Four-year-old Lela Moody is a little ray of sunshine—singing, playing with her stuffed owl and spreading joy in her wake. Ironically, the little girl may be alive today because a ray of light hit her eye in just the right spot at just the right time.
In April of 2012, Mandy Moody noticed a whitish reflection in her baby’s eye. That tiny glare offered the only clue that 6-week-old Lela had an advanced case of the eye cancer retinoblastoma. At St. Jude Children’s Research Hospital, surgeons removed her left eye but managed to preserve vision in the right eye.
Lela is fortunate, because her cancer was found before it spread further. But thousands of children in developing countries lose their lives each year because of late diagnosis and poor access to medical care.
As St. Jude extends its research and clinical care to the farthest reaches of the globe, a new clinical trial is harnessing the power of the mobile phone to provide early diagnosis—and to save the lives of children like Lela.
Early detection is key
Retinoblastoma is a rare cancer of the retina, the thin membrane at the back of the eye. If untreated, the cancer can spread to the optic nerve, brain, bones and bone marrow. The disease is usually discovered by parents who notice an abnormal glare in flash photos of their children. In a healthy child, the center of the eye may appear red in response to a bright light, but in retinoblastoma, the pupil may look white. That glow is known as leukocoria.
Carlos Rodriguez-Galindo, MD, chair of St. Jude Global Pediatric Medicine, says every child should have a light-reflex exam with an ophthalmoscope at every routine well-child visit at the pediatrician’s office.
“If this were done properly, all kids with retinoblastoma would be diagnosed very early in the clinic,” he says.
And yet, that rarely happens because of how difficult it is to perform this test in the clinic.
“In my years of seeing retinoblastoma patients—and I have seen hundreds of them—I have only seen a handful who came because a pediatrician or a nurse practitioner in the clinic detected the cancer with the light-reflex exam,” he says. “All others are found when a parent said, ‘Doctor, there’s something wrong with my child’s eye.’
“By the time a parent can see leukocoria, the tumor has already filled two-thirds of the eyeball,” Rodriguez-Galindo adds. “That makes it more difficult to treat and save the eye.”
Saving eyes and lives
About eight years ago, 4-month-old Noah Shaw was found to have retinoblastoma after his mom spotted a white reflection in photographs. As a result of that experience, Noah’s dad, scientist Bryan Shaw, PhD, and his colleagues at Baylor University designed a program called CRADLE (Computer-Assisted Detector of Leukocoria) to scan photos for the tell-tale white reflex.
“When I analyzed my own family photo album of 9,000 pictures,” Shaw says, “I found that my son’s leukocoria started showing up when he was 12 days old. If he had begun treatment then, he might have been able to keep his right eye.”
Not only will the app scan existing photos on a user’s phone, but it can also evaluate a video taken by a clinician during an exam.
Now Rodriguez-Galindo, with the help of Harvard Medical School student Alexandra Power-Hays, is heading a St. Jude clinical trial to validate the app’s sensitivity and determine how it works best. The long-term goal is to provide health care workers worldwide with a free tool they can use with confidence.
“In America, the proper use of this app may save eyes,” Rodriguez-Galindo says. “But in countries with limited resources, the proper use of this app could actually save lives.”
As soon as the clinical trial is complete and the tool has been validated, St. Jude will use the app to screen children worldwide. Plans are already in place to use the app in Guatemala and the Philippines, where St. Jude has an established early-diagnosis campaign for eye diseases and other health issues.
Lela Moody’s mom says she’s excited about the app’s potential.
“Wouldn’t it be great to harness technology in that way?” Mandy asks. “I look at Lela, and she’s so full of life and energy and excitement. We’re thankful for all the little things we get to experience with her. If this app can be used to save other children’s lives, it would be huge.”
From Promise, Spring 2017