How GOSH saved Lucas’ eye
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.”
“In late 2018 I noticed he had a small squint and 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.” Explains Caitlin.
“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 which 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.
Caitlin says: “When he was diagnosed it was hard for the professionals to say how much vision he had in that eye, but they thought it might be little-to-no-vision at all.
“Later on, when we had the follow-up appointment, I asked if Coats’ Disease had caused the squint which Mr Wong said likely. We learned that when we saw Lucas’ squint, his retina was detached. The whole time he was losing sight in his eye and I didn’t know. That just broke my heart. His right eye is absolutely fine, Coats’ Disease only affects his left eye.”
Mr Wong, Vitreoretinal Surgeon, 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 gradual dry out and hopefully start sticking back to the wall of the eye. In some children, more invasive treatment is needed to drain the fluid underneath the retina, if it does not dry out on its own.”
Waking up from the operation and an overnight stay Lucas’ mum Caitlin explains: “His recovery has been good because the surgery was not invasive. When he woke up his eye was just a little red, whereas I was imaging 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.”
Caitlin says: “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.
“Mr Wong explained to us that Lucas’ condition won’t hold him back. He may not be a fighter pilot, but he can do everything else he wants. It shouldn’t stop him. He can do any job. It was horrible to think your child would not be able to do everything other children could do. Getting that reassurance was amazing. Now that we know he has Coats Disease, he will have to regular check-ups. He also has glasses now which were prescribed at GOSH as well.
“Mr Wong and his team probably saved Lucas’ eye. This didn’t hit home until afterwards and I had a moment where I broke down. At the time I hadn’t realised the severity of it all. He could have ended up without an eye.”
“Our hospital back home is great 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 those staff is the child and looking after the child. They put all their time and effort into the patient. And that really came across. To be given this opportunity to come here and so quickly is something we appreciate so much. I just love it. What they do here is outstanding. We really feel so unbelievably grateful to get this treatment at GOSH.”
“Lucas has been through so much. Even though he had been losing his sight for a year, he just got on with it. He never gave us any bother and was always happy. He is such a wee trooper and I’m so proud of him. He is a true little hero. And he has done a lot for me. Initially I was anxious but seeing him so unafraid and able to just get on with surgery as such a young age, has changed all that.”