Hi all,

I’ve just found out I’m pregnant, unplanned. My husband and I are genetic carriers for a rare disease with a 25% chance of baby inheriting it. So far our odds have gone affected, clear, affected, carrier (I have two loving boys).

I can have genetic testing so that isn’t the issue. My issue starts if they declare the baby healthy. I’ve always had tokophobia, particularly with regards to dying of an amniotic fluid embolism. These are really rare. A UK study showed an incidience of 1.7 per 100000 (0.0017%) and they are associated with a high fatality rate. According to a review into maternal deaths, the rate fluctuates between 0.26 and 0.8 fatality per 100000, which equates to 2-8 in million chance.

I am trying to rationalise. Even 8 in a million must be incredibly rare? I feel like on some level I’m struggling to rationalise. I don’t want to not go ahead and potentially have a child that is wanted out of fear but I can’t deny the anxiety is there.

thanks

naomi