Tuesday, June 16, 2015

The worth of Down syndrome

Upon delivering my first child 11 years ago, I heard the words “Down syndrome,” and my world collapsed. Visions of children sitting passively in a corner watching life go by, not participating, kept me awake those first nights as a mom.

It didn’t take me long, though, to figure out that my ideas were based on negative, outdated information that had nothing to do with the reality of life with Down syndrome today. My daughter April is an active, outgoing girl. She’s my nature child, wildly passionate about anything with four legs. Although April uses few words, she’s a master communicator. Through her, I’ve learned that Down syndrome is not the scary, terrible condition it’s made out to be.

But while governments (rightly) ban gender selection, selective abortion continues to be encouraged for children with Down syndrome. In the United States and abroad, screenings are a routine part of health-care programs, and the result is the near-elimination of these children.

When pregnant with my daughter Hazel, tests showed she, too, would be born with Down syndrome. I was shocked when an acquaintance asked me why I did not choose abortion — as if she were a mistake that could be easily erased...

The unspoken but obvious message is that Down syndrome is something so unworthy that we would not want to wish it for our children or society...

Recent research in Britain indicates that introducing the NIPT leads to a higher uptake of screening. With termination rates varying around the world from about 67 percent in the United States to an average of 92 percent in Europe, this will promote even more intensive de-selection of fetuses with Down syndrome, which in turn will negatively affect their position in society.

I don’t judge the women who make the choice to terminate. It must be hard to withstand the bias of medical professionals, people you trust most with your health and well-being, when you’re pregnant and vulnerable. A 2013 study reports that parents are 2.5 times more likely to have a negative experience on receiving the initial Down syndrome diagnosis than to have a positive one. One in four participants said they had been encouraged by a medical professional to abort, and many received inadequate information and little compassion...

Down syndrome does not cause human suffering. The real danger lies in voices that claim our children need to be tested before we can decide who is worthy of life. Women are not incubators of socially preferable descendants.

As a mom, former president of a Down syndrome society and spokesperson for Downpride, a grass-roots parent group, I find most people with Down syndrome possess an enormous zest for life, making them very pleasant company, and there are many firsthand accounts describing the ability of people with Down syndrome to bring simplicity and openness to communities. But these aspects of the condition remain understudied. One 2011 study did show that the brothers and sisters of people with Down syndrome overwhelmingly feel love and pride toward their siblings; participants also credited having a sibling with Down syndrome with enhancing their lives and increasing their empathy.

See:  http://www.washingtonpost.com/posteverything/wp/2015/06/16/down-syndrome-screening-isnt-about-public-health-its-about-eliminating-a-group-of-people/
Also see on this blog:  Tell me why  5/27/15


  1. A mother of a young daughter with Down syndrome said she was “infuriated” when she unwittingly discovered last week that her daughter’s image was being used by a Swiss genetics testing company advertising an “early” and “accurate” prenatal testing kit. About 90 percent of parents who discover their pre-born baby has the non life-threatening genetic abnormality of Down syndrome choose abortion.

    “To know that this happened infuriated me, but when I saw with my own eyes… her sweet face on that ugly banner, it broke my heart. While my girl courageously fights for her life, this company questions whether she has a life worth living. How dare they,” the mother Christie Hoos wrote on her blog So Here’s Us on Friday.

    Christie said she often writes on her blog about life with a Down syndrome child, but never uses her child’s name, and rarely posts photos...

    Pro-life activists have long decried the existence of an entrenched medical bias against pre-born babies with chromosomal abnormalities, which they say usually results in doctors advising parents to choose abortion as a ‘medical treatment’ for their baby instead of life...

    Christie said that it’s no secret that genetic testing of unborn babies is carried out primarily for eugenic purposes, not for altruistic reasons or “parental preparedness.”

    “I find [that] morally reprehensible. But even that is beside the point – they had no right to exploit [my daughter] to sell their product,” she wrote...

    LifeSiteNews reached out to the parents for comment, but learned that due to an intense chemotherapy treatment that their daughter was undergoing they would not be available for an interview.

    See: https://www.lifesitenews.com/news/mom-horrified-to-see-downs-syndrome-daughters-photo-on-ad-for-prenatal-test

  2. Here is my baby girl, Louise. She is 4 months old, has two legs, two arms, and one extra chromosome.

    Please, when you meet a [girl like] Louise, do not ask her mother, “how come you did not find out during the pregnancy?” ...

    Keep in your mind that mothers have a tendency to feel guilty about each and every thing, so a surprising extra chromosome… I’ll let you make up your mind.

    Don’t tell her mother, “it’s your baby no matter what.”

    No. It’s my baby, period. Plus, “nomatterwhat” is quite an ugly name, I’d rather call her Louise.

    Don’t tell her mother: “As she’s a Down baby, she will… etc.”

    No. She is a 4-months-old baby who happens to have Down Syndrome. It’s not what she IS, it’s what she HAS.

    You wouldn’t say, “she’s a cancer baby.”

    Don’t say, “they’re like this, they’re like that.” “They” all have their features, their character, their own tastes, their life.

    “They” are as different between them as you are from you neighbour.

    I know that if one does not experience it, one does not think about it but words do matter. They can comfort and they can hurt. So just give it a thought, especially if you’re a doctor or nurse of any kind...

    The reaction to Caroline’s beautiful post has been overwhelmingly positive, with many other mothers coming forward to share their own experiences.

    One wrote powerfully: “I have 30-year-old son with Down syndrome. I understand you so much. I spread this kind of message for 30 years and unfortunately, I think they will do it for centuries and centuries, but it is important not to stop writing these messages.

    “One day, maybe, people will understand better what we live. My son Jean Robert Boucher is wonderful, sociable, tender, full of life and full of talent. We wouldn’t swap him for anything in the world.


  3. The Chazon Ish and the Steipler Gaon stood up in honor of special children as they entered a room. While others saw children with special needs labeled by society as disabled or even handicapped, these Torah giants saw only special souls capable of extraordinary things whose lives brought out the best of those around them.

    See: http://www.aish.com/jw/s/Joes-Impossible-Bar-Mitzvah.html