Toddler’s eye cancer was mistaken for eczema - here’s how she is doing now

A twin was diagnosed with eye cancer after it was originally mistaken for eczema.

Katherine O’Neill, 42, noticed her newborn Amelia, now two, had been rubbing her left eye since being born in September 2020. Amelia had passed her sight check and Katherine was advised that the redness could be eczema but the problem continued and Amelia was getting distressed.

In March 2021 when Amelia was 6 months old, Amelia’s Grandma noticed something wasn’t right with Amelia’s eye during dinner. Katherine called the GP the next morning and had an appointment the same day where she was told Amelia could have a cataract or retinoblastoma - a rare eye cancer.

Amelia was then referred under the two-week cancer rule but devastated mum, Katherine couldn’t bare to wait two weeks and contacted her local optician - who then referred Amelia to Hospital. A week later, the family were seen in Manchester Children’s Hospital where Amelia was diagnosed with a Grade E tumour in her left eye.

Amelia had six rounds of chemotherapy between March and August 2021 which weren’t successful. Amelia had her eye removed on December 8, 2021 in a three-hour operation.

Katherine, a full-time mum, from Winsford, Cheshire, said: “I was first advised by the health visitor to put breast milk on it. There was a noticeable redness on the eyelid, but the eye appeared normal – she had passed her newborn sight check and I was advised the redness could be eczema. When Amelia was diagnosed, I was devasted. I didn’t call my family as I couldn’t break down yet as I had a half an hour walk home with the babies.

“On the walk, two ladies stopped me to make a fuss of the babies and I remember just not being there – It felt so surreal and I couldn’t believe what I had been told. Amelia is doing fantastically now. You really wouldn’t notice that she only has sight in one eye – she has just as much confidence as Jake, if not more.”

After being born in September 2020, Katherine noticed that Amelia was frequently rubbing her eye but was assured it was eczema.

Katherine said: “As Amelia was a bit premature, a twin and their birthweight had dropped, I’d had quite a lot of contact with the Health Visitors and had kept mentioning it. I was told to mention it at the 12-week check. As I wasn’t sure that the 12-week check was with a GP, I had called the GP the day before as the rubbing was getting worse. They requested I send some pictures and thought that the redness could be a birthmark.

“I didn’t think that this was the case, but I was told that we’d be seeing the GP the next day. It was a different GP to the one who had suggested it might be a birthmark, but she concurred and said she wasn’t concerned.”

The Childhood Eye Cancer Trust (CHECT) says that typical signs of retinoblastoma include a white glow which may only appear in certain lights or a squint, as well as a change in the appearance of the eye or a swollen eye, although often only one sign or symptom is present. Another symptom can be a sore or red eye, without an infection.

Katherine said the problem continued and Amelia would constantly be rubbing her eye.

In March 2021 when Amelia was 6 months old, Amelia’s Grandma noticed something wasn’t right with Amelia’s eye during dinner.

Katherine said: “Amelia was in her highchair when my mum said, ‘What’s wrong with Amelia’s eye?’. I hadn’t noticed anything about the actual eye before, but under the spotlights in the kitchen, you could see that it was protruding and looked kind of dead. We called the GP the next morning and they fitted us in that day.

“The GP examined the eye and shined a light into it. She quickly told me that it could either be a cataract, or a very rare cancer called retinoblastoma, but she thought it was the latter. She gave me a leaflet and said she was referring us under the two week cancer rule.

“I couldn’t bear the thought of waiting 2 weeks to be seen so I contacted my local independent optician. He advised that I go and see him and if he was concerned, he’d refer us straight into my local hospital and we could expedite things that way which is what happened.”

Katherine took Amelia to Leighton Hospital, Crew, but the doctors were unable to confirm the diagnosis.

Amelia was referred to Manchester Children’s Hospital where they confirmed she had a retinoblastoma.

Katherine said: “The first initial suggestion was to remove the eye rather than trying to shrink the tumour, but a decision would be made after the team meeting with the oncologist. Later that day, we were brought to a meeting and the team had agreed that they would try with chemotherapy to see if they could save the eye.”

Katherine added, “One week after diagnosis, Amelia was admitted to Manchester Children’s Hospital to have her line fitted.

“The line was fitted in surgery in the afternoon and her first round of JOE Chemotherapy was administered to her through the night. I slept in the bed next to her, she was hooked up with wires, it was awful to watch knowing how poorly it would make her. The next morning, she looked very pale and as soon as she woke up, she vomited. It made her very sleepy and sick.”

Amelia had six rounds of chemotherapy at Manchester Children’s Hospital between March and August 2021. The tumour shrunk but the cancer started to grow again which meant Amelia needed four chemo injections into her eye.

Katherine said: “She had four chemo injections but there were new areas of growth, even the consultants were surprised at how aggressive the cancer was. I took the decision there and then to have Amelia’s eye removed.

“She had been through enough and by then, we realised that her eye didn’t look like her eye anymore and as she couldn’t see out of it, at least if she had a prosthetic eye, the cancer would be removed.”

Amelia’s left eye was removed on December 8, 2021 after a three-hour operation. Amelia is now fitted with a prosthetic eye and is doing “fantastic”.

Katherine said: “She still has to have check-ups in Birmingham every three months. She is a superstar. She has such a wonderful, feisty and kind personality. She is always keen to try new things and make new friends. She loves Peppa Pig, baking with Grandma, scooting to the park and helping in the kitchen.”

Richard Ashton, Chief Executive of CHECT said: “Retinoblastoma is rare, with around one baby or young child being diagnosed in the UK each week. Symptoms can be quite subtle, and children often seem well in themselves which can make it hard to diagnose. In just under half of all cases, a child must have an eye removed as part of their treatment.”