[Puuddleduck83]

I don't actually know if I am in the right forum but I was wanting some advice. My husband has FSHD (a rare form of muscular dystrophy) and any baby we conceive has a 50% chance of inheriting the disease. We have been lucky enough to have one baby (15months) who is unaffected but I recently terminated a pregnancy after we found out the baby had the disease (the worst experience ever). I have been told by our genetics counsellor that we could possibly undergo IVF and do pre-implantation testing but our chances are very low of bringing home a baby. We now face the hard decision of trying naturally again or seeking out IVF clinics that might help us. We don't know what to do Has anyone got any advice on the subject? Has anyone else gone through a similar thing? I'm really sorry if I am in the wrong spot to be asking this.............

[bree18]

Hi, there are a few if us in the IVF with PGD buddy group who have done/are doing genetic testing. Pop in there and say hello and hopefully we can answer your questions.
My personal experience is that I also have a genetic 'mutation' that gives my children a 50% chance of also having the gene. I have done two IVF stimulated cycles with PGD (preimplantation genetic diagnosis) and have a 15 month old DD from the first cycle, and am currently 6 weeks pregnant from my second cycle. It does work but it is also a difficult road to travel however all worth it in the end.

[Lokum]

I have been told by our genetics counsellor that we could possibly undergo IVF and do pre-implantation testing but our chances are very low of bringing home a baby.

Sorry OP, that you are facing this difficult situation.

Since you've been pregnant twice in the last couple of years, it seems like you would have a shot with IVF with PGD? Depending on your age, and given you're not infertile, and your embryos would have a 50/50 chance of being suitable/unaffected, it sounds like your chances of a take-home baby are better than plenty of IVFers.

Maybe you should meet with a fertility specialist who can give you a realistic assessment of the costs, time, risks etc involved in IVF with PGD for your situation, and their assessment of your prospects of a take-home baby?

good luck.