Joe was eight years old when scans taken at his local hospital revealed a leaking valve in his heart. He was referred to Great Ormond Street Hospital (GOSH) for surgery to repair his mitral valve.
Joe’s mum Melanie explains why this surgery was so important: “The valve wasn’t shutting properly and was letting blood flow back into upper chamber of the heart. This meant the heart was having to work harder than it should have been. This could leave him tired. The surgeon was able to tighten up the valve so that it stays closed when it’s letting blood out of that section of the heart.”
Joe’s symptoms at the time of the surgery suggested he might have Marfan Syndrome and a genetic test when Joe was 15 also indicated this was the case.
Melanie explains the impact of the condition: “It’s faulty connective tissues throughout the body. This means the heart’s valves or the aorta are too elastic and expand too much.”
At 15, Joe needed further surgery to correct and replace a section of his aorta. To plan for the operation, surgeons created a 3D model of Joe’s heart and used virtual reality technology to examine the site of the procedure.
Joe was the first ever patient at GOSH to make use of this cutting-edge technology. Melanie remembers the impact it had on the whole family: “The VR software enabled us to put goggles on, use two hand controllers and feel as if we were moving through Joe’s heart, which was absolutely amazing. We all had a go. You could travel through Joe’s heart and the aorta. It was mind blowing.
“His surgeon used that VR footage as well to minimise any surprises and look at the heart from every possible angle.”
Joe’s surgery and the use of this ground-breaking technology was also featured in an episode of Paul O’Grady’s Little Heroes. Melanie explains what it was like to be part of the show: “It was good fun and a brand-new experience for all of us. Paul was exactly how you’d expect him to be. He comes out with all sorts of stuff. He’s very entertaining. Joe thought he was fun too.”
What the future holds
Joe is now back at home and recovering well after his surgery. He’ll begin his GCSEs at school later this year.
Joe will still need to come to GOSH for regular appointments, as Melanie explains: “Things are back to normal really. We just keep popping down to GOSH for the odd check-up. They like to keep an eye on him.
“From here on, there are no planned procedures but we will need to keep checking every year because other things can happen because he is still growing.”
After an important year in Joe’s treatment, Melanie reflects on her time at GOSH: “The speciality and the people there are amazing: to have this aorta specialist for a start, that knowledge is incredible. It’s great talking to the cardiologists, the geneticists, the nurses involved as well. It’s been a positive experience.”