Bertie Busby was like any other 11-year-old, but when he was suddenly left blind in one of his eyes, he was given a shocking diagnosis and underwent a gruelling 13-hour operation
Little Bertie was a happy and healthy lad who loved football, but one day he completely lost sight in his right eye completely out of the blue.
The bubbly boy, who was 10 at the time, had been wearing glasses for six years, so went to the opticians for an eye test in January to check what might be wrong.
His mum, Cara Busby, 40, from Oxford, told the Mirror: “The opticians took photos of the back of his eye and did eye tests, and said it all looked healthy. They said it may just be something that’s temporary and it will come back.”
They were told to wait, but Bertie was still left unable to see. They returned to the opticians in July, and that time, they were told that it was “strange” that their son still didn’t have any vision in one eye, so he was referred to an eye hospital for multiple and extensive tests.
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“After a while, they said they were going to leave it for a couple of months as they thought it might come back and seemed like it was getting better. This frustrated Bertie, as he knew he couldn’t see,” Cara said.
“We went home and I left it for a few days, and I thought I’m not happy, and it was kind of like a mother’s instinct, I knew something wasn’t right.” Cara called the eye hospital to explain she wanted Bertie to be seen again, and within a few days, they saw a pediatric doctor.
At the end of July, almost six months after he first lost his eyesight, Bertie, who turned 11 in February and has three brothers, 10, 14 and 19, underwent an MRI scan. Just a few days later, they were hit with the earthshattering news that Bertie had a very large and rare tumour on the right side of his head.
His mum shared: “I was devastated, and because he’s so small, just to have that large thing growing in his head. It could have been there for years and years, and they think that maybe he didn’t need glasses, and the tumour has been there since then – a slow-growing tumour.
“So when he had his glasses fitted, six years ago, it could have been there all that time. Then we’re second-guessing ourselves, when he was playing football and headed the ball, did it get worse?
“Or when he’s rolling around on the floor when he was younger, or falling over at school, things like that just go through your head and you think, could we have picked this up sooner?”
Cara added: “We would never have known if it wasn’t for his eye. He was having no other symptoms, and this is what we found really scary. The eyesight is a really big thing, but we’d never have ever imagined that it would have been this tumour. It didn’t even cross our minds.
“After the diagnosis, there was quite a lot of panic, as it was really rare. Our pediatric consultant said he’s only ever seen around three of these cases, so he said we need the adult team to join to do the operation.”
Bertie had a biopsy taken and spent time in hospital before he underwent an operation to remove the tumour on 22 September. Thankfully, they were told that Bertie’s tumour was non-cancerous (benign), known as a schwannoma tumour.
His mum said: “The surgery took 13 hours to do, so it was very long. The tumour was very much stuck to his skull, that’s why it took so long – it had to be taken very carefully off it. They had to do a whole head craniotomy.
“They haven’t removed it all, and there is still some in there, but they described it as being quite at the back of his teeth area because it was such a large tumour, it kind of went from the top all the way down.”
After the operation, Bertie spent two days on a ventilator and remained in hospital before being able to go home six days later. Despite the operation to remove part of the tumour, Bertie heartbreakingly still can’t see out of his right eye.
“The tumour was pushing on the optic nerve, and they thought that when they removed it, there might be a chance that his eyesight would come back. But at the moment, it hasn’t, and they don’t think it will,” Cara explained.
In addition to his eyesight, Cara said her son also had a skin graft taken from his leg, “because they needed the muscle to go into his head, so his head and leg hurt.”
She added: “He also has numbness still on his head and face. He has a burning sensation above his lip, and he struggles to sleep. It’s a long recovery, and it’s been really hard at home.
“Bertie does get very frustrated and tries to sleep, but he can’t sleep, so we’re sitting in his room for hours at night trying to get him to sleep. But he’s still a kid, so he has that happy side to him.”
Bertie will have 15 years of follow-up appointments and scans to monitor his tumour. He will also undergo genetic testing, as Cara says that they have some relatives who have had brain tumours in the past, so it could be hereditary.
The mum added: “I’m just glad that I pushed for answers, otherwise, it’d still be growing.”
In a warning to others, she shared: “Just trust your gut instinct. Trust what you think, and push for what you want.
“It’s just crazy that as an 11-year-old boy, apart from the blindness, we would not have known anything different. He was exactly like his brothers, or anyone else to look at. It didn’t grow on the outside, and he wasn’t poorly in himself.”
The family set up a GoFundMe page to support Bertie during this difficult time. You can visit his page here.