u/notter392729

I recently learned my daughter will be born with cystic fibrosis. F508del variant. I’m still very early in the pregnancy and plan to meet with our cystic fibrosis center in my state as soon as I can get scheduled (waiting for them to receive my referral from fetal medicine)

I’m looking for real world experiences of what newborn life looked like. I understand it’s different for every one and there are so many treatment options. But I know that within recent years medication has changed drastically so some of the posts on here are a little dated.

What did your routine look like on a day to day basis. Did you go back to work, if so did you use daycare or family. Extra precautions, things that surprised you, things that worked or didn’t work. Really anything.

Thanks all!

I’m looking for experiences with Natera Fetal Focus. We recently learned that both me and my husband are carrier for the same variant f508delta. I received my Fetal Focus results back today that they are detecting two copies of the variant in the test, resulting in 92% chance that our baby has cystic fibrosis. They made clear that this test is not a diagnostic test and I have an amnio scheduled which will give definitive results. I have concerns that the test is actually picking up my variant plus the baby’s, which would make her a carrier.

The test isn’t scheduled for another 2 weeks. It’s hard not to fall down a rabbit hole, but with this test being so new it’s hard to find any real world instances where this testing has been done and what the ultimate outcome was.

I’m basically just hoping to find people who have had the test done through Natera with a follow up CVS or amnio. I’m stressing and looking for anything to put my mind at ease.

Any input is appreciated and thank you in advance.