When Bryan Shaw’s wife Elizabeth first pointed out that a white reflection would sometimes appear in their 3-month-old son’s eyes in pictures, he brushed it off as a side effect of flash photography.
Elizabeth mentioned her concerns to their pediatrician during Noah’s next visit, and when the doctor shined a penlight in his eyes, she saw a similar white light reflected. The doctor then sent the Shaws to an ophthalmologist who confirmed the devastating news that same afternoon: Noah had tumors in both eyes.
“My wife freaked out,” Shaw, 39, tells PEOPLE of his son’s diagnosis of retinoblastoma, a rare eye cancer affecting young children. “She was running around screaming. When I got home, it hit me and I couldn’t talk. I was whacked.”
After his diagnosis, Noah endured three months of chemotherapy, 30 cycles of radiation, and ultimately, surgery to remove his right eye.
“The reason the eye had to come out was because the tumor was so big, it was covering his field of vision,” Shaw explains. “Even if we saved it, he wouldn’t have had much vision in it anyway, and the radiation we would have had to have given him would increase the risk of bone cancer.”
“I’ll never forget that first session,” Shaw says of his son’s treatment. “He was in a stroller, sleeping. He already had a port in his chest and so we just plugged him into the chemo and fortunately he slept through it. Later that winter, he went through 30 cycles of radiation. That involved general anesthesia every week day at 6 a.m. for a solid month.”
Throughout Noah’s treatment, Shaw began to wonder how long the white eye condition, known as leukocoria, had been showing up in pictures. He started to think about what would have happened if the camera had been programmed with software to detect leukocoria.
In the fall of 2010, Shaw decided he wanted to make that idea a reality. He began studying the thousands of pictures he and Elizabeth had taken of Noah since his birth. He discovered that the first signs of leukocoria showed up when Noah was just 12 days old.
“It started increasing in frequency and showing up in more and more in pictures,” Shaw says. “By the time he was 4 months old, it was showing up in 25 percent of the pictures taken of him per month.”
Shaw developed a scale for how much leukocoria was in a particular picture. Enlisting a few computer science colleagues at Baylor University, where Shaw is a professor of chemistry, he came up with an initial prototype for the software.
“I was chipping away at this while I worked on other stuff,” Shaw says. “But I just kept telling myself, I really need to do it. This disease is tough to detect. Not only could this software save vision, but it can save lives.”
Two years later, with the help of Baylor professor Greg Hamerly and graduate students Ryan Henning and Erick Huntley, the app was developed, and in October 2014, it was released on the iTunes App Store, where it can be found by searching the term “white eye detector.” It was released for Android in July 2015. The free app goes under the acronym CRADLE, ComputeR Assisted Detector of LEukocoria.
The app functions by searching through all of the pictures stored in your device in order to detect white eye. It can also be used in scanning mode by turning your smartphone into a crude ophthalmoscope and allowing you to wave the device over the child’s eyes. Green boxes appear around the eyes, and if a reflection is detected, the box turns red.
The app has been downloaded over 40,000 times, and Shaw is focusing on improving the software – and getting the word out to parents and physicians.
In the past year, CRADLE has led to the diagnosis of several different eye conditions in children, including retinoblastoma, refractive error, Coats’ disease and corneal abrasion.
Sarah Lessman, 33, said her “world was flipped upside down” when she noticed the “glow” in her 2-year-old son Landon’s left eye in the fall of 2015. She started searching the Internet for more information and came across an article about Shaw and the CRADLE app.
Lessman and her husband then downloaded the app, and after scanning all of their pictures discovered the glow had been appearing in Landon’s eye since March that year – but since they rarely use the flash when taking pictures of their son, they hadn’t noticed it before.
Landon was then diagnosed with Coats’ disease, a rare condition where abnormal development in the blood vessels behind the retina of the eye result in leaking fluid, which can lead to detachment of the retina and blindness. In December 2015, Landon received his first laser and steroid eye treatment, a surgical procedure that required him to be put under anesthesia. Next month, Landon will have a checkup to determine if another surgery is necessary. His eye is now permanently more dilated than his other eye and he doesn’t have much central vision due to the fluid behind the retina. He also wears protective glasses to maintain his good eye.
“If more doctors would use the CRADLE app during regular well visits this could lead to more children being diagnosed early,” Lessman tells PEOPLE.
CRADLE also helped detect myelin retinal nerve fiber layer (MRNFL), a condition in which a myelin sheath around the eyeball affects the retina and diminishes sight capability, in Lee Gordon’s daughter, Catherina, now 6.
After noticing a reflection in Catharina’s right eye in a picture taken on Dec. 31, 2014, Gordon and his wife sent the picture to their physician, who scheduled an eye exam for Catharina. Since it was a holiday and they had to wait a few days until the soonest appointment, Gordon, “desperately trying not to panic,” began doing his own research and came across CRADLE, which indeed registered leukocoria in Catharina’s eye. Catharina was diagnosed two weeks later with MRNFL by an ophthalmologist, and has improved her vision incredibly in the last year by wearing a patch on her strong eye to strengthen the weaker, but corrected eye.
“This app is incredibly important for all parents in that it’s an easy simple way to confirm the necessity for a deeper visual examination of a child,” says Gordon, who is “profoundly grateful” for CRADLE. “In the best case, there is no leukocoria. In the worst case, assuming no visual condition exists, is a trip to the ophthalmologist.”
Meanwhile, Shaw has found himself surprised at how many different eye conditions the app has detected in small children.
“Getting kids diagnosed will improve their vision and development, and parents are leading the way in improving their children’s vision and health – they scan their child’s eyes every time they take a picture, thousands of times each year,” Shaw says. “From here, the software is going to get better. It’s going to get more accurate as we collect more and more pictures to train it and make it smarter.”
“I want white eye to be added to the list of things parents are always screening their kids for,” Shaw continues. “Doctors still need to be looking for it, but parents, so do you, and we’re going to help you look for it.”
The app has also received positive attention from experts, such as Monika Koenig, head of the board of trustees of the German Childrens’ Eye Cancer Foundation.
“What [Shaw] has done with the CRADLE app on a scientific and organizational level is amazing,” Koenig, 46, says. “Earlier detection is the main goal: It avoids the removal of the eye, it avoids severe treatment with late effects (like chemotherapy and radiation) and it saves lives! In Germany, we are in the process of establishing the CRADLE app in pediatric practices.”
According to Dr. Carlos Rodriguez-Galindo, the director of the International Outreach Program and chair of the Department of Global Pediatric Medicine at St. Jude Children’s Research Hospital, Shaw’s software is “very promising.”
“This is a tool with enormous potential,” Dr. Rodriguez-Galindo says, adding that they are now finalizing a protocol to validate the tool and test its sensitivity and specificity.
Noah is now almost 7 years old, and each prosthetic eye he has worn serves as a reminder to Shaw that “nobody needs to die from this cancer.”
“It’s going to be tough to eliminate vision loss, but this software can eliminate the death associated with this disease just by early diagnosis,” Shaw says.” At the worst, they lose one or both of their eyes – but they still have their life.”