Geez. How do I start? This is going to be a bit of a ramble, so forgive me.
About a week ago as I was returning home from a walk around my neighborhood and almost having my Golden Retriever dive himself in front of a truck pulling a trailer, I received a phone call from my doctor. Specifically one of the nurses at my OB-GYN’s office. I’d had six viles of blood taken at a blood lab the week prior and the nurse asked me if I had any knowledge that I was a Cystic Fibrosis (CF) carrier. At first I was baffled:
- Is she saying I’m a carrier?
- Is this something that every person knows the answer to? Like common knowledge of what color hair you have on your head?
- Should I know this? When I was born did they forget to run a test?!
I answered, “no.” I didn’t know or if I did know at one time, I had no idea now. What followed was what I always do when doctors call and say that I may or may not have a condition. I get “high on information.” I always find security in knowing. By the end of the day, I already knew that if I was a carrier that my husband would also need to be a carrier to have a risk that our child would be born with CF and thanks to that little chart we learn in High School Biology, that the baby would only have a 25% chance of having the disease, a 50% chance of being a carrier, and a 25% chance of having no trace of the disease. Either way, it was clear that the next logical step would be for my husband to be tested to see if there was any reason to worry at all.
When I went back for my two week check-up (that’s a whole other story entirely due to the complications I’ve been having), he said that the results were still “processing” on terms of the CF results and that he would have one of the nurses call me about the results later in the day as they should be done almost two weeks later. All of my other tests came back normal, so at least I’m secure and comfortable in that knowledge.
Finally at almost six o’clock last night, the nurse called me back and said that I tested positive as a carrier of CF and that I had one of 32 markers of the disease. She continued to say that they were going to make an appointment for me with some “specialist” to determine if the baby contracted CF or not. When I asked her if my husband needed to be tested to see if he was a carrier of CF, she said, “no” and that’s when I got all sorts of red flags. I chose to not argue it out with her on the phone as we were at my in-laws and about ready to step out for dinner (which was really yummy by the way) and I was so taken aback at the moment I would have stammered and stuttered my way through the whole conversation and made little to no sense.
The tests to determine if the baby has CF or not while in utero are invasive to say the least. Chorionic villus sampling requires taking a sample from the placenta of our baby and amniocentesis just gives me the heebee-jeebes at best; both have a risk of miscarriage at worst. Amniocentesis also carries a risk that if the person performing the procedure isn’t careful, damage can be done to the fetus’ body if it’s pricked with the needle. While wikipedia claims that these tests’ results outweigh the risk involved, it doesn’t for me. While CF used to be a death sentence, many live good quality lives well into their forties and have little amount of symptoms which anyone would notice and would strike them as “different.” I’m not in denial here, let’s make that perfectly clear. They would get sick, but many “healthy” children also do so, we’d just have to be a little more careful than most. The worry for me is that the nurse said to “determine if the baby contracted CF or not” which means the only way they can be sure is if they perform one of these tests which are both unnecessary if my husband isn’t a carrier in the first place. Which brings me to my final conlusion:
When you have really good insurance in the USA, which myself and my husband do…we slave away at a job that we find makes us absolutely miserable for our insurance…I feel as if the medical community sees huge dollar signs in front of their eyes when they see our charts. These tests are expensive and while the genetic test to determine if the parents are carriers are also expensive, I doubt that it is anything near the cost of performing these other tests. And this all goes without mentioning that this is our child and we will protect him/her with all the power we have, even if it is against medical advice.