Health visitor told mum her baby had eczema. Then she had her eye removed

When Katherine O’Neill noticed her 12 week old daughter’s eye was red, medics suggested treating her for eczema.

But at six months old, baby Amelia was diagnosed with retinoblastoma – a rare eye cancer.

After six rounds of chemotherapy, she had surgery to remove her eye.

Now, after going through so much at such a young age, her mum described Amelia as a ‘superstar’.

Katherine, 42, noticed that Amelia, who is a twin sister to Jake, had been rubbing her eye ever since she was born in September 2020.

Katherine, a full-time mum, from Winsford, said: ‘She had passed her newborn sight check and I was advised the redness could be eczema.

‘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.

‘As Amelia was a bit premature, a twin and her birthweight had dropped, I’d had quite a lot of contact with the health visitors and had kept mentioning it.

‘I was then told to mention it at the 12-week check.’

However, Katherine wanted to be sure that a GP looked at her daughter’s eye, and so contacted the doctor.

‘The rubbing was getting worse,’ she explained.

‘The GP 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 [at the 12-week check].

‘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.’

But in March 2021 when Amelia was six months old, Amelia’s grandma noticed something wasn’t right with her 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.’

It was then that Katherine was warned her daughter’s eye problem might be more sinister.

She said: ‘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 said she was ‘devastated’ when Amelia was diagnosed.

‘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,’ she said.

‘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 had six rounds of chemotherapy between March and August 2021.

Katherine said: ‘I slept in the bed next to her, she was hooked up with wires, and 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.’

The tumour shrunk but the cancer started to grow again which meant Amelia needed four chemotherapy injections into her eye.

‘I took the decision there and then to have Amelia’s eye removed,’ she said.

‘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. Now, Amelia, who is almost three, has a prosthetic eye and is doing ‘fantastic’.

Katherine said: ‘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 The Childhood Eye Cancer Trust(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.”’

The 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. 

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