27 November 2025
When three-year-old Jessy began to hide her eyes away from light her mum, Lisa Morton, knew something was not right.
After seeing multiple healthcare professionals, the family managed to secure an appointment for Jessy’s eye to be seen at the hospital, but this would be months away. In the meantime, Jessy’s pupil was changing.
Lisa suspected it couldn’t wait and visited Linklater & Warren Optometrists, where an urgent referral was then made. OT learnt more.
What led you to take Jessy for an eye test? What symptoms had she been experiencing?
Lisa Morton (LM): I think it started in November 2023 – though I didn’t realise it then – when Jessy became really poorly, which is unlike her. I took her to the GP and she had a really bad chest infection. The GP commented that her eyes were a bit red, but we assumed it was because she was unwell. After a while everything cleared up, even the red eye, so I thought nothing of it.
A couple of weeks later, in mid-December, she started complaining about her eye. She was only three at the time and was cupping her hand over her eyes or holding her teddy bear like a baseball cap over her eyes.
There didn’t seem to be any reason for her eye to be sore – there wasn’t anything in it, and she hadn’t knocked it. My family has a history of eye problems so I took her up to urgent care and the doctor agreed something wasn’t quite right and they would make a referral, but whilst checking her over said that she had tonsilitis, which shocked us because she didn’t have any of the symptoms we would expect. We were sent home with antibiotics.
I later received a text that the appointment for Jessy’s eyes was booked for March, which was three months away. Over Christmas her pupil dilated and didn’t go back, and her iris started getting darker. I knew it wasn’t right so on the first day I could in the new year, I phoned the optician. I thought I would rather see someone who can tell me if I’m being irrational, or if they agreed with me, then I could ask the hospital for an appointment sooner than March.
What did the optometrist find, and how did they explain the next steps to you?
LM: The optometrist said that there was something not right. She told me: “I agree with you, this can’t wait until March. I’m going to make an urgent referral.”
The optometrist explained that the hospital would call me the same day and would want to see Jessy early the next week.
Can you describe how you felt during the referral?
LM: At that point, I thought: “At least I’m not being irrational.” The optometrist put my mind at rest because I knew in my gut that it wasn’t just an infection – it wasn’t normal. Her pupil was still dilated and her eye looked darker.
At the hospital, the doctor looked in Jessy’s eyes. I remember he then wheeled his chair so our knees were practically touching and looked me in my eyes and said: “This isn’t good, but you need to listen to what I say. I think this could be retinoblastoma – eye cancer.”
He said that it is treatable but that it needed to be dealt with as soon as possible. At that point I don’t think it really went in, I still thought – ‘but she just said that her eye hurt.’
The optometrist put my mind at rest because I knew in my gut that it wasn’t just an infection – it wasn’t normal
What further treatment did Jessy require and what has the outcome been?
LM: The Royal London Hospital phoned me. They started talking about Coats Disease. It now makes sense why everyone seemed a little bit confused, because they weren’t sure if it was Coats Disease or retinoblastoma.
Jessy had an ultrasound, which came back inconclusive, and then an MRI at Great Ormond Street Hospital, which was delayed by a week because she had chicken pox. On 31 January the hospital arranged a Zoom call with us to discuss the results.
They said: “We’re so sorry to tell you like this, but it is retinoblastoma. Jessy has a grade E tumour and we have no choice but to remove her eye next week.”
It was so surreal. Jessy didn’t have the white glow – we went back through photos on our phones just to see if we missed anything. She didn’t have a squint or the signs you might expect for retinoblastoma.
That week was the slowest week of our lives. We weren’t looking at it as they were taking her eye, we were looking at it as they were curing her of cancer. She then needed four rounds of preventative chemotherapy.
Jessy has the faulty Rb1 gene. Normally these are diagnosed as babies with several tumours affecting both eyes, but Jessy only ever had one tumour in one eye.
Have your views on the importance of sight tests and eye care changed as a result of this experience?
LM: The visit to the optometrist convinced me that I had made the right choice. My husband said that decision saved her – because we could have been waiting for those three months for the appointment at the hospital and the picture could have been completely different. It would have been life-threatening. Whilst it wasn’t a nice outcome, I know it was the right choice. I would say to people now – don't just go to urgent care, go to an optician.
How has the experience affected Jessy, and yourself?
LM: We’re forever realising that things can change in a second. The one thing you should look after is your eyes. Jessy has [now only] got one, so we’re going to do everything we can to make sure that one eye is protected.
We’ve had to learn what monocular vision is. I’ve learned that she might get eye strain a bit more quickly and might lose concentration sooner. She has no peripheral vision on that side, and depth perception can be an issue – which you don’t even realise. Don’t take your sight for granted.
The thing with retinoblastoma is, the year Jessy was diagnosed, there were only 47 children diagnosed. It is so incredibly rare that everything they think they know about it changes all the time.
We were told that Jessy had the Rb1 gene, and what she should have presented like, but she didn’t. The iris and the pupil changes were late-stage. I would tell people – even if the symptoms don’t match what is written online – just go to the optometrist. Point out that there are always those cases that are not the norm, especially when you are talking about rare cancers.
It is the importance of not assuming that, because something doesn’t meet the norm, it’s never going to be there. When it comes to eyes – things are not always straightfoward.
Jessy has adapted amazingly. She doesn’t know any difference, she just gets on with things and is a typical kid. She thinks everyone has a special eye.
I was aware immediately this had a potential neurological cause
What is your role in practice?
Lesley Stuart (LS), optometrist and orthoptist: I am dual-qualified as an optometrist and orthoptist. I provide general overall optometry services including myopia management, private orthoptic clinics, and I provide a minor eye conditions service (MECS) as well as being a named clinician within the Easy Eye Care pathway.
What did you identify during the sight test and what was your reaction?
LS: Jessy and her mum presented to my MECS clinic. There was a dilated pupil in one eye with photophobia, which her mum had been aware of over the previous weeks and had previously presented to other healthcare professionals for. There was no strabismus present or leukocoria. I was aware immediately this had a potential neurological cause.
How did you approach explaining what you had identified or suspected?
LS: I explained that this required immediate further investigation by a paediatric eye doctor, due to its very recent onset, and would require further medical investigations to determine the cause. I was aware at that time that the cause could potentially be neurological in nature and therefore required immediate medical attention from the eye care team.
What were the next steps that you took and what was the significance in this case?
LS: I made a same day emergency referral to the local eye emergency department, requesting to be seen by a paediatric ophthalmologist. I referred to Queen Mary’s Hospital in Sidcup, which is part of King’s College Hospitals.
When did you hear about the results of your referral and how have you been involved since?
LS: Jessy’s grandmother came into the practice but I was not in clinic that day, so she asked the reception staff to pass on her thanks as there had been a diagnosis of retinoblastoma and Jessy had required immediate surgical intervention. I have since seen other members of the family and mum has been keeping me up to date with Jessy’s progress.
What tips would you share to other practitioners when making a referral?
LS: Be aware of serious neurological signs that require urgent attention and subsequent emergency referral and investigations, even if you are unable to perform a full eye exam. Jessy’s mum was a very good historian and very clear with her concerns, despite having been seen by other medical professionals. Always listen to parents as they often know best.
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