My baby has bladder exstrophy

[weezie78]

Hi there.
I am 21 weeks pregnant and been told my baby has bladder exstrophy, it has been a massive shock to us! Has anyone had a baby with this? I just really want to know what to expect, how long will baby be in hospital for when born? I'm feeling quite lost at the minute so any information and advice would be great. Thanks

Hi Weezie.

I don't know anything, but wanted to bump your thread as less important ones like my Stilton one above were pushing it off the bottom. Have you done a MN search on the phrase?

I think I did it here www.mumsnet.com/SearchArch?search_origin=mobile&mustmatch=Bladder+exstrophy&dontmatch=&nickname=&fromDate=&toDate=&topicmode=All

Hope that helps... Otherwise just type in search box, seems that other people on MN have had babies with same problem too.

Lots of love! X

Bump.

Bump

Bump

You need to discuss this with the fetal medicine consultant and quickly. Google won't tell you about your baby's situation. You need to know what you are dealing with and what your options are. I hope someone can share their experience on here but you absolutely must seek expert advise right away.

weezie, have you tried posting in the children's health section? You're more likely to get people shove had babies with similar diagnosis and come out the other end. They might not be looking at the pregnancy board...

Hope you get some help and advice soon.

Also just found this which may provide more detailed support: www.bladderexstrophy.co.uk/

Hi thank you for your help. I am under a consultant at oxford hospital who we saw last week, I will be having scans every 4 weeks also. I am just really looking for parents who have been through the same thing. I would like to know what happened when their baby was born. Thanks again for your posts.

I would definitely post in the children's health board as most people who've had their babies won't be looking at the pregnancy boards. Wishing you all the very best.

Bump for op