Bladder exstrophy

Having googled this to see what it is I see that it is very, very rare so quite possibly you won't find anyone here. Have you tried looking for a support group on line? I found a marvellous one for DH's cancer on Facebook and it's been a great help being able to talk to people who understand.

I hope your grandchild is getting on all right. I think it's worse being a granny than a parent because you have to worry about the parents too.

www.gosh.nhs.uk/medical-information-0/search-medical-conditions/bladder-exstrophy-and-epispadias
They may be able to help with support as well.

Thanks for taking the time to answer it was a long shot really xx

Remember there are always people here who will offer moral support, even if they have no practical knowledge of the problem

winefride deedaa is correct about the range of all sorts of groups on Facebook, and other support on here because I found a group m.facebook.com/lovewhatreallymatters/posts/1070509806304750

for you and best wishes for your grandchild, it seems that there are good outcomes for babies born with this rare condition.

winefride sorry I realise I posted the wrong link (my reading took me off at a tangent). This is the UK FB group's link:
m.facebook.com/groups/105638138126?tsid=0.0065390362151602766&source=typeahead

I am interested because I knew someone years ago who had a baby with a similar condition.