I've been asked before why I choose to have an amniocentesis. A few recent experiences have prompted me to post my answer here. (Maybe getting it down in words will help me feel less defensive, too.)
"We just heard the heartbeat for the first time today." This is my co-worker. He was surprised to have an ultrasound at the first appointment, and he did not like the tech. I was trying to be reassuring, not controversial. "Don't worry. They check for tons of different things at the 20 week ultrasound. So, it'll probably be a doctor, not a tech, doing the ultrasound." He was mortified when I told him that some of the things they will look for are markers for Down syndrome. He wasn't mortified by the hard reality that problems might crop up, but by the fact that doctors would look for these things at all. He and his wife would never consider terminating a pregnancy, so what was the point? A tech should be able to determine the gender, right?
Obviously, there's a lot more to an ultrasound that discovering your baby's gender or deciding if you want an abortion. This guy is a novice, and I won't waste time on a post in defense of ultrasounds. But he was also coming down against prenatal diagnostics.
When someone finds out I've decided to have an amniocentesis, he or she often starts to judge right away. There are risks involved with this test: about a 1 in 200 chance of complications. Don't I value the safety of my baby? Was I considering abortion? And if I'm not considering abortion, then there is no reason to have the test, right? What kind of insanity must rule my mind? *sigh* My answers seems simple to me, but I always feels long-winded giving them.
I recognize there are risks with an amnio, but they are nominal. Most of the possible 'complications' are no threat to the baby at all. The amnios I've received were also with experienced doctors in excellent facilities where the risks of complications were significantly reduced.
I could never seriously consider abortion (though 90% of babies with a prenatal diagnosis of Down syndrome are killed). It offends my personal beliefs, and would probably get me excommunicated, to boot.
Beyond that, I've got this crazy notion of knowledge for the sake of knowledge. (Big surprise I ended up married to an historian, right?) Most of my family has a genetic translocation. Distinctly related to our translocation, we have an increased incidence of miscarriage (though it's impossible to quantify heartache) and a history of Down syndrome (5 now between cousins, nieces and Lizard Loaf). If I didn't have this translocation, I would probably never choose to have an amniocentesis. But I do have it, and I want to know.
I want to know if my child has the translocation. Problems may come anyway, but will she be at a higher risk for miscarriage and a child with Down syndrome? Will she want that knowledge when she's older? Genetic testing isn't cheap, and it isn't always covered by insurance (mine wasn't). An amniocentesis is even more expensive, but it is covered. Also, having this information in my medical record instead of hers might be an advantage some day.
I want to know for myself. I knew I had a higher-than-average risk of receiving the very result I got 19 days ago. I've talked to SumGreater about this possibility. I decided that if it happened, I wanted to isolate my grief. I didn't want to feel disappointed with the child in my arms. I don't think I could bear the guilt. I'm not completely past the grief yet, but I know it won't be with me in the delivery room. I'm glad I know.
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7 comments:
I commend you for thinking about your situation and making the decision that is best for you and your family. That takes a lot of courage.
Thanks for taking the time to write this down. Tabbitha had told me the day you found out the results of the amnio because she was in such a state of shock herself. And when I saw you Sunday, I didn't know....anything. I didn't know if you knew I knew, if you wanted me to know, what to say....etc. We barely know each other, but I felt like I knew you on a much more personal level already.
If I were in your situation, I would choose knowledge as well. (I'm also married to a history major.) And the isolation of grief. That's very well articulated.
Please forgive me if I'm and bit.....standoffish about this. (I don't think that the word I want, but maybe you know what I mean.) I have never known anyone who's pregnant with a child with Down's. I still feel very awkward, I suppose, but I really want to try. You seem to be such a genuine, nurturing, honest soul, and I would love to be your friend. My heart goes out to you, and I pray that you will continue to find peace throughout this journey.
And it seems to be a blessing that you have sisters who've gone through this. I hope that didn't come across as blase. I'm sure there are times that it's hard to find the blessing. But having someone who can truly empathize is such a gift from our Father.
Sorry for the novel. I hope it all came out right. Please feel free to tell me if I've said the wrong thing. I'd rather know.
Hey Girl. Lisa here. Thanks for your complete honesty. I know for me, an amnio was VITAL to my personal sanity. I had to know what was going on with my precious baby and yes, is abortion an option or not? Even if I would never do it, I wanted options. Choices. I wanted to know that I could help create my own plan, that not everything was chosen for me. I don't care what other people think. My life is my life and they don't have to live it. Nor do they get to. I went through it all, the shock, the grief, the birth, the postpartum depression. But then over a short period of time, S won my heart over. Big time. I love him more than anything. All my children are loved equally. Disabilities for me don't change my level of love. In my husband's case, it simply increased it. S is the joy of our lives. Everyone's experience is different. There is no right or wrong. Just different. You will have a beautiful son with many talents. Just wait. Like U.T. said, Your dd will go bananas for him!
Alyssa, You're terrific. What we ended up saying in our announcement letter was "please don't feel awkward about asking questions, or feel obligated to say anything at all." For me, being open is a much of a coping mechanism as a teaching tool. And, as I learn what the taboos are, I'm posting them here! :D
Lisa--Thank you so much for your comment. Even among all the stories about women with Down syndrome, it seems everyone refuses the amnio because it wouldn't change their course of action. It is such a relief to hear you wanted to know, too.
I am a mother of three kids, two boys and my youngest, a daughter who has Down syndrome. She will be a year old next month. It is hard to beleive that a whole year has gone by already. We found out about her diagnosis during pregnancy and I am VERY thankful that we did. It gave us a chance to go through all of the standard emotions and wrap our minds around this new and unexpected journey that we were about to embark upon. Sydney is a delight and she is rightly spoiled by her big brothers as well as family and friends. We, like you, were all about knowledge! We researched on the web and then reached out to some families in the area with kids with DS. I rememeber that more than anything, I wanted to talk to some mothers of little kids who had recently been where I was (pregnant). I was able to ask many of the not so nice questions and get some straight forward answers. Please check out our family site to see our Syndey a.k.a. "Bean". From one mom to another. Make your journey your own.
I agree with Jeanette, "Make your own way." Some people like to learn their baby's gender in advance of birth, others after. I think it is a surprise whenever you find out. And no matter how much you know about your baby in advance it is always a surprise when they are born, "Oh! You are the person that has been growing inside of me." It seems that whether people learn in advance or find out later about Downs, they generally come to a place of acceptance and love that works for them and it feels "all for the best," which is wonderful. It's worked well for us emotionally with Mermaid, but now I wonder if we could have started PT/OT sooner if we'd been tested...but then we probably wouldn't have had our sublime home birth. It's all a trade off and we'll just move forward from here.
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