Gransnet forums

Ask a gran

Bladder exstrophy

(7 Posts)
Winefride Sun 01-May-16 15:50:54

Has anyone else got a grandchild with this congenital condition ? Would love to hear from you

Deedaa Mon 02-May-16 17:13:48

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.

Nelliemoser Tue 03-May-16 08:27:10
They may be able to help with support as well.

Winefride Tue 03-May-16 08:50:20

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

Deedaa Tue 03-May-16 21:58:40

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

Grannyknot Wed 04-May-16 06:50:13

winefride deedaa is correct about the range of all sorts of groups on Facebook, and other support on here smile because I found a group

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

Grannyknot Wed 04-May-16 07:25:28

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:

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