Choice

People keep telling me that it's "interesting" to hear my perspective on choice, given my situation. I am glad to share. Before I came to be here, how could I possibly have known how I would feel?

While I was pregnant, I learned that my daughter would have Trisomy 21 (Down syndrome) and an atrial-ventricular septal (heart) defect. This was pretty heavy. Although I initially didn't want to have the prenatal screenings (because it wouldn't change anything; we wouldn't choose to terminate regardless – plus, why would anything be wrong?!) I ended up having quite a few.

I declined the quad screen maternal blood test that looks for elevated or decreased levels of this and that. My reasons made perfect sense during the day. But at night I couldn't sleep. Or I awoke in a panic. At night the rational daytime feelings didn't matter at all. So I decided to have the blood test to help myself sleep better. Shockingly (or not) my levels of this and that were slightly out of whack. Because I was 28 years old I had a 1 in 816 chance of having a child with Trisomy 21. The quad screen results increased the risk to 1 in 221. 1 in 250 is considered "borderline" for more testing, so there was still little cause for concern. I agreed to have a Level 2 diagnostic ultrasound but declined amniocentesis – too risky. The ultrasound turned up the heart defect, which is more common in kids with D.S. than in chromosomally typical kids. And a couple other points of concern too: slightly thickened nuchal fold, maybe, and a single umbilical artery. Now the doc put the chance at 1 in 2. 50/50. That weekend sucked. I'll write about it some other time; it's still too raw to explore.

I agreed to have amniocentesis. The preliminary results and the eventual full results came back the same: Trisomy 21.

When we first learned about the heart defect and the increased chance of Down syndrome, my O.B. was very supportive. She made it clear that she would not judge me, whatever I decided. She told me that the day I learned about the heart defect (before we knew for sure about the Trisomy 21) was the last day I could legally have an abortion in Missouri, but that if that's what I decided to do, to come to her. She'd help me find a resource in another state to have the procedure done safely.

I'm saying I – I – I throughout. My husband, Paul, and I were very much in this together. Going through this brought us much closer together as we learned to lean on each other in a way we'd never had to before. We learned every piece of news, attended every doctor's appointment, and made every decision together.

In the end, as we expected, we decided not to terminate. I spent the rest of my pregnancy mourning the loss of the healthy, smart first child I had dreamed of. I spent the months reading about other families in my situation. I spent it crying and coping and learning and feeling a really strange mix of emotions. How could I have felt differently? All I knew was what was wrong with my daughter, not how wonderful she was to be. I love my daughter. She is a gift and a blessing. I expect this blog to be regularly filled with obnoxiously glowing maternal love and pride.

Interesting facts: Over 90% percent of women who learn that they're carrying a fetus with Trisomy 21 choose to terminate, regardless of their political affiliation or previous opinions about abortion. The only women I know who have decided to continue their pregnancies have all been "pro-choice" women, as I was. Most babies with Down syndrome are born to women in their 20's, who often have gone through less prenatal testing.

So, looking at my beautiful daughter and loving her so much, how do I feel now? I am a stronger supporter of abortion rights and a woman's right to choose than I was before.

1) Until you've been in this position, you have no idea how you will feel, how you will cope, what will be right for you and your family.
2) If I had not had the opportunity to choose to have Ellie, I believe that I would have felt trapped by my pregnancy, trapped by this baby that I was scared of. I believe that I would have come to resent her and that would have gotten in the way of loving her and bonding with her as I have.

Almost every weekend there are protestors at the new Planned Parenthood up the street from my house. Only one time have I ever seen a woman picketing. Most of the time, the protestors are men, sometimes with children in tow. This fills me with rage. You don't know. You haven't been there. It's none of your damn business. I would never wish the suffering I went through last summer on anyone. But if one of these men is ever in the situation that my husband found himself in last summer, I think he will begin to see the world very differently. And I hope that he will be surrounded by compassionate people who know that the world is not simplistic. It is not black and white. And that believing that it is so – judging one's neighbors so quickly and so harshly - is a far greater sin then that which they protest so loudly.