Don't feel bad Heather...you and DH have to make the best decision for your family and y'all live with a reality that many others will never know or understand. I pray the results of your testing bring nothing but piece of mind.
AFM, I don't know yet. I have to see what my options are. I'm mostly doing the regular ultrasounds, glucose test, but I want to see if my provider offers the NT scan. I might do that of it's an option.
Heather if I was in your situation I would do the testing as well. I dont even remember what testing I had done the last time. I do know there was some testing that they wanted me to do but I refused. I think it was one of hte genetic ones. There was one the midwife told me often gave a false positive, and I did not want to have extra worry for nothing. I would prefer as little testing as possible- I'd love to skip the glucose one, but I am goign to a new office and I do not know what they require/do etc.
Can you tell me more about the CVS test?
Heather, don't feel bad about your decision!! I think it's actually a hard decision either way. For us... no testing really. We will do the 20 week ultrasound. No glucose testing for me. I've never had bad results in the past, so my midwife had no problems with me skipping last time. I may end up having more ultrasounds done close to the end. My last baby was very small at birth, and we have no idea why, so we may "look a bit more into that" as we get closer to the end. Although, he was 100% healthy, so maybe it's not really an issue?!?!
Thanks everyone. It's just such an upsetting situation. I'm much less stressed this time as we have DD and she's fine...but the chance still exists.
I've noticed that the judgement come mainly from people who know nothing about our life and our DSD. Those I'm close to totally understand the situation, whether they are religiously opposed to genetic testing or not. They know the type of people we are and also know the specifics about DSD and her life. A lot of people who are opposed to the testing don't have a genetic pre-disposition to something this 'bad' nor do they already have ONE special needs child. One special needs child as low functioning as DSD is a lot of work and emotional stress...multiply that by two. Yikes. Also, DSD had a lot of medical testing and problems when she was young, which is no fun for children. Anyways, I guess I can't convince everyone and I just need to let it go. It's really hard for me.
There is obviously a risk of miscarriage with the procedure. I'm pretty sure the risk is higher with CVS than Amnio but the timing of the CVS (10 weeks-ish) is a high risk m/c time anyways, so who knows if some of those losses would have happened regardless. Hard to say. As we are a ferry ride away from where the hospital is last time we rented a hotel room and I put myself on 24 hour bed rest. This wasn't mandatory, I just did it as an added caution. Everything was fine though. I had a bit of spotting from the cervical clamp they used, but that was all. This time we're going to try to do everything the same. I hope my mom can watch DD over night so we can stay over night.
Because we are in Canada and the geneticists can't guarantee that DSD's condition won't happen again the procedure is free for us. We even get a ferry voucher. The only thing we paid for last time was our hotel room.
The blood is then sent away to the DNA lab which takes a couple excruciating weeks for results. They test for all the 'counting' genetic conditions, like Downs. The ones that are obvious. That result came back first as it's the standard test. Then they went and looked at the exact spot that DSD has a problem in. She has a deletion in her 22nd chromosome in the 13th quadrant. So the scientists looked at DD's 22nd chromosomes and made sure they matched and nothing was missing. I'm not sure how many different sets they looked at. Anyways, all came back as fine.
The thing to remember is this doesn't test for everything. There are probably millions of variations of genetic conditions. It just checked for the counting ones and the one that DSD specifically has (which was our biggest concern). It all came back as normal though and we found out DD's sex to an accuracy of 100% at 13 weeks. That was a sort of bonus of the whole thing (if you can find a silver lining). Also, I was able to relax, enjoy the pregnancy and really bond with DD. For the years prior to getting the results DH and I had this cloud of doubt over TTC and whether he COULD even make a child without that conditions. See DSD was his only child and her mother had 2 other 'normal' children with 2 other different dads (but that's another story!).
So, ya, that's a CVS in a nut shell. I guess I'll be doing it again in a month or so. We won't get our appt date until after our dating ultrasound next Thursday. I'm hoping in the 10th week, not the 13th week, lol. It took about 3 weeks for results last time and I'd like to not be obviously showing before I get the results.