It took several years and a referral to Great Ormond Street Hospital (GOSH) before Patrick's son Michael received a diagnosis which revealed a physical cause for his wetting accidents. Patrick shares their story and why he feels its so important to reduce the taboo by raising awareness of bladder and bowel issues.  

Michael, my eldest, now 10, was referred to GOSH by our local NHS paediatrician at the age of four. We had sought the advice of a local private paediatrician when Michael started school. He was still having "accidents" with wetting or pooing himself, whereas his younger brother Ciaran who was 22 months younger was dry throughout the night. My wife and I kept asking each other, "what are we doing wrong?". Unfortunately, the private paediatrician wasn't helpful at all, and even said, "that if there was anything wrong it would have shown up by now". Effectively, putting Michael's "accidents" down purely to psychological issues.

My wife and I kept asking each other, "what are we doing wrong?"

Getting a second opinion

Our GP had already referred us to our local paediatrician, so, when the appointment came through, we thought there was no harm having a second opinion. Thankfully, our NHS paediatrician was wonderful and thorough. We quickly obtained a referral to GOSH and following a few simple tests found that Michael wasn't fully emptying his bladder and that his urodynamics weren't quite right. Michael was initially diagnosed with "Hinman syndrome" or "non-neurogenic neurogenic bladder" and informed he would be monitored annually. We were also informed that it was likely it would be something he would grow out of...

Searching for answers

At the age of 8, nothing had really changed for Michael. It was also hard for my wife and I at home. We would have to change the bed linen for Michael every day as he would wet himself every night. We also worried for Michael, as at school pick up, he would be soaking wet and smell of urine. Luckily, Michael was/is a well-liked boy in his class and hasn't appeared to have suffered too much bullying, but as a parent you still worry that may be happening. So, as nothing had really changed, GOSH decided to perform an investigative cystoscopy and fluroscopy which showed Michael to have a large diverticulum and trabeculated bladder. This meant that there was a physical problem and not just related to psychological issues.

Luckily, Michael was/is a well-liked boy in his class and hasn't appeared to have suffered too much bullying, but as a parent you still worry that may be happening.

Making decisions 

Initially, Michael's wonderful consultant at GOSH wanted to be surgically invasive and perform a iliocystoplasty and mitrofanoff. Effectively, this would mean taking part of Michael's bowel and attaching it to his bladder to make a bigger bladder, then taking his appendix to form a tube from this new bladder to his belly button. He would then have a valve placed here from which he could empty his bladder.

My wife and I were absolutely stunned. We understood the rational. It would help make Michael "dry" and reduce to potential risk of hydronephrosis to his kidneys. But to us, like all parents probably, we couldn't get our heads round our 8 year old having major abdominal surgery. Constantly, we thought, "he's only 8, surely things could change?". Again, Michael's consultant was very patient with us and explained that the diverticulum was not going to fix itself. He did suggest, possibly sensing our anxieties, that Michael had a more conservative surgery where only the diverticulum was removed.

Life post surgery

Michael had the surgery in August 2020. Thankfully, whilst it hasn't fixed everything, he no longer wets himself at school. To my wife and I, this is huge. Yes, he still wets himself at night. Yes, it's a chore for us to have to constantly change the bed linen. However, he'll be going to secondary school in September and we can only hope that he can lead a relatively normal life without being teased or bullied. Sleep overs and school trips may be a bit difficult but not impossible. We have bought special pyjamas which help but nightly use unfortunately results in a rash as it keeps all the urine in and against his skin.

Reducing the taboo 

Wanting to support ERIC and raise awareness of the problems some children have to go through with bowel or urinary issues has obviously become close to our hearts. Therefore, when Michael's younger brother Ciaran and his football team needed a new football kit it was an ideal choice to have the ERIC logo on the front to help reduce the taboo that unfortunately too many children have to suffer.