Little Heroes – Lucas

Two-year-old Lucas travelled from Belfast in Northern Ireland with his mum, Caitlin, and dad, Johnny, arriving at Great Ormond Street Hospital (GOSH) for specialised retinal laser surgery on a detached retina, caused by a rare eye condition called Coats’ disease.Caitlin says: “It didn’t hit home until after the operation, but the surgeons at GOSH probably saved Lucas’ eye. At the time I just hadn’t realised the severity of it all.”

It all started when Caitlin noticed a slight squint. “In late 2018, I noticed Lucas had a small squint," says Caitlin. "By January, it was much more pronounced. We went to our local opticians and saw a health visitor for advice. That led to a referral to a hospital in Belfast, and then we were told we needed to travel to London, to be seen at GOSH.

“At first I didn’t realise what a big deal the treatment would be. I thought perhaps he’d be given an eye patch, or some glasses that would help correct it. I couldn’t believe it when they told us his retina was actually detached. He was diagnosed with Coats’ disease, which means he has abnormal blood vessels behind his eyes that then leak and can pull the retina off. He needs ongoing care for the condition.”

Time was of the essence, because the longer Lucas’ eye remained untreated, the lower the chances of successfully reattaching his retina, and the higher the risk that he could even lose his eye. The family arrived at GOSH for an assessment by the clinical team, led by Mr Chien Wong. Together, they reviewed Lucas’ eye, his vision, and took images of behind his eye to help guide Mr Wong’s decision on which kind of surgery to carry out.

Mr Wong explains: “Coats’ disease is rare, affecting around 1 in 100,000 people, or less. We planned to start treating Lucas using laser surgery. I explain it by asking parents to imagine the retina is a like piece of wallpaper peeling off of the wall. Coats' disease causes the blood vessels of the retina to leak fluid underneath the retina, causing it to peel off the wall of the eye.

"My job is to stop the blood vessels from leaking using a special retinal laser, which then enables the retina to gradually dry out and hopefully start sticking back to the wall of the eye. In some children, more invasive treatment is subsequently required to drain the fluid underneath the retina if it does not dry out on its own.”

“Lucas' recovery has been good because the surgery was not invasive," says Caitlin. "When he woke up, his eye was just a little red, whereas I was imagining something much worse. But Mr Wong explained he was able to use the less invasive approach. He was just amazing and I was really pleased with the treatment. Lucas’ clinical team did what they had to do in the best way for Lucas. They saved his eye.”

“Lucas' right eye is absolutely fine, the condition only affects his left eye. It’s typically the case that it only affected one eye. We’re still under GOSH’s care, and are travelling for appointments and check-ups with the clinical team. We don’t know if his vision will improve, but the main aim of Mr Wong was to save Lucas’ eye. If some of his vision does come back it will be an added bonus."

“Our hospital back home is great," says Caitlin, "but GOSH is just amazing. Everyone has been so wonderful, so attentive, and whenever we came to GOSH, I just felt really at ease. You can absolutely tell that the most important thing to staff is the child, and looking after the child. They put all their time and effort into the patient. And that really came across. We really feel so unbelievably grateful to get this treatment at GOSH.”

Of their experience in front of the camera, Caitlin adds: “Being involved in filming was absolutely brilliant. Flying over was such a worry – it was our first time so we were really anxious. However, meeting the crew was such a brilliant distraction. It made the experience so much fun. Lucas had an absolute blast. It was such a good experience.

"At first I was apprehensive, but when I was told it was with Paul O’Grady and for the Little Heroes series, I thought, 'We have to do this for Lucas'. It is something nice to look back on. We are so glad we did it.”

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