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

Bump

Hi,
Ok well firstly I remember the sheer panic of being where you are so unmumsnetty hugs!
My son was diagnosed with BE and epispadious when I was 23 weeks pregnant. My antenatal care was transferred immediately from a local hospital to a uni hospital some distance away. I had monthly scans ans and an mri at 34 weeks.
It was explained to me that my child's care would be transferred to great Ormond st at birth tho no direct contact then.
I was induced at 39 week tho ended up with c section, failure to proceed. First baby.

Ok part two. Birth was pretty medical, lots of paediatricians there. He was shown to us then whisked off to scbu before we could have skin to skin.....gos later told me this had not been needed; he could have stayed with me, wish I'd been more assertive.

We saw him and had cuddle and skin to skin few hours later. Following day transferred to gosh and I self discharged and went with partner in car....wouldn't let me in ambulance with him. On arrival at gosh, he was in normal crib and I could breast feed him for first time....they were amazing. He had closure op the next day as nd was then kept ventilated as nd sedated for ten days on icu....not all consultants do this. Accommodation provided. I expressed milk for his tube and we sat by cot.....little to do.

Transferred to main ward after 2 weeks and in hospital for a further week. At that point, I could stay with him; he had own room and I had camp bed....partner couldn't stay. I kept pumping milk and trying 5th o breastfeed.

Came home at about four weeks. Got him latched on with midwives help, he breastfed til 14 months. Normal baby bar genital issues.

He is three now. Willy very small but now wees out of it following op at 16 months. He's had 2 big ops x and 2 small ones. Seen at gosh about twice yearly. Nowhere near potty training. Ongoing really but not much different to peers.

The first couple of weeks were traumatic but gosh were amazing as nd as much support.

Oh and there is a Facebook group, if you Google parents of uk children with bladder exstrophy it should come up.

I have to go now but you are welcome to pm me.

Hope you are ok and thinking of you.

Bump for op