31 for 21: Human Endeavors and Dilemmas

We live in an interesting, paradoxical time with regard to Down syndrome: on the one hand, new prenatal screenings seem to want to make it easier than ever to do away with Down syndrome once and for all.  On the other hand, scientists are working to develop drugs to improve  cognitive function and stability in the Down syndrome population, thereby hopefully improving quality of life for people with Down syndrome.

Historically speaking, I’d say that there is more focus on and awareness of Down syndrome than ever before.  It used to be that there was no way to find out until after birth that a baby had Down syndrome.  Babies who were born with Down syndrome often died shortly after birth because little was understood about the medical issues they were often born with, and nobody wanted to do anything about the problems of these throwaway subhumans anyway.  Up until pretty recently, babies born with Down syndrome were routinely placed in institutions where they would live miserable, inhumane, usually brief lives.  And nobody really talked about it.

Technology and awareness have advanced, and with them, choices. And all the choices are emotional powder kegs.

The new prenatal screening, called MaterniT21, has been talked about for quite some time in the Down syndrome blogging community.  This new screening is a simple blood test – no more invasive than the insertion of a needle into a vein – and can be performed as early as 10 weeks gestation.  For the most part, parents of and people personally touched by Down syndrome are very much up in arms about it; the implication is that it will make it that much easier for women to abort their fetuses prenatally diagnosed with Down syndrome, and sooner.  It is conceivable (though unlikely, I think, given that there will always be women who will decline testing, and women who will choose to continue their pregnancies even with a Ds diagnosis), that eventually, Down syndrome could be completely eradicated.

I’ve turned this over and over in my mind.  What is it about the possibility of eradicating Down syndrome that is such an emotionally charged issue for us parents of children with Down syndrome?  Is it that we don’t want to be alone on this path?  Is it that we don’t want our children to be alone, that we want them to have some semblance of a “tribe”?  Is it that we really believe that people with Down syndrome are so “special” that the world needs more of them?  Certainly there is a very real concern that the fewer people there are with Down syndrome, the less resources and research will be made available for existing people with Down syndrome.

Why do we care, though, what some other woman does with her pregnancy?  Why do we feel that we should get a say in the choices she makes for herself and her family?  Why do we feel like it’s a personal affront when we hear about the 90% termination rate of pregnancies prenatally diagnosed with Down syndrome?  Why do so many of us feel like what some other woman is doing or choosing affects us directly?

Personally, I struggle with it.  I’ve always – always – been pro-choice.  I believe in a woman’s right to choose – in her right to have sole power over her own body and her own reproductive destiny – on a visceral level.  Do I think that people make bad choices?  Yes, I do.  But I don’t think the answer is to guilt or browbeat women into choosing not to terminate their pregnancies, and I don’t even think the answer is to implore or beseech women to keep their babies – Down syndrome or not.  The cold, hard truth is that the world is often a cruel one, alarmingly overpopulated and rife with poverty and violence and intolerance; it is not generally a place welcoming of little babies with Down syndrome.  There are also plenty of people who become parents who probably have no business becoming parents.  So if someone finds out she’s pregnant with a baby she doesn’t want, how is it doing anybody any favors to force her (or guilt her) into bringing that baby into the world?

As liberal-minded and pro-choice as I am, however, I do take the whole abortion issue with regard to Down syndrome personally. I think it boils down to the statement it makes about my child and his place in society.  If 90+% of women who receive a prenatal diagnosis of Down syndrome choose to terminate that pregnancy, what does that say about her (and therefore society’s) views about Down syndrome?  It says that Down syndrome is a scourge.  Down syndrome – and therefore my son – is undesirable, unwanted by society.  That is a bitter pill to swallow, and sometimes it makes all this advocating and all this awareness-raising feel hopeless.

The point I’ve gotten to, I think, is that I just can’t invest too much energy and emotion into worrying about what other women are doing.  I have to trust that people make the best decisions they can (certainly not always the decision I would make or you would make) under their unique circumstances, hopefully with the best and most accurate information available to them.  I have to invest my energy and emotion into making the lives of my son and all of my children, who have been born and are here as citizens of the world, as happy, healthy and positive as I can.

On the topic of maximizing quality of life for people with Down syndrome: as I mentioned in the beginning of this post, scientists are working, as we speak, to solve the puzzle of how Down syndrome affects cognition, why people who have Down syndrome and live long enough will almost certainly develop Alzheimer’s, and how these hallmarks of Down syndrome can be treated from a clinical standpoint.  I know next to nothing about it, and I will say that I have very mixed feelings about it. I don’t have any desire to change Finn; I really and truly do love him exactly as he is.  However.  If there were a way to improve his cognition and thereby open up opportunities to him, would I want to do that?  Of course.  If there were a way to ensure he wouldn’t someday suffer from dementia, would I want that?  Yes.  But I’m also not willing to make him a guinea pig, and I’m extremely wary of drugs anyway – even vaccines!  No drug is without risks and side effects.

A segment was broadcast on NPR today on this subject: Down Syndrome: Treatments, Clinical Trials and Policies

Lots of food for thought.  I’ll be keeping my eye on this one, I think.

In the meantime, I’ll keep doing my small, humble part to make the world a better, kinder, more welcoming place for Finn and for all my kids.  That is why I’m taking part in the 31 for 21 Blog Challenge to raise awareness about Down syndrome this month – to show anyone who stumbles across my blog that my son, and all people with Down syndrome, is a real human being with a full range of feelings, immeasurable potential, and deeply invested in by his family.  Be tolerant.  Be kind.  For his sake, and for the sake of every one of us in the world, none of us whom are without defects, imperfections, and limitations.


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4 Comments on “31 for 21: Human Endeavors and Dilemmas”

  1. Jennifer Varanini Sanchez
    October 21, 2011 at 5:12 am #

    Perfect post…I agree wholeheartedly with the decision to focus time and attention and “energy” into our children and stop worrying about what women in the future may or may not do with their prenatal diagnosis. LOVE it…keep it up Lisa!

  2. jen
    October 21, 2011 at 9:58 pm #

    I’ve pondered the abortion issue as well. I am very much pro-choice. I believe in a woman’s right to choose. And, even if we don’t agree with the choice in some cases, I would never want a return to back-ally abortion clinics, coat hangers and other such attempts. So, why is it SO incredibly disturbing to think of the 90% abortion rate for prenatal DS diagnoses?

    I’ve come to the conclusion that for me, the problem is SELECTIVE abortion. If a woman doesn’t want to have a baby, fine. If she wants a baby, is prepared to have a baby, but decides not to because this one isn’t good enough? That’s where I can’t agree. It may be that it’s a girl and she wants a boy or it may be that the child will have a disability and she wants a “perfect” baby. Sex selective abortion is very popular and accepted in some parts of the world, but in North American culture consider it very wrong. So why is the selection of other genetic characteristics okay? There are no guarantees. Selecting a fetus based on gender or eye color or any other aspect aspect of its genetic makeup is about designer babies and is such a slippery slope for society, IMHO.

    Sorting this out made me more comfortable with the whole debate, as I was disturbed by what I saw as a double standard in my own abortion views. It’s not a double standard now.

    • Lisa
      October 21, 2011 at 10:50 pm #

      Jen, I’m in complete agreement with you on this one.

  3. Jaida
    October 23, 2011 at 2:41 am #

    Lisa, this is the post I wish I could have written as coherently as you have. So well written and I am in agreement with much of what you say. Really, well done.

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