I'm sharing polaroid photo of my baby boy so other parents don't have to face our devastating realityMay 4, 2022
LIKE all proud new parents, Tom and Annabel took countless photos of their new-born baby to show friends and family.
But it wasn’t until they properly looked at an old-style polaroid photo of their son that they finally knew something wasn’t right.
Elijah was born in November 2019, and those first few months all seemed to be well.
But the following summer, dad Tom Pughe-Morgan, 19, spotted an unusual white glow in his son’s right eye.
Bricklayer Tom, from Brighton, says: “It seemed odd, but it was only visible in photos taken on our phones, not in real life.
“We assumed that like red-eye, it was caused by a flash or something else, and nothing to worry about.
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“Looking back, alarm bells should’ve rung because we didn’t see that white glow in anyone else’s eyes, and it was only his right eye, but he seemed healthy and happy, so we just put it to the back of our minds.”
It was just before Christmas that mum Annabel Byrne, 19, happened upon a TikTok video of influencer Jarrett Stod removing his artificial eye, in which he explained that he’d had retinoblastoma, or eye cancer.
But the penny didn’t drop for the parents until the New Year, when Annabel found an old polaroid camera, bought some new film for it and took fresh photos of their son.
“It was only when I watched the first photo of him develop that I first properly ‘saw’ that white glow and thought something really wasn’t right,” she remembers.
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“Everyone else we took Polaroids of had dark pupils!”
The next day she took Elijah to the Sussex Eye Hospital.
“I was there with Elijah on my own because of Covid, and couldn’t help staring into his eyes, panicking,” she says.
“The doctor came to examine him and told me the news I’d feared – it was likely he had retinoblastoma."
Now expecting mums will be able to get a new non-invasive NHS test that detects the rare form of cancer.
The NHS predict the test – which involves giving a blood sample pre-birth – will identify around 50 cases of retinoblastoma each year in England, before the affected baby has been born.
When Annabel was told her son had the condition, she “went into a state of complete shock – my mind was choosing not to hear it, scenes from that TikTok video flashing back.
“Then some nurses arrived outside to take us to see a specialist, me hugging Elijah so hard, desperately trying to hold back the tears.”
When a specialist at Sussex Eye Hospital said that Elijah was going Great Ormond Street Hospital for Children (GOSH) that Annabel realised just how bad the situation was for her son.
“I remember the word 'cancer' and that's it,” she recalls now. “I just felt so numb and floppy and had to leave.
“My whole world stopped – I couldn't even process it.
“I rang Tom and said, ‘Elijah has cancer’ – he didn’t believe me at first but then immediately left work to come to the hospital.
“I was holding onto my 14-month-old boy who hadn't a clue, smiling away.
“I was his comfort and I needed to step up.
“It was by far the hardest moment I've had to deal with, and I had to keep our family together and strong.”
“The consultant assured me the survival rate was high, but we were very lucky to have noticed it early and brought him in – if we hadn’t it could’ve been a very different story.”
“We both felt so bad for not having done anything for the past six months, after Tom first noticed the white glow.
“But we were in the right place now, with the best possible care, and that was all that mattered.”
The parents are far from alone, according to new research from the Childhood Eye Cancer Trust, which found that only 19 percent of parents surveyed knew the symptoms of retinoblastoma.
Two days later, on January 6, the family went to Moorfields Eye Hospital where Elijah was officially diagnosed with retinoblastoma.
At GOSH Elijah underwent a MRI which found that his cancer hadn’t spread beyond his eyes, which was a huge relief for Tom and Annabel.
However, they were still faced with a heart-wrenching decision: should Elijah have chemotherapy, or have his eye removed?
It was an incredibly tough call.
“If Elijah had gone through chemotherapy there was a chance he would still need his eye removed, or the cancer spreading,” says Annabel.
“Tom and I looked at each other and we just knew that having his left eye removed was the right thing to do for Elijah.
“He still had one healthy eye, and the prospect of his cancer spreading wasn’t worth thinking about.”
On January 13, Elijah went in for his eye operation at the Royal London Hospital.
Annabel was distraught.
“I’d never been so scared when we went to collect him – I scooped him up and didn't want to let go,” she says.
“Tom and I are both very grateful to have each other to lean on, we were each other's rocks in the most horrible situation.”
With his artificial eye fitted, Annabel says their son “bounced back”.
“The day after the operation Elijah just wanted lots of cuddles – I was still breast-feeding him, which gave him real comfort,” she says.
“He never complained once and just got on with it, which was such a huge relief.
“We also checked on a Facebook group for retinoblastoma, and spoke to other parents who’d been through this, so really didn’t feel alone.
“That support from strangers, real parents who knew how we felt – it was a lifeline.”
A few weeks after the operation Elijah had his artificial eye replaced to match the colour of his other one – with technology embedded so it reacted to the optic nerves firing behind it, so it moved in sync with the other.
Regularly needing a new artificial eye as he grows, Annabel says they have a box at home of the five he has been through so far – which the toddler describes as his “old eyes”.
Signs and symptoms of retinoblastoma
These are the signs and symptoms to look for, according to Childhood Eye Cancer Trust (CHECT)
White eye or glow
You might see a white glow in the eye, a white pupil or white reflection in a photo where a flash has been used, or when your child is in artificial light or a darkish room. This may only be seen once but in some cases it’s present all the time.
A squint, where the eyes do not look in the same direction, can sometimes be a symptom of retinoblastoma.
Red, sore or swollen eye
Your child’s eye may become very red and inflamed for no obvious reason – and with no sign of infection. This symptom is usually accompanied by one or more of the other signs described here.
Change in iris colour
The iris – the coloured part of the eye – can change colour in one eye, sometimes only in one area.
No red eye
In a photo where one eye has “red eye” (which is normal), the other eye may look black. This can be a sign that something is not right.
Deterioration in sight
Your child’s vision may begin to deteriorate, or they may have had poor vision from birth.
You may notice that they don’t focus, fix and follow as well as other children of the same age.
Visit chect.org.uk to find out more.
Every six months Elijah goes for a check-up at the Royal London Hospital but was told he was cancer free on January 4, 2022 – a year on exactly from getting his diagnosis.
They marked it by ringing a bell.
“Tom and I were thrilled because it's such a lovely thing to do, especially as it was a year anniversary,” says Annabel.
“We helped him ring it and it was a lovely atmosphere.”
Today she says: “Elijah is the most amazing, funniest, bravest, cheekiest, gorgeous, polite little boy!
“He loves animals, being outside and horse riding.
“As he has one eye you just want to protect it, but I don't wrap him up in cotton wool.
“I want him to go out and be himself. I believe he can do anything a child with two eyes can do.”
Annabel wants other parents to always “trust your gut” if they’re concerned about a change in their child’s health.
“If you're worried, book a doctor’s appointment. It's a few hours out your day that could save your child's life.”
The Childhood Eye Cancer Trust (CHECT) are also urging parents and healthcare professionals to get to know the most common possible symptoms of eye cancer.
They say to look out for a white glow in the eye in a flash photo, or other certain lighting conditions, and a squint.
Patrick Tonks, 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, such as in Elijah’s case, a child has to have an eye removed as part of their treatment.”
He adds: “We are extremely grateful that in Elijah’s case, his symptoms were recognised, and A&E made an urgent referral so that he could undergo treatment.”
Elijah’s Great Great aunt, Ash, is shaving her hair to raise funds for CHECT.
“I'm so happy Ash chose to do this for CHECT as they've helped our family hugely – not only financially, but mentally, and offering help whenever it was needed,” says Annabel.
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“We also want to thank all the health professionals who helped with diagnosing and treating Elijah”.
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk
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