A toddler faces a three-year wait on the NHS to have his eye removed after a fall at nursery – despite being in so much pain he won’t play with toys or get out of bed.
Gemma Lithgow noticed her son Levi Lithgow had become sensitive to light after suffering a minor bump on the head while learning to walk at nursery on 21 December 2022. A month after the fall, the mum-of-one took him to their local opticians who referred them to Ayr Hospital and eventually Levi was sent to the Royal Hospital for Children in Glasgow.
Doctors eventually put Levi under anaesthetic in May 2023 and found his lens had become dislocated and he had been blind in his right eye since his tumble at nursery. Fluid had been building up behind Levi’s eye during this time, leaving him in an immense amount of pain and he began to have monthly surgeries to have the eye drained and laser treatment to reduce pressure.
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Levi Lithgow, 3, after his lens had become dislocated -Credit:Kennedy News and Media
His 22-year-old mum said Levi finally had the lens removed in December 2023 and doctors had been planning on putting a fake lens into his eye. But on 2 August of this year, doctors found bleeding had corroded Levi’s eye, meaning nothing could be saved and he would need the eye removed.
Gemma was horrified to discover that the NHS waiting list for the life-changing enucleation op Levi needs is three years. So the family resorted to launching a GoFundMe page to raise funds for private surgery so he can have the op sooner.
And as Christmas approaches, his parents fret that poor Levi is in so much pain that he won’t even be well enough to play with his presents.
Gemma, from Ayr in Scotland, said: “It’s gotten to the point this month and last month where his pain is just unmanageable. He’s sleeping all the time. He doesn’t want to get out of bed, he doesn’t want to eat, he doesn’t want to go out and play outside or anything really.
“He can’t really communicate how the pain feels but he was clawing at his eyes. He would be screaming, my eyes, my eyes! He would end up just sleeping for a full 24 hours which was normal at that point.
Levi Lithgow, 3, after his lens had become dislocated -Credit:Kennedy News and Media
“He would sometimes here and there wake up [and] the terror screams that were coming out of him – it was terrifying. I was really hard on myself, I think I blamed myself a lot. Maybe I should have just kept him home all the time. You blame yourself for a lot when you’re a mum.
“He was learning to walk. Kids fall over when they’re trying to learn to walk. It was almost a freak accident. There were no marks. There was no swelling on his head or anything like that which would indicate that it was actually more than a small bump to the head, that was a big fall.
“We trust that nursery with everything. He’s still in that nursery they’re amazing. Honestly he was the happiest boy ever and I’ve watched that wee light that he’s got in him slowly diminish and eventually go out completely.
“He’s not as happy as he used to be, he’s not outgoing. It’s almost like watching somebody go through depression. He doesn’t want to get out of his bed, he doesn’t want to do anything.
“Even coming up to Christmas, me and my partner know that even if we do get him presents, he won’t want them. He doesn’t want to play with toys, which for a three -year-old is not normal at all.
“We’re just hoping and praying that it will get sorted soon and hopefully it’ll get done before his birthday next year.”
Levi Lithgow, 3, with Gemma Lithgow, 22, in hospital -Credit:Kennedy News and Media
The school transport driver said Levi has become so sensitive to light that she had to have her car windows tinted and black out blinds installed in his bedroom.
Gemma said: “That was our first step, blacking out the back car windows. We’d put towels over the windows and shut the window onto it so it would hold it up and then later on I got my windows tinted so there wasn’t as much light coming in.
“We’ve had to put up black out blinds in his bedroom and they’re down constantly. We wouldn’t be able to go out for dinners and stuff like that because normally the lights were too bright.
“His nursery, they would accommodate him, so they would turn their lights down as much as they could so that he wasn’t in pain when he was at nursery.
“During the summer you just kind of avoid going outside as much as you can and if he is outside he’s having to wear his hat and his glasses. I don’t go out anymore, I’m constantly in the house. It’s normal for us now to not bother going out.
“We couldn’t give him any pain medications. It was kind of just your bog standard Calpol and Nurofen but at that point realistically there’s only so much that can do. It obviously didn’t touch his pain. We would never expect it to but it was the only thing we could do at that point.”
Levi Lithgow, 3, with his dad Robert Lithgow, 24, and his mum Gemma Lithgow, 22 -Credit:Kennedy News/Whitney Graham Photography
The surgery to remove Levi’s eye and give him an ocular implant is expected to cost more than £10,000. Gemma said that because of all the pain now three-year-old Levi is in, he is behind developmentally compared to other children his age.
Gemma said: “Unfortunately, the NHS waiting list for the procedure is three years. We only got told that he would be put on the waiting list a month after we got told that he would have to lose his eye.
“We did go to our NHS hospital to speak to them and they were like that’s normal, there’s nothing really we can do until the surgery is booked and stuff. I spoke to a few of my friends and a few of my family and they were like well he obviously needs it soon so you may as well try and go private.
“He’s had eight surgeries all together. He’s been through so many surgeries that he’s a pro at it now. We knew from that point there was no way he would make it to three years without having the surgery whether it be through the NHS or whether it be private. It definitely wasn’t a decision I thought I’d ever have to make.
“We did try to push our points with the NHS. But nothing we ever said was enough for them to expedite him on the waiting list. He’s still in a private nursery and they do a thing where they hold kids back for a year if they’re not ready for school. He’s not school ready yet at all. He’s still in nappies, he can’t communicate with us so he’s not school ready just now anyway.
Levi Lithgow, 3, with Gemma Lithgow, 22, in hospital -Credit:Kennedy News and Media
“I feel almost betrayed by the NHS, I feel like they’re meant to be there to help kids. But I understand they’re obviously busy and there’s a lot of sick kids out there, not just Levi.
“It’s definitely very upsetting that he’s not really had the care that he really needed. And obviously you can’t really make exceptions for everyone. It’s been tough. It’s going to completely change his life. I can’t remember a time where he wasn’t in pain so to think that is round the corner is crazy.”
A spokesperson for NHS Greater Glasgow and Clyde said: “While we cannot comment on individual patient cases due to confidentiality, we would like to apologise to Levi and his family. As is the case throughout the country, our services are facing considerable pressures and all our staff are working hard to address these challenges.
“We are sorry to any patient who has waited longer than expected, and for any distress this has caused. We would encourage the family of the patient to get in contact with us if they have any concerns or questions around the care provided and would be happy to provide any additional support.”
To donate to Levi’s GoFundMe, follow the link here: https://www.gofundme.com/f/levis-enucleation-surgery