My thoughts on prenatal testing

If you’ve read my Finding Out post, you know that Daniel’s diagnosis was a surprise. We opted not to do prenatal testing (for any of my pregnancies) for a couple big reasons.

First: I am young. At 29 my chances of having a baby with Down syndrome were roughly 1 in 1000. I have no risk factors. The risk of miscarriage caused by the more invasive testing were considerably higher than my risk of having a baby with Down syndrome (or any other chromosomal abnormality) was. The odds were in our favor, so why do the testing?

Second: This is probably a bigger reason than the first- we wouldn’t have terminated the pregnancy.

So the question a couple people have asked since he was born is: Do I wish I had done prenatal testing so that I could have prepared for this? And having had a chance to think about it (a lot) my answer is no. If we had gotten this diagnosis before he was born I would have wondered about false positives. I would have worried about when to tell people. I don’t know that it would have felt real.

Getting the diagnosis after he was born was certainly a lot to take in. But Brian and I both manage pretty well with changes that come our way. I think if we had gotten the diagnosis before he was born, that’s all I would have thought about. Once Daniel was here though, HE was what mattered. Yes, he has Down syndrome. He also has a lot of hair, and big feet, and blue eyes. He is soft and tiny, just like our other babies were. Daniel is a baby, not a diagnosis, and I thinking getting a prenatal diagnosis would have made that harder for me to see.

So no, I wouldn’t have done things differently. Besides, now that he’s here it’s impossible to imagine not wanting him, not having him, not loving him.

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20 thoughts on “My thoughts on prenatal testing

  1. Amen! Beautifully worded. I agree, our babies are more then the "labels"often attached to them. Did you listen to Eder Rasband's talk from conference? It was amazing!

  2. First of all, he is so precious. I know I keep saying this, but the sticky uppy hair!Second, you echoed here the reasons we opted not to do prenatal screenings. I can completely understand why other people WOULD want to be prepared, so how fortunate we all get to make that choice for ourselves.

  3. This is the most perfect post. We didn't do prenatal screening for all of the reasons you listed, and you said it much better than I was ever able to, to people who were HORRIFIED that we didn't test.

  4. I agree with everything you've said. We too opt out of the prenatal screening for the same reason – we're going to love the baby either way. And who could resist those cheeks?!

  5. So glad to hear your thoughts on this. We have never done prenatal testing for the same reasons, knowing your thoughts after the birth makes me feel better about the choice if we have another.

  6. I just signed the consent for no prenatal testing today and, of course, thought of Daniel and you guys. Then I came home and read this post and tears seeped from my (nearly always teary) eyes.. perfect timing. Perfectly said.

  7. This post and the one you linked to made me cry, but in a good way 🙂 I too am 29 and 31 weeks along with our 2nd daughter. We had the testing done with our first, but I just didn't feel a need this time around. I can't imagine how I would feel if I was given the news, but I know that nothing leading up to it would have mattered anyways.

  8. My thoughts exactly. I never find out for the exact same reasons. The fact that you had no risk factors is proof of how much God wanted YOU GUYS to have this special, beautiful boy.

  9. Wow, I'd never thought of it that way. I've always thought I'd definitely want to know. We did the screening both times. I would like to be prepared and have a chance to mourn the developmentally-normal child I thought I'd have so I could embrace the perfect, if a little different, child I DO get. But I totally see where you're coming from when you say it would just lead to focusing on the diagnosis instead of the child.Also, thank you for providing more clarification beyond the oft-said "but we'd love the child no matter what and there's no chance we'd terminate!" Well, ME TOO. Are you (not YOU, but the general you) insinuating just because I want to know I'm NOT going to love the child anyway? Rediculous.

  10. I think I would want to know ahead of time even though we wouldn't terminate the pregnancy either. But everyone feels differently and it's good to hear how confident you are in your choices.

  11. I opted to do the testing because I wanted to know and prepare, mostly for health reasons, not for mental ones, if that makes sense. I was also TERRIFIED of T18 and T13, which are very different diagnoses than T21. So if there was a way to check THOSE and not T21, I think I would have just done that. I also had no plans to terminate, I was just terrified (irrationally) of losing another baby in utero, and my insurance would have covered ultrasounds out the ying yang if I'd had a Down's diagnosis, and I would have been in there every day checking on my kid's parts, lining up specialists to make sure, etc.I know that's probably not rational, but it's how I roll in pregnancy. I am a crazy worrier. Like you, I would not have been disappointed with a child with Down's, but I think being prepared would have made me less overwhelmed than finding out the day of. Same reason (though not at all the same) I find out the sex. I GOTTA KNOW. That being said, I have two friends with DS babies, one for whom it was a total surprise. Both are thriving, both are happy and I think ultimately, it doesn't really matter how we find out, because a child is a child is a child. (Mind you, I am also significantly older than you, so my risks were more than double yours.)

  12. This was very beautifully written.I did the testing (triple screen) with Allison because we were in Mississippi and there was no NICU to handle anything out of the ordinary in the STATE. I would have had to deliver in Mobile or in New Orleans. If I had delivered in Mississippi and something happened after delivery, the baby would have to be taken to Mobile or New Orleans (this happened to a friend). So even with the chance of false positives, I just wanted the best care possible for her.I honestly don't remember with Jordan. I think I had it done. But I think it's always been presented to me as a mandatory thing. I had no idea that you could choose to not have it done.By the way, Daniel is SO cute!! I just want to squeeze those cheeks!!

  13. I think your reasoning for not doing prenatal testing is interesting. I at first declined, but when we learned Fiona had both a serious heart defect and clubbed feet, I needed to know. For no other reason then I wanted to prepare. My pregnancy was already going to be stressful knowing we had heart surgery ahead of us, and i wanted to know what if any chromosome disorder caused her deformities so I could prepare myself for thia new life. I really value that kowledge, mourning what I had lost and the time to fully embrace and prepare for special needs. I had a horrible amnio and i don't know if I would do it again, but now I am also a lot more educated on birth defects then i was then. I spent her birthday rejoicing, elated with joy that she was healthier then anticipated, rather then shocked she was different then expected and that was a huge reason why I finally decided to go ahead with genetic testing. There really is no right time to learn your child is different, but I am all for finding the best outlook possible for every situation and you are one of the first ones that seems to be able to so this with an after birth diagnosis. Your little boy is lucky to have you 🙂 just curious, how did you find my blog?

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