Hi Positive - thanks for sharing your experience and for trying to look up Kelly procedure. I think this has probably become practice since your DD had her procedure.
We did not know about DD's complications before she was born - apparently there is about a 50% chance of it being diagnosed in utero (sp?) in the UK. As I see it - I would have only spent 20 weeks worrying about it if I had known before she was born, the only thing we would have had more chance to prepare was for someone to look after our DS, but we were lucky enough that my Mum just dropped everything to be with him during the week and my PIL took over at weekends (they both work) to let her get home and get things sorted. Theoretically it should have been diagnosed at our 20 week scan as I was sent out to have a drink and then come back in again, so the sonographer could see the baby with a full bladder - something she evidently didn't see as there was no bladder to see full!! But hey, am quite philosophical about these things. Reminds me though - I did mean to write a letter to the hospital so they could use our case for training purposes
When she was born, noone at our local hospital knew what it was - they clingfilmed the area and took her up to SCBU and then my DH had to help the consultant work the digital camera so they could take photos to send to the bigger hospitals. Once they got onto GOSH they knew straight away what it was, so that was a relief. Mind you, I was planning a home water birth, but not only the first, but also the replacement pool we hired both had punctures, so I'm now well and truly a believer in fate, as we were obviously meant to be in hospital for her birth!
As I say, we are really lucky that DD was born in this country where GOSH have specialists in this condition. Also, although DD has bladder exstrophy, had a cyst on her bowel a malrotated bowel and her appendix is up under her left rib, really she has so far suffered very little complications from it (touch wood). At 1 day old she went for surgery where they removed the cyst, unrotated her bowel, formed a bladder from the plate that existed and a path for it to drain. They also brought her pelvic bones together and she was kept paralysed and sedated for 9 days afterwards to allow her optimum recovery. I'm also a firm believer that the fact that I managed to express for first 2.5 weeks for her tube feeding and then bf her for a year has not harmed her recovery, but then it doesn't really matter whether that actually helped, or just made me feel better
I do just think that there are many worse things that could have happened to her than this.
I don't know what osteotamies are? Maybe we have yet to learn. Luckily her pelvic bones do seem to be healing well (as far as we can tell without xray, etc so far) - she started crawling at 6.5 months (shock - DS didn't start 'til 9 months) and is taking her first proper steps now at 12.5 months, so seems to be doing okay on that front.
Have been told her reproductive organs are fine - Consultant actually said to DH - our expert who sees adult bladder exstrophies here says that they tend to be more fertile than average, so you need to have "the chat" early on with her - DH responded that she wasn't going out 'til she was 25 and the consultant said - "No, really, you do need to be very clear with her" - !!!!!
Anyway, am waffling, but is nice to hear from someone whose child has been through this and is doing well. Thanks!