Doctors had identified a string of renal and urinary abnormalities before young Harrison was even born. This list continued to grow as he entered the world and ultimately doctors diagnosed him with an incredibly rare disorder called Urofacial Syndrome.
“The hardest part about the in-utero diagnosis was the fear of the unknown. We were so concerned he would have to be rushed to theatre the day he was born. He had his first surgery when he was just seven weeks old, and his second when he was eight weeks old,” said his mum Alicia.
When the Urofacial Syndrome diagnosis finally came, Alicia couldn’t help but feel relief.
“The long list of medical conditions that kept confusing and baffling the doctors suddenly made sense. No family wants to get any diagnosis, but if it helps tie all the pieces together, then it’s going to help us move forward”.
Hospital remains a second home for Harrison – who’s now eight – as he’s undergone 41 surgeries to try and correct or improve his renal and urinary system, from bladder augmentations to bilateral pyeloplasty. His biggest issue at the moment is chronic pain. His kidneys have been unable to properly drain due to the complications in his urinary system – specifically his bladder.
To help with his quality of life, just before Christmas he had a suprapubic catheter (SPC) placed into his bladder through his abdomen, allowing his bladder to constantly drain. Due to frequent urinary tract infections, this catheter needs replacing via a quick trip to the theatre around every six weeks. This isn’t a viable long-term option, but for now, the SPC is making a huge difference to his daily quality of life.
A recent appearance on Juiced TV gave Harrison, Alicia, and dad Matthew, another reason to smile.
“It was the first time ever that he was happy to go to the hospital. He spent all weekend choosing outfits; he wanted to wear a tie. He was so excited. It was something he got to do for no one else but himself.
“He’d wanted to do Juiced TV for months and months, practicing interviews at home with the iPad. I think he can recite every single word of that episode now. The child that we saw during the filming of that Juiced TV episode is a child we don’t see very often. He forgot about all of his pain, and just relished in the moment”.
Alicia’s advice to families going through a similar journey is to try to not let your child allow their health problems to define them.
“We’ve always taught Harrison to own his differences – to own his tubes or his bags or whatever he’s got at that time, and even though he owns that, he doesn’t need to let it define who he is”.
She also says trusting your doctors is paramount.
“We trust our team explicitly. We have an amazing team, and we consider them family. We really do. We’ve been through so much with them and we’re so thankful for them all.
“Obviously, you’re always going to do your own research, but at the end of the day, they have your child’s best interests at heart just as much as you do.”
Juiced TV is made possible by the Children’s Hospital Foundation at the Lady Cilento Children’s Hospital. Support services and entertainment programs like Juiced TV are vital to enhancing the healing environment to help kids get better and go home sooner.
With your support, we can help more kids like Harrison by expanding the service into regional hospitals across Queensland so every sick child and sibling can experience the magic of Juiced TV.
You can watch Harrison’s Juiced TV episode here