Hemophilia (low factor VIII) runs in my family -- all of my grandmother's uncles & her father had it, my uncle had it (so my grandmother was a carrier), & my aunt was tested and had low factor levels.
Women can carry it -- if their mothers are carriers there is a 50/50 chance that they can be carriers, too. My mom wasn't tested and only had girls (my sister and I) and my sister wasn't tested either. But now that we're TTCing this spring, I am thinking I want to be tested.
It wouldn't make a difference in whether or not we have kids, but I feel like it's important to know if I'm a carrier -- mainly because the only hospital here, while a good centre, is not equipped with any kind of NICU, let alone hematologists or specialists. If I turn out to be a carrier, I'd want to know that I'm either okay to deliver here without worrying about getting medevaced out, or know that I need to go deliver at the hospital five hours away that is also a hemophilia treatment centre (or, ideally, know that I'm not a carrier and it doesn't matter).
Unfortunately, factor testing can't be done once you're pregnant, so now I'm scrambling. I have to get a referral to a hematologist, and my local clinic just screwed me over and pushed my appointment all the way to March 20. I have no idea how long it'll take to get that referral and get THAT appointment, or how many appointments I'll need to get a definitive answer.
My biggest concern, aside from all of these "what if I give my kid a disorder/what if I have to go give birth in Thunder Bay/what if I have to decide whether or not to have prenatal testing if I'm a carrier" thoughts, is that our timeline is going to get pushed waaay back. I was really, really looking forward to this spring and trying to conceive.
Our plan was to take May as a 'practice month' and just not try to prevent, and then try in earnest starting in June. The thought of having to wait indefinitely, because I have NO idea when this testing stuff will be resolved, really bums me out and almost makes me want to say forget it, especially because my mom had two kids and my sister had one without knowing their carrier status.
But I also can't stomach the thought of not knowing and potentially putting myself or my baby at risk by being uninformed.
Ever since I started trying to sort this stuff out (earlier this week) I have been so, so anxious about it. I wish I could go back in time and get my testing done earlier, and I have no idea why I put it off this long! I don't know if I'm looking for advice or commiseration or just to vent, but man, this is sucking the fun out of everything.