In family photos, have you ever noticed a golden glow in your child’s eye? California mom Megan Webber saw just that in shots of her 5-year-old son, Benjamin. And, based on what she discovered, she’s sharing her family’s story – in a campaign called Know the Glow.
An innocent discovery
When Webber downloaded family photos off her digital camera, she found the usual problems that need touching up – some were too dark, some a little grainy, and a few needed a little red-eye removal. But some shots of Benjamin showed a golden glow in his left eye.
“Benjamin has always had a freckle in his left eye,” Webber says, “so I thought the flash was just a difference due to the coloring of his eye and ignored it – I even did red-eye correction to remove it from photos.”
But when her sister noticed that same glow in some family vacation pictures she had taken, she gave Megan a concerned call.
“She said it was probably nothing,” recalls Webber, “But she had seen on a television show that this could be a sign of a tumor in the eye and recommended I have him seen.”
Surprising, serious news
Benjamin’s pediatrician didn’t find anything, but he sent them to a specialist who urged them to come in right away. They were stunned to learn Benjamin was legally blind in his left eye.
“He’d never bumped into walls or rubbed his eyes – he’d even just passed the paddle eye test in the doctor’s office,” Webber says. “His left eye could not see a letter ‘E’ the size of a full computer screen eight feet away.”
Scans of his eye showed a white mass, which had been causing the reflection in the photograph. After testing and a tense few days, they discovered that Benjamin had Coats’ disease, a life-long disease that can damage the eye to the point where eye removal is necessary.
Facts about ‘The Glow’
One child in 80 is at risk of getting “The Glow.” And, when it comes to Coats’ disease and retinoblastoma (another disorder it often may indicate), 80 percent of cases are initially diagnosed by a parent via a photograph, according to the campaign.
“The Glow” is an indicator of 15 eye diseases and cancers. In some cases, it can lead to the removal of the eye, blindness and, in extreme cases, death. Abnormalities perceived through the red reflex test can indicate several types of diseases, such as:
- Coats’ disease (a rare eye disorder involving abnormal development of blood vessels in the retina)
- Congenital cataract
- Norrie’s disease
- Refractive error
- Retinal detachment
- Retinal dysplasia
- Retinopathy of prematurity (ROP)
- Retinoblastoma (a malignant early childhood cancer that arises in immature retinal cells and can start growing from birth to 3 years)
If you believe you have seen a glow, you should obtain a referral immediately to a pediatric ophthalmologist for diagnosis and treatment.
Treatment in time
Fortunately, 80 percent of childhood blindness is preventable. And Benjamin’s problem was caught early enough for treatment.
“While Benjamin has had three eye surgeries, we were very lucky to have caught his disease in time,” says Webber. “Had it been more advanced, Ben could have immediately lost his eye.
“We are so grateful to Dr. Tom Lee and the doctors at The Vision Center at Children’s Hospital Los Angeles. Without the work that they do, so many families would not have access to the quality and caliber of care that is provided there.”
Benjamin is doing well – and is a happy, thriving first-grader. “He wears protective Nike shatterproof glasses, which the other kids think are pretty cool,” says Webber. “The glasses are primarily to keep his unaffected eye safe – for without that eye, he would be blind.”
A vision to help other kids
Webber says she doesn’t want any more parents to miss the signs of potentially life-threatening eye diseases.
“We are amazed that something so simple, just the glow in a photo, was all that was needed to spot this disease,” she says. “If there is a way, through our family’s experience, we are able to get the message out about ‘The Glow,’ we are anxious to do so. We’ve created a campaign to raise awareness.”
That campaign, Know the Glow, is combining the efforts of concerned individuals, corporations and physicians who are pioneers in the field of pediatric diseases of the eye.
“I can’t tell you how many kids come in with advanced eye diseases; it’s a tragedy,” says Dr. Tom Lee, director of the Retina Institute in The Vision Center at Children’s Hospital Los Angeles. “Parents don’t realize they are an important part of the diagnosis. They will see this sign before doctors will. Every child has had this screening process – all it takes is for parents to open up the photo album.”
KnowTheGlow.org has information on the diseases that can be indicated by “The glow.”
“Had I known about the glow earlier, Dr. Lee could have saved more of Ben’s vision,” Webber says. “Knowing what it felt like to possibly face a fatal outcome and knowing that I ignored such a huge red flag that was right there in front of me, I don’t want another parent to have to suffer through that – or another child to needlessly lose their sight or their eyes due to a lack of awareness of the glow!”
This post was originally published in 2012 and has been updated for 2016.