My husband and I found out today via a pre-pregnancy screening that we are both heterozygous carriers for Familial Mediterranean Fever. This means that we have a 1/4 chance of having a baby with the full blown disease. At best, people with FMF are completely asymptomatic and lead normal healthy lives. At worst, people with FMF have weekly episodes of severe abdominal and joint pain lasting 2-3 days as well as kidney problems requiring daily medication. Most FMF patients are somewhere in the middle and most ashkenazim (us) fall on the less severe side of the spectrum.
We’ve had a consult with our doctor and can move forward with conceiving naturally knowing the risks, or undergoing IVF and selecting embryos that do not inherit both genes. Both options bring up a number of ethical and moral dilemmas. We feel uncomfortable with the concept of “playing Gd” especially as FMF is not life threatening, but I also can’t justify rolling the dice on this despite the odds being in our favor.
I’d love to consult a rabbi but between a cross country move and Covid, we haven’t identified a Jewish community in our new city.