Genetic counselling

[Aurora20]

Hi everyone, has anyone had genetic counselling and if so what to expect?

Thank you xx

[Millbanks]

Hi lovely, is this for pre PGT testing? We had it as it was mandatory before going ahead with our clinic. The dr detailed what/how/why of the testing and the possible outcomes… it was more informative than counselling I felt..Also I’d done a lot of reading about it so very little was new to me. Xx

[Aurora20 in reply to Millbanks]

Hi, I’m not too sure actually if it will involve PGT testing. I have a genetic condition but from what I know I don’t think they can test for it, but it’s a 50% chance I can pass it on which is why I’m not sure I want to have children and pass it on, a decision I’m finding really to hard to make! So I asked my consultant to refer me to a genetic counsellor but I’m not sure how much help they can be xx

[Millbanks in reply to Aurora20]

Ah in that case maybe more of an informative chat? Fingers crossed they can find a solution xx

[Aurora20 in reply to Millbanks]

I think so and maybe just some guidance! thank you xx

[ChloeDE]

Same as above. We had to have genetic counseling before IVF with PGD testing for a genetic issue I could pass on. It was more about giving us information, explaining the process and managing expectations.

[Aurora20 in reply to ChloeDE]

Thank you, yeah I did think it would be more of just an informative situation, basically just some guidance!

[ChloeDE in reply to Aurora20]

There's a Facebook group called something like IVF with PGD and PGS testing. There are lots of people in the group who can give advice.

[ChloeDE in reply to ChloeDE]

Also, we did 2x rounds of PGD IVF and were unsuccessful. We then went down the donor egg route and have twins. It might be worth considering if they can't test for your condition.

[Aurora20 in reply to ChloeDE]

If you don’t mind me asking how did it feel to go down the route of donor eggs? It’s an option I brought up to my partner but he’s not happy to do it

[ChloeDE in reply to Aurora20]

After our first round of IVF, we got no blastocysts. We were preparing for a second round but had a frank conversation about what we do if it happens again. Round 2, we got no blastocysts again. I had already started looking into clinics. We went to Czech because it was faster, cheaper and got all of our donor's eggs. My partner was apprehensive too but we went over earlier to freeze his sperm (because he was going to a Zika country) and he felt good about the clinic. We used my partner's sperm and donor eggs. Everyone is different but it wasn't really a difficult decision for us. It just seemed the logical thing to do. We could have continued trying with my eggs but, even if we got to blastocyst, the chance of carrying my gene was 50%.

We don't regret it at all. There's no question in my mind our children are 100% ours.

[Bramble_]

I had it after being diagnosed with balanced translocation. Basically they give you facts and figures around your own situation, it can be quite vague if you have something rare/under researched and I would recommend joining ‘unique’ a rare chromosome issue magazine. If you have any specific concerns then it’s a good way to get them answered and just talk to someone knowledgeable. But it won’t change your life, is my experience.

[Aurora20 in reply to Bramble_]

That’s the issue I don’t think they can even test for my condition, so I will definitely look into that magazine! I think I have made my decision about not wanting to pass it on to my children but for some reason I feel like talking to someone about it help in some way