Cystic fibrosis- Wwyd?

Question

Hi everyone! My fiancé and I found out we are both carriers for CF. I am 15 weeks today with our sweet baby girl. Because we are both carriers she has a 25% chance of being born with CF. 50% of being a carrier as well and 25% chance of not receiving the gene from either of us.  We were told today that I have about a 2 week window to decide if I want to have an amniocentesis. If we do this, we have our answers, good or bad. But we also run the small risk of miscarriage. I’m curious what other woman would do when faced with this decision... my fiancé and I aren’t seeing eye to eye at the moment and I’m really struggling with what to do. 
Any advice or insight is appreciated. Thank you 💕

Answer

I would choose to do the amnio. CF is awful and I’d want to know ASAP. Fingers crossed for you and your little one 🤞

Answer

Yes do it. It’s not about termination, it’s about preparation. The stress the unknown will have on your body and baby could be really serious. Preparation and education can only benefit you and your baby.

Answer

I would say do it. I'm a carrier of cystic fibrosis. I have six siblings total two of them had cystic fibrosis and one of them died from complications at birth... The other is 26 and living an amazing life because my parents had such a great head start knowing that he had cf and how to handle it. I told my doctors that if my husband was not a carrier of CF as well then we would not do an amnio, but we would absolutely do one if he was. He is not a carrier. even if it's not going to change anything in your pregnancy, the best thing you can do as a parent is to prepare. You will be able to find resources and be able to find the best pediatric doctor. I just think it will give your pregnancy some feeling of relief either way so you know what you're dealing with. That's just my opinion but I strongly believe the amnio is going to be worth it.

Answer

I would go through with it given that it’s CF.

Answer

I would probably choose to do it.

Answer

Thank you ladies 💕 I would never terminate the pregnancy no matter the result of the amnio which is what I’m struggling most with. My fiancé wants the answers now, where as I’m not so sure I’m willing to risk it. I’m terrified of what happens if the testing comes back that she’s perfectly healthy and then I lose her to a miscarriage anyway.. 
Whether we do the amnio or not I’m still going to educate myself fully on CF and have a plan in place because we will be faced with this decision/possibility with all of our pregnancies in the future. 
We’ve decided to sleep on it for today and try to come back to it when we’re not so emotional and raw.
I appreciate all of your inputs so much!

Answer

Decide what you would do with the information, then decide if you ‘need’ it.  If you aren’t going to terminate or change hospitals for a higher level NICU etc, then what is the difference?  I personally would not risk amnio just for those statistics.  Even if she has it, it won’t make her immediately life threateningly ill.  CF is a very different disease than it used to be and many people manage it... not easy news to hear, but hang in there!

Answer

I found out I was a carrier, and because  my baby was already about 12 weeks, knowing wouldn’t have changed anything for me. (I already have researched it a lot). I decided not to test my husband or to get the amniocentesis. Eventually the clinic pestered me enough so we tested my husband around 20 weeks (I decided I wanted to know for future babies) and it turns out he isn’t a carrier, but I still wouldn’t have done amniocentesis. If my child had it, then what’s done is already done, and I’d find out when she was born. I didn’t want to add any risk to her life. CF is getting more and more treatable, so I would just prepare yourself for the worst but hope for the best! ❤️

Answer

I would want to know. I would do it. The risk for miscarriage or leaking fluid is pretty small, but they do have to tell you about them because they can happen. I would want to be able to prepare if my baby did have CF.

Cystic fibrosis- Wwyd?

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