Down syndrome prenatally, the more abortions will occur.

But I think there’s something much bigger at hand here.

It’s not the earlier, more accurate tests, that will be the main cause for an increase in abortions of children with Down syndrome — it’s the fact that we’re making life and death decisions on an incredibly incomplete picture.

As I’ve discussed before, the technology for detecting Down syndrome is far more advanced than our understanding of what it means to have — or raise a child with — Down syndrome. This technology will only become more advanced as time progresses, which is why it’s more important than ever to promote the truth of what that diagnosis truly means, by:

Delivering news with up-to-date information and compassionate resources.

Sharing more than test results — but testimonies.

Sharing more than facts — but faces.

And sharing with scared new parents that a diagnosis is only a starting point of a story. And how can we make the decision to end the story after the first sentence?

As prenatal tests advance, our advocacy must advance accordingly — not to encourage people to know less about their pregnancies — but to help them understand so much more about their potential.

5 Comments

  1. Jeanette Davies

    Hi Lauren, I have a son who has down’s syndrome. He is nearly 16 and he is my son.That is the beginning and the end of everything I do. Recently however his disability, that is the down’s syndrome has been up for discussion. It is everywhere and as I cannot separate the ds from who my son is, because I see him for who he is, it feels more and more that when they are all discussing downs they are discussing my son. Yet I cannot marry the two images together, I do not recognise what they are saying. They are saying it applies to my son yet it seems alien to me. It is scary and when they are all talking about abortion and post birth abortion is is really scary. It struck me yesterday when I was at home teaching him and this is the commentary I heard. I couldn’t get the words to fit with the picture so I filmed him with the commentary. https://vimeo.com/87713093 Thanks for every you do and say Lauren x

  2. Scott Anderson

    Hi Lauren,

    Love, love, love every post you, ah… post. As parents of a 4-year old son with Down syndrome (and his adopted sister who is just 2.5 months younger than him), my wife and I always look forward to what you have to say – and always so well written. Keep up the great work.

    When Max was on his way, we too got subtly ‘pushed’ toward abortion. Because of this, Denise didn’t enjoy being pregnant, like I so wished she had. I wish doctors had more contacts readily available to provide for expecting parents who receive word they MAY be having a child with DS. “There’s a possibility your child may have Down syndrome. Before you make any hasty decisions about this news, here’s the name and number of a family who has a son/daughter with Down syndrome, and they have offered to speak with expecting parents like yourselves who would like to hear how things are going with them.”

    Maybe that’s a dream world. But after Max was born (there was no question about what we would do – abortion was not even a consideration for us), we were so glad we met with a couple moms who had children with DS. Hearing from someone who has been there… it makes all the difference in the world.

    That’s kind of the hope I had with this video we made…

    https://vimeo.com/77940385
    (“I Love Grilled Cheese or, My Brother Maxwell is My Best Friend”)

    …to coincide with Canada’s National Down Syndrome Awareness Week in November 2013. I thought, “If just one mom or dad who is potentially expecting a child with Down syndrome could see this… maybe it would help them to make a decision that could change their lives for the better.”

    Life is good. So much more so than we ever could have imagined. It just breaks my heart to think of those DS abortion stats and realize what people are missing out on.

    Take care.

  3. Jodi

    I loved reading your blog. It was very insightful. But, I do not think the test will cause more abortions. I think the doctors response and fears he or she instills about the after affects causes the abortions. The conversation with special education teacher do the same for some parents as well an that is why many disabled students are sent away. I love my disabled child. I love my disability. I refused the tests. I also changed doctors when I had complications and she said that “If I have a miscarriage. I have one. There is nothing to stop it, and I will have to deal with it. ” These are the people that need to change. The people who feel that they know it all. I am a special education teacher, and there are down syndrome people who because of ignorance have not gotten to shine. There are disabled people who are with cerebral palsy that should not have a third grade reading level because of a physical disability. Lets change the ignorance not the test. Lets change the perception of the people not the people. These children can learn and grow being as smart as regular students why not give them the chance. They deserve our love and support not our stereotypes.

  4. One thing your readers might not understand is that the high abortion rate (75-92%) is for prenatal diagnoses of Down syndrome only, and according to statistics, only 5% of women choose amnio or CVS ( I think that’s low). Overall the abortion rate is 50%.
    If most babies with Down syndrome are born to younger women simply because they have more children than the older moms who are more likely to have a baby with trisomy. As these non-invasive tests become more widely used, they may obliterate the complicated, later term amnio and CVS and soon prenatal diagnoses will be ubiquitous. We will consider it as normal as prenatal vitamins.
    If we don’t get the good news out there about our wonderful kids, that most likely will spell a large increase in terminations. http://www.thestar.com/life/2012/02/03/the_maternit21_ltd_test_could_make_people_with_down_syndrome_a_rarity.html

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