https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Wed, 29 Apr 2026 20:44:47 +0000 https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557413 Fri, 08 Feb 2013 19:26:45 +0000 Mrs. Jacks 557413@https://boards.hellobee.com/ <p>@MrsDragon: you got this! </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557405 Fri, 08 Feb 2013 19:23:13 +0000 mrsmacandcheese 557405@https://boards.hellobee.com/ <p>@Mrs. Jacks: Yeah, I figured the risk of him having anything to do with it would be SUPER low. Trying to leave that extra what-if out of my brain, haha! ;)</p> <p>Ah, the joys of living in Northwestern Ontario. We do have a really great hospital (and we actually have one of the highest birth rates in the region -- people from further north come HERE for their care!) but there's only so much they can do. On the upside, if I get a referral I get my travel covered so yay for getting out of town? :)</p> <p>Thanks so much for listening to me rant, haha! </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557349 Fri, 08 Feb 2013 18:45:09 +0000 Mrs. Jacks 557349@https://boards.hellobee.com/ <p>@MrsDragon: Yes to the husband question.. Sort of. It can get complicated if he has a partial mutation or something, but it only happens rarely and a girl would be less affected than a boy. Or there could always be a rare de novo mutation (highly unlikely). Genetics is complicated stuff!</p> <p>I hope you can get the testing in a timely manner, but it actually sounds like you've thought out the contingencies really well!</p> <p>I should say that your tertiary care hospital is pretty far! </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557318 Fri, 08 Feb 2013 18:15:50 +0000 mrsmacandcheese 557318@https://boards.hellobee.com/ <p>@Mrs. Jacks: Not opposed, really, though it would complicate things. I believe I'd have to head out there early and hang out in the hospital for awhile (it's a 5 hour drive away and we will likely have a winter/spring baby). I also don't know how things would work transferring to a new OB but I would be fine with whatever it took to have a safe delivery.</p> <p>My understanding of hemophilia is that only women can be carriers and pass down the disorder (unless my husband was a hemophiliac, but he isn't) so I only have to worry about me. </p> <p>I think, when I get my referral, it would be nice to talk to the doctor at the local clinic about how well-equipped the local hospital is (although I think the doctor I'm seeing is more of a sports doctor than a GP or a family doctor so he might not know much). If I could get some kind of a 'here's what happens if you get pregnant and aren't sure of your status' play-by-play I would feel better.</p> <p>The other thing is that as long as they test my blood prior to conception and use that for their factor testing it doesn't matter if I'm pregnant when I get the results... so it's all really dependent on when I can get that specialist appointment (and I'm really bitter that my referral appointment was pushed back by a whole month!). </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557307 Fri, 08 Feb 2013 18:07:58 +0000 Mrs. Jacks 557307@https://boards.hellobee.com/ <p>@MrsDragon: Yikes! Complicated for sure! Are you opposed to delivering at the tertiary care center? I think I'd want that anyway (but then again, I'm a freak about these things!)</p> <p>Here's my question, if you are a carrier it's not going to change your desire to conceive and if it's a boy and you are a carrier you are going to the main hospital. If you find out it's a girl, you could opt to stay home, but then there is still a risk if your husband is a carrier and she gets two X's with it (I know just what you need, more what ifs). I guess what I'm saying is that the testing doesn't get you all the way to certainty unless hubs tests too. So if it wasn't going to change your desire to conceive, it would seem logical to just deliver at the tertiary care center. </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557290 Fri, 08 Feb 2013 17:49:33 +0000 mrsmacandcheese 557290@https://boards.hellobee.com/ <p>(The other thing is that if I tried to get genetic counselling... I'd have to get a referral and still be in the same boat! We do not have enough doctors in this town, at all). </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557288 Fri, 08 Feb 2013 17:48:30 +0000 mrsmacandcheese 557288@https://boards.hellobee.com/ <p>I haven't, but a well-versed friend calculated the odds for me and I'm at 25% for being a carrier, not knowing my mom or my sister's status (my sister did hemorrhage after birth but she said it was unrelated to any kind of blood disorder issue). With that being said, even if I were to be a carrier, I'd still only have a 50% chance of having a boy and then a 50% chance of having a hemophiliac boy.</p> <p>I guess the main thing freaking me out is the hospital aspect -- that, if I don't get tested and things go awry, I will have to be medevaced out. We had friends who just went through that in December and it was awful. </p> <p>I know I'm thinking waaaay too far ahead, for sure. But if I go to my March appointment and then find out my specialist appointment isn't until after we're already supposed to be TTC, I can't figure out if I should abide by that and postpone all of our plans (which makes me sad) or just go ahead and TTC and scratch the testing this time around (which makes me scared). </p> <p>When my sister went without testing (she had to, because she waited until she was pregnant to try to test) they essentially treated her as if she was a carrier, not knowing otherwise, and then she found out she was having a girl so it was less risk. But for us, treating me as if I'm a carrier would basically mean making a plan to not deliver in our hometown, unless we find out the sex (which Mr. D doesn't want to do, at this point) and find out its a girl.</p> <p>I hate what-ifs, if you can't tell. ;) </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557280 Fri, 08 Feb 2013 17:41:42 +0000 Mrs. Jacks 557280@https://boards.hellobee.com/ <p>Have you done genetic counseling? We did before we thought of having kids because of certain familial issues. They are really good at calculating the actual risks and presenting them to you. When we saw how low the likelihoods were, due to likelihood of genetic illnesses in the general population and to our ethnic heritage (even with a known risk factor on one side) we decided to forgo the actual testing. </p> https://boards.hellobee.com/topic/psyching-myself-out-over-genetic-testing#post-557273 Fri, 08 Feb 2013 17:36:03 +0000 mrsmacandcheese 557273@https://boards.hellobee.com/ <p>Hemophilia (low factor VIII) runs in my family -- all of my grandmother's uncles &amp; her father had it, my uncle had it (so my grandmother was a carrier), &amp; my aunt was tested and had low factor levels.</p> <p>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.</p> <p>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).</p> <p>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.</p> <p>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. </p> <p>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.</p> <p>But I also can't stomach the thought of not knowing and potentially putting myself or my baby at risk by being uninformed.</p> <p>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. :( </p>