The story of Amanda
Owen was born 21st September 2005. When he was taken for his new born checks something was clearly not right. He looked like he had a hernia where his penis should have been. He was then wisked off to special care to find out what was wrong. Few hours later he was returned to us and informed he was born with a rare most sever form Epispadias (penopubic). This was a complete shock as not detected in any scans. The consultant at my local said he would need surgery to correct this defect but told me he’d be sorted by 2. They couldn’t have been more wrong. Sadly his case got sent to the wrong hospital who weren’t knowledgeable of this condition and it took us 2 yrs of fighting to get his case moved to Great Ormond Street. Since then it’s been a whirlwind of operations procedures including The Kelly’s which involved reconstruction to his penis make him a bladder neck (bladder reconstruction) as this never formed. He still continued to leak so then had bladder neck reconstruction again but didn’t work. Few smaller ops which didn’t help. He then had a yr of biofeedback but noting helped. In 2014 a week after he turned 9 Owen had major operations bladder augmentation to make his bladder bigger using bowel as his bladder never grew and a mitrofanoff using his appendix to form a stoma channel to his bladder neck which would be used to drain his bladder. He was finally dry and out of nappies. Sadly a few months later he started to leak again. Had tests done and found he had developed a hole in his bladder neck. He was taken in for deflux (bulking agent) to his bladder neck but the hole was too large so he had to have bladder reconstruction again they also found a kink his his mitorfanoff channel so also fixed that. He needed deflux as still had a small leak a few months later. He then has more issues needed more sugary over next next 3 yrs when it was then decided in May 2018 he’d have to have his mitrof totally redone. Removed the channel made from his appendix and formed a new one using bowel he now has a Monti mitrofanoff. He’s had a very roughy journey as on top of all this he also has Autism spectrum disorder sensory processing disorder serve anxiety amongst other things linked to ASD. His consultant said he’s been an externally difficult case but Owen has now nearly made it to 3 yrs operations free and he’s dry. It’s been hard going having two older boys missing events due to being in hospital and Owen missing school but he’s been amazing and so proud of him.