Retinoblastoma is the most common eye cancer of childhood, early detection important for treatment
When baby Bennett’s image beamed into his mom’s night-monitor, one of his eyes looked like a black pool, and the other like a light.
At first, his mom did quick internet research and thought maybe the camera lens was dirty. But when his grandma noticed his eye seemed cloudy in certain light, an internet search made his mom’s heart sink. She told Benny’s pediatrician what she saw. It likely saved his life.
Benny was diagnosed with retinoblastoma, or cancer of the retina, in the same eye that looked like a black pool in the monitor.
Retinoblastoma is the most common eye cancer of childhood. Nationally, about 300 cases are diagnosed every year. Typically, patients are diagnosed before their fifth birthday, but most are diagnosed under the age of 2.
Physicians believe Benny’s story can help other parents detect retinoblastoma before it has a chance to spread and become life threatening.
“Not all childhood cancers benefit from early detection, but for retinoblastoma early detection really matters,” said Matthew Dietz, DO, pediatric oncologist at Intermountain Primary Children’s Hospital and University of Utah Health.
“Parents need to take notice of photos, videos, and other images of their children where one eye glows and the other doesn’t,” Dr. Dietz added. “This is becoming harder with advancements in mobile phone cameras that eliminate ‘red eye,’ but it is still possible. If parents see something, please tell your care provider right away.”
Dr. Dietz urges pediatricians to pay close attention when parents raise such concerns, and know that Primary Children’s has a team of experts specializing in treating cancers of the eye and the technology to save their vision and prevent the spread of cancer when detected early.
Benny’s cancer was caught early enough for doctors at Intermountain Primary Children’s Hospital to use an innovative, minimally invasive treatment.
Rather than infusing Benny’s body with chemotherapy, doctors were able to place a microcatheter, less than 1 mm, or the width of a piece of string, into an artery in Benny’s leg and up to the vessels behind his eye. There, they injected chemotherapy directly into tumor. The procedure prevented more invasive surgery and treatments, and saved Benny’s eye.
But that was just part of Benny’s care journey.
Geneticists seeking to identify the cause of Benny’s cancer discovered the baby was missing an entire retinoblastoma 1 gene, which is not typically seen in these patients. More extensive genetic sequencing found Benny is missing part of chromosome 13, which also is rare, and can lead to other medical problems.
Those genetic discoveries, made possible through the Huntsman Family Cancer Assessment Clinic and Primary Children’s Center for Personalized Medicine, allowed caregivers to tailor Benny’s care plan to include the interventions and therapies he needs to develop and thrive.
Benny’s mom hopes that her experience can help other parents.
“Yes, it was caught early. However, looking back now and knowing what I am looking for, I can see the ‘glow’ (in Benny’s eye) as early as 3 months old,” she said. “I had never heard of retinoblastoma before, and if this story somehow comes up when the next worried parent ‘Googles’ about their kid, then me missing it for three months was worth something to someone else.”
Benny is now a cheerful 18-month-old who is adored by his Primary Children’s care team. His mom says she’s grateful for their expert care, delivered with genuine kindness and love.
“Benny is incredibly lucky to have the team that he does, and I know they won’t toot their own horns,” his mother said, paying special thanks to Dr. Dietz, Dr. Eric Hansen, and Dr. Peter Feola of University of Utah Health and Intermountain Primary Children’s Hospital.
“From this experience, Benny has gained a team, friends, and family,” she said. “We have nurses that we are extremely bonded with who love Benny immensely. When Benny walks into the hospital, he is recognized and gushed over … and being around the people who love him makes it so much easier.”
For more information, visit primarychildrens.org.
MEDIA NOTE: images and video available upon request.
About Intermountain Health
Headquartered in Utah with locations in seven states and additional operations across the western U.S., Intermountain Health is a nonprofit system of 33 hospitals, 385 clinics, medical groups with some 3,900 employed physicians and advanced care providers, a health plans division called Select Health with more than one million members, and other health services. Helping people live the healthiest lives possible, Intermountain is committed to improving community health and is widely recognized as a leader in transforming healthcare by using evidence-based best practices to consistently deliver high-quality outcomes at sustainable costs. For more information or updates, see https://intermountainhealthcare.org/news.