A brave little girl who had her eye removed at just five months old because of rare retinoblastoma, after her parents became worried by a white glow on a flash photo, has celebrated her first birthday cancer-free.
When Dela-Rose Denham, of Dover, Kent, England, was born, dental nurse Shelby Simkins and landscaper Ryan Denham, both 26, noticed a squint in their daughter's left eye.
But when Shelby mentioned the flash photo snapped of the baby at three months, at a GP appointment in September 2019, where Dela was being examined for a viral infection, she was advised to take her to an optician.
Referred on again to an ophthalmologist, or eye surgeon, at Margate's Queen Elizabeth The Queen Mother Hospital, Dela then had further tests at Dover's Buckland Hospital, where retinoblastoma – cancer of the retina caused by a faulty gene, affecting under fives and diagnosed in around 45 children a year, according to the NHS – was diagnosed.
Recalling her first appointment in Margate, Shelby said:
“The ophthalmologist was asking Dela to follow toys around and using a light in her left eye. Her eye was not fixing on anything and she didn't like the light being shone in it."
“But it was when I mentioned the flash photograph, with the white glow in her left eye, that the ophthalmologist looked worried."
She continued:
“I'd taken it after seeing Dela lying facing me on my knees looking at me. She'd just had her milk and it was all over her face, so I wanted a picture for the memory."
“I took it on my phone and didn't realize the flash was on, but you could see her right eye was red, while the left one had this white glow in it."
“I thought at first it was just the flash and the funny angle I'd taken the picture at, but I was also concerned at the time about her squint and had been reading up about it."
Shelby recalled:
“I read that the optic nerve does not develop until later in babies so thought it could have been that."
But, further tests at Buckland Hospital confirmed that little Dela, by then just five months old, had retinoblastoma.
When they were given the diagnosis, Shelby recalled hearing her partner cry, saying:
“The lovely consultant was going through everything that needed to happen, but we just felt numb. There were a lot of tears that day."
“Even though I thought I'd prepared myself for the worst news, I hadn't. We just sat outside the hospital in total shock," Shelby added.
The next step was a further examination at The Royal London Hospital a week later in September, where, under general anesthetic, surgeons checked the tumor, which was classed as group E, meaning it was very large, and there was little chance the eye could be saved.
Shelby explained:
“We were given the option of removing her left eye or chemotherapy and cryotherapy treatment, which would have been so much to put her through and would not have saved her vision."
She continued:
“We knew we had to go ahead with having her eye removed to stop the spread of the cancer. We wanted it gone. It was such a big and hard decision to make but we knew it was for the best."
“We know she will not know any different and Dela was so good throughout it all. It didn't faze her, except for when she went into theatre and had to have a mask put on her face."
“The staff were also amazing, they were so good with her throughout the process."
After a two-hour operation on October 30, 2019, to remove her left eye and fit her with a temporary false eye, Dela was allowed home the following day, after which it took a week for the swelling to go down.
Once her eye was removed, medics took blood samples to see if any of the cancerous cells had spread further and to establish if the retinoblastoma was genetic and may affect her right eye in the future, which thankfully it was not.
In February, she was fitted with a molded eye at London's Moorfields Eye Hospital, which is the same shape as her socket and had been painted the same color as her right eye.
“Because of [the pandemic], they actually had to send the eye in the post, so that was a bit strange!" Shelby said.
“But it looks so good that if you didn't know she had had cancer, you would not be able to tell it was an artificial eye."
“When our family saw her afterwards they could not believe how amazing it looked."
Shelby said:
“We have to take it out once a week to clean it with soap and water, then pop it back in, which she doesn't particularly like, but she is getting used to it."
Dela still needs check-ups every four months, but her adoring parents are just delighted that they were able to celebrate her first birthday on Friday's May Bank Holiday knowing their little girl was cancer-free.
“We couldn't really do much because of [the pandemic], but I made her a little cake and decorated the house. We celebrated just the three of us," said Shelby.
“Both sets of grandparents were so upset they could not be there in person, but they dropped gifts off at the door and we were able to FaceTime friends and family."
“It was very emotional thinking about all we've been through over the last year, but she's such a happy little girl and I'm sure she will cope with whatever life has to throw at her."
“It was like we were thrown into a hurricane but all we cared about was making sure she got better."
Now, in conjunction with the charity Childhood Eye Cancer Trust, as part of World Retinoblastoma Awareness Week, which runs until May 16, Shelby and Ryan are encouraging parents to seek medical help if they are worried their child has any symptoms.
“I know people are worried about visiting the doctor at the moment, but if you are worried about either a squint or a white glow in your child's eye, please go to your doctor," said Shelby.
“Do not worry that you are bothering them. I was worried I was overreacting because I was a new mum, but my story shows that you can never be too careful."
Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust is also keen for parents to be aware of any tell-tale symptoms.
He said:
“[The pandemic] is deterring many people from seeking much-needed medical advice, and we are concerned about the delays this may cause in getting undiagnosed children the urgent treatment they may need."
“The current crisis means that, now more than ever, we need to raise awareness of eye cancer symptoms – the most common being a white glow in the eye and a squint."
“GP surgeries are still 'open for business.' They are available for consultations online, over the phone or in person if required. Cancer doesn't stop for a pandemic. We urge parents if they have any concerns at all, not to delay seeking medical help in order to possibly help save their child's sight, eyes and even life."
For more information visit chect.org.uk.
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