Sunday, August 21, 2011

Navigating a Minefield

So, I had my first prenatal appointment this week and it was lovely. I adore my midwives and trust the process of the home birth practice so implicitly it felt like coming home. I grew up in an office very similar to the office of my midwives. Small, comfortably furnished, cozy, personal, practical.... It is so much like my mom's office I half expected her to walk through the door at any moment.

We sat and chatted about my medical history and about G's family history. We talked about how the pregnancy has been going thus far and ways to work through the nausea and constipation. I was reassured that I was doing everything right and that it will almost certainly get easier as I cruise into my second trimester. We talked about what sort of testing G and I are comfortable with and what we felt we MUST have or would really like to avoid. I decided to get screened to see if I am a Cystic Fibrosis gene carrier. My family has zero history of it and I just assumed that I would not be a carrier. La la la we drew some blood, peed in a cup and went out to lunch.

Two days later I am sitting at the airport waiting for a woman who is having some post-partum bleeding 5 days out from normal healthy vaginal delivery yet trying to fly home to Saudi Arabia to decide weather or not she will let us take her to the hospital. She and her husband are speaking to a ticket agent in the ladies room as she nurses the teeny tiny 5 day old. I (as per usual) have to pee so badly I am about need a snorkel so I walk to the other end of the terminal to use the other bathroom as the closer one is the location of the ticket agent meeting. I see that I have some missed calls and a voicemail. It is my midwife. Thank god she didn't do the "we need to talk about some labs so call me" thing. She straight up told me that my screen came back positive for the CF carrier gene.

All I am going to say about CF is that it is bad. True it can come in many shades of awful but the fact of the matter is it is almost always really a super shitty thing to go through. There is a TON of great information on line if you are curious but it is a big possibility that if your munchkin is born with CF they will need a lung transplant or will possibly not live to see their 5th birthday and if they do you will see many days in and out of specialists offices, NICUs, and emergency rooms. CF is fucking horrible. You slowly or quickly lose elasticity of your lungs and have trouble breathing and coughing. A chest cold could kill a person with CF. I saw a few families over and over and over again at the ED where I worked, who were just hollowed out by this thing. It sucks. That said, it takes 2 sets of the gene, one from each parent, to make it even possible for the baby to have it. It is also recessive so even if both parents have the gene the baby has a 25% of having CF, a 50% chance of being a carrier and a 25% of not even being a carrier so the odds are good but the stakes are HIGH! So, wisely my midwife says "Here's the deal, you should have the first trimester scree which includes an ultrasound and if your insurance will pay for it you should definitely have G tested. You should consider having him tested even if you have to pay out of pocket. When you go for that first tri appointment they will see the results of your CF screen and they will offer you a meeting with a genetic counselor. Take it. You will be much better informed and you will be able to make a better plan after that." So, I did. And on Wednesday we are going in for an ultrasound (about 7 weeks earlier than I had planned on having one) and more labs and an hour meeting with a genetic counselor.

I was pretty bummed at first. I was just sad to have to deal with this. Sad to have to make these kinds of appointments and possibly have to make these kinds of decisions. It doesn't even feel like I am pregnant yet, just chubby and hot and having to pee CONSTANTLY with odd aversions to food. I was just starting to feel like I was making my way out of the woods and into the second trimester. This has sort of put an odd hold on all of my emotions. I just want to wait and see what happens when we get G's results back....then see what the GC says....then see if we need to do an amnio....then see if we need to make any really shitty choices....and not just about CF....It is so surreal and I know in my gut that everything is going to be alright but my busy little brain has trouble keeping an even keel sometimes and I have to shut down being excited so I don't worry myself out of it. I will keep you posted.

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