Carrier for CF

Update on the cold – I’m rethinking the SinuCleanse. My nose is almost completely cleared up… that was fast. I decided it must be because I was pouring saltwater in my brain.

All right, let’s talk about Cystic Fibrosis!

At my first appointment, the doctor threw out that I should get the screening for CF. I thought that was fine – I was already having a ton of blood drawn. She called me yesterday with the results. I am tested positive as a carrier.

This alone isn’t a huge deal. 1 in 25 white women are carriers. I’m surprised, though – no one in my family has the disease. I guess we’ve all been lucky! Now, M does have a family history – his grandmother’s sister’s daughter (we’ll call her a great-cousin) has CF and she is always in and out of the hospital. She’s been on the list for a lung transplant forever (I think she is not on the list anymore because of her age). So, it’s remote, but we have a reason to be afraid he’ll be a carrier also. If you remember high school biology – His grandmother is very likely to be a carrier, so M’s mom is 50% likely to be a carrier. If she is a carrier, then M is 50% likely to be a carrier. If we are both carriers, we have a 1 in 4 chance of having a baby with CF. That’s a lot of ifs.

I talked to a doctor at a nearby lab yesterday afternoon. His company is working to develop CF tests that will not require an Amniocentesis or a CVS. He asked me to be part of his study and I agreed. It is just a series of blood draws during my pregnancy and a test on the baby when s/he is born. I’m going to be part of that – I’m good at getting my blood drawn and it should help out moms in the future. He seemed almost giddy when he was talking to me. I guess he doesn’t get a lot of calls so early in the pregnancy and from someone so close. His office is about 2 miles from my house, so going there for the study isn’t a problem for me.

M will have his cheek swabbed at my next doctor’s appointment (the 14th). Immediately after the appointment, we are meeting with the CF doctor and I will have my first blood draw. We’ll know about M’s status about a week later.

I’m a little freaked out about the meeting, but mainly because I don’t like planning pregnancy dependant events after an appointment. That would be a very uncomfortable phone call at a very bad time.

I talked to M for a while last night. He is upset. He feels guilty for possibly giving this life-shortening disease to someone so small. I understand his feelings, but I don’t have them at all for this (yet). I think it’s because I’ve already sorted through feeling guilty about what my body can do to a baby. I’ve already hated myself for something much worse than CF and I’ve dealt with it. This isn’t something we’ve intentionally done to our kid and IF we have a CF baby, we’ll do everything humanly possible to give them a great chance to live a long life.

So we’ll add this to my list of hopes: Dear little baby in there, I hope you’re still happy and growing and feeling all this love I’ve got for you. I hope to see you on a sunny day in May and you come out with great, strong lungs then go on to live a happy, healthy life surrounded with love and laughter.