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Saturday, April 16, 2011

Prenatal diagnosis

One of my favorite Mommy bloggers, Cassie, wrote a great post on prenatal diagnosis. She went through a prenatal diagnosis with her daughter Audriana and came across an article in the NY times on prenatal diagnosis which I just had to steal!

As most of you know, Ryan and I went through our own prenatal diagnosis with Ben and I stand by my decision 100 percent. I really don’t understand the whole “wait and see” type of thinking when faced with the risks of your child having CF but I understand that it’s not for everyone and people make decisions that they feel are best for them. But that wasn’t us. I am an advocate for prenatal testing and will again with possible future pregnancies.

Just because you go through a prenatal diagnosis does not mean that abortion is an option. It certainly wasn’t for Ryan and I. We both knew, no matter the outcome, that we were going to keep our baby. It wasn’t even something we discussed, we both just knew.

I’ve said it before and I’ll say it again, our Genetic Counselor was phenomenal. In fact, we still keep in touch with her and are excited to see her join Ben’s Brigade for the second year in a row. However, since she did not have a child with CF nor one with special needs we were presented with facts. She was not able to say things like, children with special needs seem overwhelming at first but are a HUGE blessing in disguise. Let me tell you, the facts about CF are pretty grim especially when you deal with hormonal/pregnancy changes at the same time.

But Ben’s prenatal diagnosis gave Ryan and I time to grieve, time to do our research on CF and most importantly, time to prepare. We meet with our CF team when I was 7 months pregnant and were blown away by them. We decided to collect and store Ben’s cord blood in case there were medical advances and it would come in handy. I had a c-section because he was already showing signs of Meconium Ileus (an intestinal blockage) and labor could have made it worse. I was semi-emotionally prepared for a NICU stay (I don’t think you can ever be fully prepared for that though). But most importantly, it helped us be ready for what was to come.

This article debates the fact that parents may not get a broad range of information concerning prenatal diagnosis. It’s interesting to read. You can find the article HERE.

3 comments:

  1. I don't have any children but agree with the prenatal testing. My liver transplant came with only a 3 day notice and I wish I had more time to mentally prepare and to be able to understand the new life I would be living. Knowing what to expect doesn't make it easier but allows you to ask questions and be aware of what's to come. You are truly an inspiration!

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  2. This is very interesting, With my first pregnancy mecconium Illius presented itself so that's how we became aware of CF. It was not part of the prenatal bloodwork in FL until 2007. I was about 10 weeks shy of delivering so I too had time to prepare. I became pregnant again in 2010 (unsuccessfully) and just knew that I would undergo amnio-centesis to test for CF. After losing that child and trying for over a year to become pregnant again..my feelings have shifted, or should I say my Faith has shifted. I have decided I will not undergo any prenatal diagnosis with future pregnancies. Ofcourse my Dr's will be aware of CF and will watch for blockages and other issues that could arrise. But I feel that like you it won't change anything for me as far as keeping the child. And with one CF child I already know what I'm up against. With my first pregnancy I was robbed of so many things. holding my child at all the day she was born or days to come, bringing her home, breastfeeding and other small things mothers take for granted. Even if my child were to show it had CF a week after it was born through newborn testing-it would be the same to me as finding out in utero. The only difference would be that I would be cherishing every moment of that pregnancy and birth as if it were perfect the way God meant it without a CF DX looming over us. We will have our whole lives to deal with CF if that's god's will for the child. But we will have the birthday to rejoice and be glad!

    Dont get me wrong though, i don't think it's a bad decision to do prenatal testing, it's each persons choice and it's a good choice either way. Just for me my choice has changed...b/c i was insistent on it before. Thanks for posting this, it will be interesting to see everyone else's opinions.

    Hope all is well for you and yours!

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  3. I think it is awesome that women have the ability to have as much pregenetic testing as they want and then from those results can choose to do with them what THEY feel is right for their circumstances/life. I only wish that my insurance had covered CF better but it would have been hard to tell once we got the diagnosis what life we would have chosen then. Things work out for a reason and I am so grateful to have Madeline CF or not. I totally agree, Margaux that everyone has a choice one they get their child's pregenetic diagnosis ...and abortion does not have to be it. Being in the KNOW is something I think we all have the right to if we choose to want to know....
    Thanks for sharing.

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