A brave girl who had her eye removed when she was just five months old due to rare retinoblastoma, after her parents worried about a white glow in a flash photo, celebrated her first birthday without cancer.
When Dela-Rose Denham, of Dover, Kent, was born, dental nurse Shelby Simkins and landscape gardener Ryan Denham, both 26, noticed a squint in their daughter’s left eye.
But when Shelby mentioned the baby’s flash photo at three months, during a doctor’s appointment in September 2019, where Dela was examined for a viral infection, she was advised to take her to an optician.
Referred again to an ophthalmologist or eye surgeon at Queen Elizabeth The Queen Mother Hospital in Margate, Dela then had further tests conducted at Dover’s Buckland Hospital, where retinoblastoma – retinoblastoma – causes cancer of the retina due to a defective gene under five and being diagnosed in about 45 children a year, according to the NHS, was diagnosed.
Shelby said of her first appointment at Margate: “The ophthalmologist asked Dela to follow toys and use a light in her left eye. Her eye didn’t fix on anything and she didn’t like the light shining in it.
“But when I mentioned the flash photo, with the white glow in her left eye, the ophthalmologist looked concerned.”
She continued, “I took it after seeing Dela lying on her knees looking at me. She had just had her milk all over her face, so I wanted a photo 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 a white glow.
“At first I thought it was just the flash and the funny angle I took the photo with, but I was also worried about her strabismus at the time and had read about it.”
Shelby recalled, “I read that the optic nerve does not develop in babies until later, so I thought it could be. “
But further tests at Buckland Hospital confirmed that little Dela, then just five months old, had retinoblastoma.
When they were diagnosed, Shelby recalled hearing her partner cry and saying, “The lovely consultant went through everything that needed to be done, but we were just numb. There were many tears that day. ‘
“Although I thought I had prepared myself for the worst news, I hadn’t. We were just in total shock outside the hospital,” Shelby added.
The next step was a further examination at the Royal London Hospital a week later in September, where surgeons checked the tumor under general anesthesia, which was classified as group E, meaning it was very large and there was little chance of the eye could be saved.
Shelby explained, “We had the option of having her left eye removed or chemotherapy and cryotherapy, which would have affected her so much and not save her eyesight.”
She continued, “We knew we had to continue removing her eye to stop the cancer from spreading. We wanted it to be gone. It was such a big and difficult decision to make, but we knew it was best.
“We know she won’t know otherwise and Dela was so good at everything. She didn’t care, except when she went to the theater and had to have a mask on her face.
“The staff were great too, they were so good with her throughout the process.”
After two hours of surgery on October 30, 2019, to remove her left eye and give her a temporary false eye, Dela was allowed to go home the next day, after which it took a week for the swelling to subside.
After her eye was removed, doctors took blood samples to see if any of the cancer cells had spread further and to determine whether the retinoblastoma was genetic and could affect her right eye in the future, which fortunately was not.
In February, she received a contoured eye at Moorfields Eye Hospital in London, which is the same shape as her eye socket and the same color as her right eye.
“Because of Covid-19, they actually had to send an eye to the mail, so that was a bit strange!” Shelby said.
“But it looks so good that if you didn’t know she had cancer, you couldn’t tell it was an artificial eye.
“When our family saw her after that, they couldn’t believe how great it looked.”
Shelby said, “We have to take it out once a week to clean it with soap and water, then put it back in, which she doesn’t like, but she gets used to it.”
Dela still has to be checked every four months, but her adoring parents are thrilled to have been able to celebrate her first birthday on the May holiday knowing their little girl was cancer-free.
“Because of Covid-19, we couldn’t do much, but I made a little cake for her and decorated the house. We were just celebrating the three of us,” Shelby said.
“Both groups of grandparents were so upset that they couldn’t be there in person, but they gave presents at the door and we were able to meet FaceTime friends and family.
“It was very emotional to think about everything we’ve been through in the past year, but she is such a happy girl and I am sure she will cope with everything life has to offer.
“It was like being thrown into a hurricane, but all we cared about was making sure she got better.”
Now, in partnership with the Childhood Eye Cancer Trust charity, as part of World Retinoblastoma Awareness Week, which runs through May 16, Shelby and Ryan encourage parents to seek medical attention if they are concerned that their child has symptoms.
“I know people are currently concerned about a visit to the doctor because of Covid-19, but if you are concerned about a squint or white glow in your child’s eye, see your doctor,” said Shelby.
“Don’t worry about bothering them. I was afraid I was overreacting because I was a new mom, but my story shows that you can never be too careful. ‘
Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust, also wants parents to be aware of telltale symptoms.
He said, “Covid-19 is preventing many people from seeking much-needed medical advice, and we are concerned about the delays it can cause to give undiagnosed children the urgent treatment they 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 eye.
GP practices are still ‘open to business’. They are available for online, telephone or personal consultation if needed. Cancer doesn’t stop for a pandemic. We urge parents, if they are concerned about anything, not to postpone medical attention to potentially save their child’s eyesight, eyes and even life.