Cystic Fibrosis T&Ps Please

daltosostarby

My BFF, who is ~34wks pregnant, just told me that he likely has cystic fibrosis, and his intestine ruptured in utero, leaking meconium into his abdomen. My heart is breaking for her and her baby. Does anyone have any experience with cystic fibrosis?

jhjocelyn

My dd has cf, during the pregnancy we saw that her bowels were slightly echogenic, so we knew it was more likely she would have it( we had done a cheek swab test and knew there was a 25% chance of it before the ultrasounds). Your friends case sounds more sure and certainly a more scary start.
Cf isn't what it uses to be, it isn't as scary as it seems at first, it does take a lot of work and a different perspective to parenting. It is progressive, so parents work hard to keep their cfers as healthy as possible as long as possible.
The medical research and management is super thorough, honestly it is not a far stretch to think a cure will happen soon. There are famtastic teams across the country and I'm sure your friend will be linked with one asap. I'm also willing to help if I can, it is still pretty fresh for us. Support is huge, learn what you can, be super mindful of bringing germs or bacteria around the baby when he comes.
Offer lots of help! Some parents need to retreat and form a safe zone(it is really easy to end up isolated), others reach out far and wide. Talk to your friend about what she needs, and listen a lot. Sometimes I just need to process and honestly mourn the things dd will never do or that are just so complicated when a non-cfer wouldn't have to think twice.
Sorry that got long, hope it helps!

daltosostarby

Thank you @JGjocelyn‌! I appreciate the information. I know that she's going to a great hospital, I just hate that I'm so far away from her, and that I can't be there to help.

jhjocelyn

Just listening without trying to "fix" anything is huge. Also, there will probably be long hospital stays, so if you know what hospital they will be at, gift cards to area restaurants with take out are awesome.

If you want other ideas, I know there were a lot of little things I wish I had thought of wayyy sooner, for the most part cf care is very similar across the country. Although I'm sure for her lo he'll prolly need surgery right away and I'm not sure how that part of things goes.