Cystic Fibrosis Testing & Genetic Testing to do or not do? — The Bump
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Cystic Fibrosis Testing & Genetic Testing to do or not do?

Hello ladies! I am 11 weeks along today and next week I FINALLY get to see my little peanut and make sure everything is going along well.  I will also have the opportunity to be tested for cystic fibrosis and genetic testing.  What do you ladies think about the testing, worth it in the end as far as costs go?  If I get the testing it would not change anything about me having this baby so....Just wondering others thoughts on it.

Thansk! :)

Re: Cystic Fibrosis Testing & Genetic Testing to do or not do?

  • I opted not to get the test with my son.  Our reasoning was the results would not effect anything.  We were having a baby.  My son had cancer, so this time we chose to do further testing.  Turns out I carry the CF gene, we are still waiting to get my husband's results back. 

    As far as the cost, call your insurance company if you have questions.  My insurance covered the cost.

  • I am 13 weeks pregnant and i did the testing i think its well worth it because you want nothing but the best for your baby. i say GO FOR IT!!! -Cindy
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  • I opted out of the testing and I think it's the first of many "personal" choices you are going to have to make. Would knowing something was wrong right now change your course of action? Are you a planner who would feel better knowing if something could be wrong or are you a worrier that would spend the rest of your pregnancy expecting the worse? I have a cousin that had CF but he wasn't a first cousin and my DH had no history of CF in his family so we chose not to test. There is so much out of your control with a baby. I chose to focus on the things that I could impact what I ate, being healthy for the baby and chose not to worry about things that would be beyond our control.
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  • With our insurance (Cigna) the cost for the Cystic Fibrosis test was only $20 so we did it. We didn't do any of the others because they weren't covered by insurance and was over $200. If you are under the age of 35 they really don't even recommend these tests. My doctor told me there are several cases of false positives and false negatives - therefore you could get red flags that make you worry when the baby is actually fine. Or you could get results that say the baby is fine and it comes out with a genetic issue. I think this tests are pointless - there is not much they can do in utero to help the baby even if God forbid it does have a problem. Good luck!

  • I had a friend that got all the testing done and time after time, it came back with a high probability of there being and issue and she had to do further testing.  Then after each more invasive test (like the CVS) she was in pain, miserable and STILL didn't have definitive answers because they got a "mosaic" for the result.  She finally ended up having to do an amnio and everything was fine.  Baby Matthew was born last week PERFECT and she spent the first 1/2 of her pregnancy a wreck over what might be.  PLUS is caused she and her hubby to fight because then he wanted the baby checked for like a million possible genetic issues and markers.  She finally put her foot down and said "no more".  Modern medicine is wonderful, but sometimes it just makes worry where it need not be!
     



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  • Kind of like what others have said... I asked my midwife several times, does this test change anything about my prenatal care or labor and delivery - since the answer was always no - I decided not to worry at all about any of the testing. When our baby gets her we will find out what we need to know to care for them then.  Until then, I have the peace of mind of not having to even consider what could be. 
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