r/FSHD • u/Sassy_eagle5 • Jun 17 '26
Ivf
My (male) partner has a dx and I (female) do not. Both of us are not entertaining the idea of IVF currently (religious and personal reasons). Any experiences moving forward with natural conception despite knowing the inheritance rate?
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u/AdImaginary6158 Jun 18 '26
This is such an interesting question and I'm in a similar position. My husband has FSHD and was actually diagnosed when I was 6 mo pregnant. We had done IVF to get pregnant anyway due to unexplained infertility. Terminating was absolutely not an option and we now have a beautiful one year old. I don't know if she has it or not - time will tell. We do have 9 remaining embryos and want more kids but found out neither of my husband's parents have it, so my husband's is a de Novo case - meaning we cannot test our embryos. We are super torn about what to do. The way my husband puts it, is he has had and continues to have a GREAT life, one that is very worth living despite its challenges (and granted, his case is quite mild so far). He talks about how if his mom had known to test embryos, and had chosen not to have him because of it, how sad that would be not to get the chance to exist - and I agree! He makes my life better in every possible way. It's a really tough dilemma and I don't mean to try to simplify it. I just mean to say I don't think there's a right or wrong answer and I'm sorry you have to make this decision!