The story of Elaine
1st march 2009 will be a day we will never forget. My 3rd child was born but something was wrong. Part of his body was outside. I remember what felt like a lifetime but was probably only a matter of mins before anyone could explain something was wrong but couldn’t say what. Pediatric doctor was phoned into the hospital. He explained more and told us kian was born with Bladder exstrophy. I have never heard of this in my life. Unfortunately only 2 hospitals in the UK deal with it and both in England. We stay Scotland. So plans were put in place. And less than 24hrs old kian was flown to Great Ormond Street Hospital. He had his first operation at 3days old to place his bladder back inside. Bladder exstrophy isn’t just a case of popping the bladder back in. The bladder is basically burst and isn’t connected to the penis. So more operations are needed. Kian had another at 21months of age which would see his bladder fixed, connected to his penis and also bladder neck tightened. He was also given a belly button. We stayed in GOSH around 10days. Unfortunately as time went on kian couldnt be potty trained. He constantly leaked. His bladder was tiny. In 2014 another operation took place with no help so in 2015 he was given a bladder sling operation and another redo of bladder neck. This unfortunately didn’t work either. Afew more treatments to no help so in 2018 kian under went a major operation. Bladder augmentation and mitrofanoff. Part of his bowel was used to enlarge the bladder and then his appendix used to create a stoma channel into the bladder so a catheter could be placed in and bladder emptied. 2 years on this operation has been a great success. Kian is constantly dry and out of any pull ups and nappies. Bladder exstrophy I a hard disability on a child but also the family involved. It is emotionally and physically draining. You spend time in hospital away from loved ones. Missed school work and social interaction. But we get there x