I'm Glad I Didn't Have The Opportunity To Terminate My Baby With Down Syndrome

Iceland's goal of eradicating the genetic disorder is a slippery slope and a loss for humanity

This week, CBS reported that Iceland is leading the way in the successful eradication of Down syndrome. Almost 100% of women who receive a prenatal diagnosis of Down syndrome in Iceland choose to terminate, and this has been the case for more than a decade (the termination rate in the US, by comparison, is 67%). With prenatal testing becoming more accurate and less invasive, increasing numbers of woman are being given the choice—and the overwhelming majority, not only in Iceland but around the world, are taking full advantage.

My 20-year old daughter, Julia, has Down syndrome. I’ve thought a lot about this over the course of Julia’s life. It is heartbreaking for me to acknowledge that most people in the world see Julia, and the life she is living, as disposable and undesirable. CBS's report brought this stark reality once again to the top of my mind.

I am pro-choice. I can imagine circumstances where I may have chosen to end a pregnancy. If I’m completely honest with myself, I would have likely ended my pregnancy with Julia—had I known about her diagnosis prenatally. And that disgusts me. Because that decision – like the decision of thousands of women today—would have been made out of ignorance, misinformation, and fear. And that is unacceptable. 

A termination rate of 100% seems to suggest that women are being counselled and influenced to do so. This frightens me—the ‘experts’ are speaking to the vulnerabilities of expectant parents and leading them to believe that one decision is favourable over the other. This is simply wrong—and I feel a responsibility to cast some light on this gross miscarriage of justice.

To me, this is nothing short of genocide, directed at people with Down syndrome because of their genetic composition and the associated fears and stereotypes. And this report out of Iceland validates this point of view. The goal is to eliminate people with Down syndrome—the report isn’t even shy or tentative about the claim—it is even heralded with a sense of pride—as though a goal has been realized.

But here’s the thing—Down syndrome isn’t an illness; it isn’t terminal, and it does not mean a life filled with misery. Why exactly do we want to eliminate it? Does it destroy lives? No—to the contrary, people with Down syndrome boast a very high quality of life, as do the folks who love and support them. 

A study in the American Journal of Medical Genetics in 2011 concluded that the experience of Down syndrome is an extremely positive one for the vast majority of parents, siblings as well as the very people who have Down syndrome. In the study: 

  • Only 4% of parents surveyed regretted having their child. 
  • Almost 80% felt their outlook on life was more positive because of their child. 
  • 94% of respondents expressed feelings of pride towards their sibling. 
  • 88% of siblings felt they were better people because of their brother or sister with Down syndrome.
  • 99% of individuals with Down syndrome said they were happy with their lives
  • 97% liked who they are, and 96% liked how they look

Based on these numbers, Down syndrome sounds like a pretty wonderful thing! 

Ruth with her daughter, Julia

I’m not naïve, and I won’t sugar coat my experience with Julia. There have been challenges; there have been health risks; Julia has required accommodations and supports that other children do not necessarily need. But guess what—so have my other kids. No parent can take for granted that their child (in many cases because of how they are programmed genetically) is not going to bump up against significant and unexpected challenges. 

What is scary about the Iceland report is not even what it means to the population of people with Down syndrome (though I loathe the trend). It is the broader implication to our society. Who decides which genetic anomalies are worth preserving or eradicating? Who should determine the measure of ‘challenge’ that influences that decision? Is a genetic predisposition to cancer ok to eliminate if it can be prenatally diagnosed? What about depression? What about homosexuality? What about gender? It is a very slippery slope, and for the medical establishment to decide, in an absolute sense, that a certain genetic composition is undesirable is terrifying to me.

I am indeed pro choice. But it is for the medical community, or governments to unilaterally decide which choice is preferable. It should be the personal choice of the parents—to be made without undue influence and with a balanced exposure to the facts. 

When a prenatal diagnosis is determined, expectant parents should be given balanced information about what to expect. Not just a litany of outdated risk factors delivered by doctors without context. But information shared by parents, educators, employers, friends, siblings—the people who have experienced the impact of the diagnosis first hand, from day to day—not out of a textbook, but in real life. 

What would I tell an expectant parent? I’ve told many parents that Julia has, unequivocally, been a shining light in my life. I can’t think of an experience that has taught me more than parenting Julia. Raising Julia been different—but no less rewarding than raising my other children. In some ways, perhaps more rewarding. Thank goodness, I did not have an opportunity to terminate my pregnancy. I would have missed out on so many beautiful gifts. 

I feel bad for Iceland. Iceland may realize its goal of eradicating Down syndrome. But as a result, it will be forever diminished in its sense of humanity, and I fear, it will only be a matter of time before the next, less obvious genetic anomaly hits the list of Icelandic ‘undesirables’. 

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