Some of you that have been reading a while may remember that I have known I was a FX Carrier since I was in high school. My dad was tested and found to be a carrier which makes me and my two sisters carriers as well. I was not actually tested though until I was pregnant with Ayden. I can't say why I chose not to get the test done - maybe it had something to do with getting blood drawn or maybe I was scared at how bad I would be. Regardless, it wouldn't have changed anything for us. We wanted four children (at the time), and from the information I was given seven years earlier my risk was fairly low.
Just typing that kind of makes me feel like I was naive. FXS research is changing all the time even now, so you can imagine how much it was changing then! We opted to not have prenatal testing done, knowing it wouldn't make a difference and we wouldn't terminate no matter what. The plan was to find a pediatrician who knew a bit about Fragile X an get him tested when he was born. Turns out our pediatrician didn't know as much as I would have liked, but I'm not sure we could have found one that knew much more or is as wonderful either. When Ayden was in the hospital, she did an exam and assured us he had none of the physical features and she didn't feel he needed to be tested unless need arose later on. Of course, we know this observation is totally incorrect now, but at the time it made sense and being new parents we breathed a sigh of relief and relished in our perfect little boy.
We decided to start trying for number two around Ayden's first birthday and were blessed very quickly after that with our second little boy. No genetic testing this time either, and no worries about FXS in the hospital either. It was different with Issac because his first week was riddle with other complications. He had some fluid in his lungs and spent a better part of his stay at the hospital in the nursery on an IV and oxygen, then onto the billi lights and daily blood checks for the first few days he was home. It was quite a ride with him and I don't think we even asked about Fragile X. At this point, Ayden had been in EarlyOn for a few months.
I've said before we were sure Ayden had FXS before he was tested. We had consciously opted to not test him for a good year because of his tactile defensiveness. Neither of us wanted to see our little guy strapped down and screaming to get a test that we were pretty certain what the outcome would be.
November of 2010, we decided to have another baby. We wanted three, and didn't want many years between children. We knew the risks as we did with both kids (maybe moreso this time). About a week after we decided to start trying, I got a positive pregnancy test. Birth control didn't work so well, but the timing was right for us and we were ecstatic. A few weeks later I had a misdiagnosed miscarriage (the misdiagnosed part was unknown at the time). Devastating is a mild understatement to what I felt at the time. The doctors were monitoring me weekly to make sure my hormones returned to normal, but it late January my left tube ruptured at what would have been 13.5 weeks pregnant. As if the miscarriage wasn't enough, finding out it was actually an ectopic pregnancy was worse - especially when I was quite literally dying of internal bleeding. Through all of this though, we decided we certainly wanted that third child even more. We were told to wait 12 weeks for me to recover and then started trying again.
Which brings me to being at the doctor's office on Ayden's birthday.... After a few months of trying, I got a positive pregnancy test in early June. After one ectopic, I'm considered high risk so I had blood work and ultrasounds to determine where this new pregnancy was at. My second ultrasound was on Ayden's 4th birthday showing this baby was indeed in the correct place and had a nice strong heartbeat fluttering away. We decided to tell family and friends at that point, so most people already know, but today I have officially made it through my first trimester! We are expecting our third (and final) little one in February 2012, and couldn't be more excited.
There are many trains of thought with FXS carriers as to child bearing, and we have taken one path. I will be following up this post later with more on our decision and in the coming months plan to go over other options that carriers have as well.
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