Hello,

I'm 25 and I have Incontinentia Pigmenti which is a genetic disorder that they are still trying to work out, there isn't much about it out there but my family and I have lived with it for ever maybe not with a name for most of that ever.
I am 13 weeks pregnant, and they are trying to do their best in preparing themselves and me for IP and I am glad they are trying to understand it.. the genetics counselor is great, knows loads and when she was talking to me (as requested from the hospital) She was kind of shocked that I knew my stuff.
I may or may not pass this rare gene on to my baby, if it's a boy I have a 30% of bub surviving if he gets the gene, if he does get the gene he doesn't survive either 21weeks or full term. I understand and I do have the choice of termination which I have said no.



So I am prepared that I may be a carrier and pass this gene on and if so may loose my baby if a boy. BUT 13 week scan came.... Everything was perfect, dancing away being cheeky (I do have a nagging feeling bub is a boy)... And then the Lady was taking to long to get back, and then the doctor came in...


Apparently our baby has a concerning amount of fluid and she is worried about bubs heart as well... She said there is 3 hurdles bub needs to get over before being in the clear.


I was so concerned and focused on IP that I didn't think of this... I was absolutely smacked in the face so was my Husband. I had to do a CVS which wow, but we know we made the right choice and I get results tomorrow... I am absolutely terrified.
Doctor was saying that there is about 50% of survival. I'm so heart broken.



but I would like to know should I trust my Instincts more than the %?? because I don't believe there is anything wrong.... I feel it will be fine... But it's hard.