Has anyone had the CVS test?

[MrsStormtrooper]

So I’m only 4 weeks pregnant, but we have decided to go for the CVS test at 10 weeks because of a genetic condition I have which has a 50/50 chance of being passed down.

I’m getting antsy about waiting for the test, and I know waiting for the results will be worse. It’s awful trying not to feel too “attached” when I’m getting morning sickness and obvious pregnancy symptoms. We knew while we were TTC that this may be the case, we were actually going to do PGD (a type of ivf) but we decided against ivf for the time being due to me having endometriosis and the chances of it working is slim. I was torn between a rock and a hard place - my husband and I have decided that we will terminate if the test is positive. But it’s super hard. No judgement please :(

my genetic condition isn’t one of the common conditions that they test for, it’s actually quite rare. So I think the results will take about two weeks to come back? I’m just all over the place with not knowing how to feel.

I'm in a very similar boat. But it sounds like I'm one step behind you. I have a 50/50 change of inheriting a genetic condition, and a 50/50 chance of passing it on. I'm 6 weeks pregnant and starting genetic testing for me this week. If it comes back positive I'll have to test the baby.

It's so difficult not to get attached. I'm just focussing on what's happening for the next few weeks. I'm booked in for an early dating scan at 8 weeks in preparation for possible CVS. I hope everything goes your way.

Oh bless you! Keep me posted about how it all goes, it’ll be nice to have a friend through this as someone who unfortunately understands.

I have a midwife appointment today, due to the nature of my disabilities so at least it’s early enough that I can ask these things. May I ask, are you telling the midwife that you may terminate if the test is positive? I’m worried about judgements but I just don’t know what to do.

Hi,

I've been in the same position, it definitely takes any excitement out of early pregnancy. I have a 50:50 genetic condition as well, and I had an amnio last year, as they couldn't get to my placenta for a CVS. Unfortunately you have to wait even longer before the amnio can be done, which was a nightmare, and not something I was prepared for.
I think it's up to you whether you tell the midwife or not. I tend to think people only test if they are going to act on the results. Sadly I ended up having a TFMR, and whilst I haven't told many people about it, the midwives and nurses that I met were all lovely and I never felt any judgement for my decision.

It’s awful when it’s 50/50, it’s a yes or a no, a boy or a girl and those odds are awful. I don’t think the amino is something that’ll pick my condition up, I’m not 100% sure on that though.

I’m sorry that you had to TFMR. Do you have any advice, whether it’s for the waiting until the test or any advice if it comes to having to TFMR? I’m petrified of having a termination, I’ve had one about ten years ago but I was 5 weeks whereas this time it’ll be more like 13ish weeks. Trying to not get attached is harder than I thought.

I think the wait is hard, but knowing early that we have to go through this, rather than finding out after a scan is helpful as at least you expect it. I was working so that helped take my mind off things.
Hopefully you will have a positive result from your CVS, but for me the TFMR was really hard emotionally. I opted for medical management, and the process was ok and reasonably quick, but accept any help, both physical and mental that you need. I still think about the baby most days, and wish I had made better use of the bereavement midwife. Hopefully it won't come to that for you. Remember, there is as much chance of everything being ok as there is it not being ok.

That is very true and very helpful, thank you. I knew that this would be hard, but my pregnancy hormones have truly kicked in now so I’m weepy over everything 😅

my midwife appointment went well, although I’m down as a high risk pregnancy now due to my health issues. Did you find out the sex of the baby? I’ve read with the CVS that you can find out, not sure if they do that here in the UK though. My condition doesn’t get affected by gender so not sure if they’ll tell us, I wouldn’t want to know until we had the results anyway.

I’ve just had a phone call from the genetics department, in short apparently I may be denied the CVS test if I may end up terminating as my condition isn’t “severe” enough. I’m on the severe side of my condition, but because it’s so varied they may not want to do it. I said my husband and I haven’t decided yet if we’d terminate based on the results.

they’re have a multidisciplinary team meeting on Friday to discuss if they’ll let me have the test. I just don’t understand why they’d offer it if they won’t let people with genetic disorders have it. I really hope they’ll let me do it, unless I just have to lie and say we won’t terminate but then do it anyway, it just won’t be with their care team and within the timeframe to get a regular termination. Ugh, this isn’t what I need.

Sorry for the radio silence. It was all just a lot to deal with. I had my dating scan and genetic test results come though last week. Everything was fine with the baby and my genetic results came back negative so I don't need CVS and won't have to worry about it again. I'm so thankful I can now continue as a normal pregnancy.

I'm 10 weeks today and now anxiously waiting for my 12 week scan.

Did you get anywhere with your CVS? I really hope it all went ok for you.