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Many moons ago, Mikey and I were sitting at the round wood small conference table in the office of our perinatologist. In his almost comically strong Jersey accent, he was advising us to terminate the child that I was carrying that we had discovered via amniocentesis would be sporting an extra chromosome.

“She’ll be a burden for life,” he said, “and when you are gone, she’ll burden your other child.” He went on to say that, “sometimes these people can do things like work, but that doesn’t happen often…they are just burdens.”

We asked him for more information on this “burden for life” thing, asked him for resources. Parents: we wanted to talk with parents of kids with Down syndrome. And meet someone: neither Mikey nor I had ever known someone with Down syndrome – so we wanted to change that, and preferably by meeting a child.

“No”, “no” and “no,” the doctor said. He didn’t have more information supporting the “burden for life” statement. He didn’t have more resources. He didn’t know how we could connect with parents of a child with Down syndrome (“we don’t do that”) and certainly didn’t know how to go about actually meeting an individual with Down syndrome.

Mikey and I walked out, a-daze. Heads swimming with unsupported information and a-wash in fear.

Bit by bit things came into place and we found what we needed and we made the choice to keep Moxie.

And then I found myself in my trusted OBGYN office for a check-up and I was talking about the perinatologist, recounting. all that had been said. I asked her for advice – what to do to make sure he would not say the same type of thing to someone else.

“But he was only giving you the facts,” she said. I looked at her, my eyes narrowed, “those weren’t facts,” I said, “those were his opinions.”

She went on to say that they were really facts, that just because I didn’t agree with them didn’t negate that they were “impartial facts.”

I firmly believe – as I did and said at the time – that “impartial facts” would come from an objective standpoint. That information for keeping life as well as for terminating would be available. Resources for further query. Parent group contact information – heck, even the local Down syndrome Connection contact information! Something – let there be something representing both sides. An unsupported opinion boldly stated as a fact does not make a balanced pro/con picture, methinks…

I want you to know something: I am fiercely pro-choice. I will march in the street to keep that choice. I will fight for that choice. I am unequivocally for the right of each and every woman to choose for her body what is right for her.

In no way am I saying that because I chose to have Moxie everyone should choose to have a child with Down syndrome: I am saying that I think choices must be informed. Not based on the opinions of ignorant people – or on prejudice or fear or suppositions.

They need to be based on a complete picture.

Think of it: in the supermarket: you hold up two packages of macaroni and cheese. You read the label. Is it organic? Does it have high fructose corn syrup in it? Food colouring? Yes, no, maybe so. You read the label, make the decision. How much more does a life require? How much more carefully should we be reading the labels when a life hangs in the balance?

All the labels: the labels given by actual parents of children with Down syndrome – joyful, “oh-my-God-I’m-so-glad-I-have-my-kid” labels, labels by people with Down syndrome for themselves – “I-like-my-life” labels, labels involving presence and lack of health hardship. Sure, labels of pain. Labels of joy. Labels involving battles against prejudice, difference, discrimination. Labels that may or may not report in the end that your life is so much better because you chose this child.

An informed choice. Reading the whole label.

That’s what I want.

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  1. Anna Theurer says:

    I have a strong dislike towards your perinatalogist and OB right now. Seriously, how could they be so uninformed. I am a nurse. A nurse. I never ever learned that children with Ds would be a burden. You would think the OB/perinatal would know better. Ooh this just makes me mad as people listen to them and go to them for advice.

  2. Love this! You are so right – it's about making an informed choice. It's also about BELIEVING parents of kids with Down syndrome when we say that yes, there are challenges, but no, our children are not burdens. It kills me when people think I'm lying or ignoring reality because I don't consider Rowenna a burden. I think there's an assumption that it's our "agenda" talking and not our personal truth.

    I am also pro-choice (of the march-in-the-streets variety) and sometimes I feel isolated for holding that political belief. Thanks for your honesty!

  3. Team Lando says:

    I think I had a unique experience. We told our genetic counselor we wouldn't terminate. We had CVS. She called with a positive result, and put us in touch with our local DS group.

    When the article on stats about being happy with life with DS came out, I sent it to her with photos of Ellie, and thanked her for providing REAL information.

  4. Did you ever go back and tell your doctors both how wrong they are? Now that you have the *real* information? Unbelievable that people, especially in the medical profession, and even MORE especially in the pre-natal care professions, can still be so ignorant. Sounds like they need some literature…

  5. George Estreich says:

    Even when facts are cited, the question remains: Which facts? Do the facts tell an implicit story? If one hears, for instance, that 40% of children with DS have heart defects, that implies one story. If that fact is accompanied by another–that those heart defects, in nearly every case, are operable–then that complicates the picture. If one is further told that life expectancy has risen dramatically, from about 25 in 1983 to around 60 now, then the picture is yet more complex.

    None of these facts, of course, pertain to individuals: they only describe populations. The value of telling stories is in conveying a sense of the individual child–not as representatives of a "good" view, but as citizens with quirks and hopes and all the rest.

    As for the "burden" point–by definition, as you note, it's not a fact. It's a judgment. It's also one that doesn't square with recent research on families including a child with Down syndrome. More difficulty, often; tragedy, nope.

    Thanks for sharing your story.

  6. I feel like with diagnosis, the responsibility to fully explain the choice by the Ob is treated as follows:

    Pffff! facts? we don't need no stinkin' facts….
    I know what *I'd* do. And I'm a doctor, I know!

    (that is all.)

  7. I just want to say that this one in particular was beautifully written.

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