Pregnant with girl who will have X linked alports

[pinkcavalier210]

Hi

Not sure who will read this or why I'm posting but struggling with what to do regarding my results on my pregnancy

Long story short my husband has X linked alports syndrome found out aged 32 needed a transplant age 34 I was lucky enough to be a match and it's still going strong 8 years later

We never planned for children because of this and but then I have accidentally fallingl pregnant which was a surprise but I was really happy when I found out

However speaking to the genetics team with regards to the gender test we knew if our baby was a boy he couldn't possibly have alports as my husband would pass on the y chromosome so I was kind of pinning all my hopes it was going to be a boy we have however just found out it's a girl and she now will definitely become a carrier

I just don't know how to feel now ,taking the genetics syndrome away I would be over the moon with a girl but now all I feel is guilt as I don't know how badly this will affect her when she's born I know when she older and wants kids herself she has a 50/50 chance of passing it over and if she has a boy he will almost certainly need a transplant in his life time

I just feel awful to have passed on this gene not knowing how badly this could effect her

Sorry about the long post

[Bassetmommer NKF Ambassador]

Your concern is valid...but congratulations. The thing is this, in 20 years, when we hope she would become pregnant ....hopefully later, the science may have taken care of this being an issue or have better treatment. Best to you both. Enjoy your precious baby.

[Merny5]

I read your post and I do not have any suggestions or comments other than I know that you must be an emotional mess. I’m sorry you are dealing with this, but please do not feel guilty. The best of luck to you.❤️