A lifelong commitment

 
A retinal detachment, when the retina detaches from its place in the eye, is a daunting and scary experience — an emergency that could end in permanent blindness. But for Aman Kumar, it was also paired with exceptional personal care and comfort provided by his doctors at the Byers Eye Institute at Stanford.

Kumar was born with a condition called retinopathy of prematurity (ROP), a leading cause of childhood blindness. The condition is caused by abnormal blood vessel growth in the eye, which can happen when a baby is born prematurely and does not finish developing the critical network of blood- and oxygen-carrying vessels in their eyes before they are born.

The condition is a lifelong journey and, over time, can bring with it challenges like severe myopia or nearsightedness, cataracts at an earlier age, and a higher likelihood of developing glaucoma and retinal detachment. At the Byers Eye Institute, clinicians and scientists are tackling the growing disease through clinical care, collaborations, research, and tele-health programs that expand access to expert care in the United States and in underserved areas around the globe.

Kumar saw that relentless devotion first-hand at the age of 25 when he learned at the Byers Eye Institute that his retina had multiple tears and was detaching. He arrived for his emergency surgery the following morning to meet his doctor, the department’s retina expert and then-chair, Mark Blumenkranz, MD, MMS, HJ Smead professor emeritus, who flew home early from a conference to oversee the surgery.

“We showed up at the Byers Eye Institute at 6:45 a.m., they opened the doors for us, and Mark Blumenkranz was there, joined by Darius Moshfeghi,” Kumar said. “I remember how quiet the building was — I was the only patient being seen and there was this feeling that my doctors had dropped everything and nothing else mattered.”

Blumenkranz evaluated Kumar’s condition and drew up a plan with Darius Moshfeghi, MD, professor of ophthalmology and chief of the retina division. The surgery would be risky, but Blumenkranz was confident it could be successful.

Blumenkranz walked Kumar and his family to the surgery scheduler and sat with them to answer questions, Kumar remembered.

“For me, it was very much trusting in Mark, Darius, and just the sheer breadth of their combined practice and expertise,” he said. “I was very much in Mark’s hands in terms of how he wanted to solve this problem because there are many different techniques and approaches.”

Kumar is far from alone in his diagnosis. Each year, about 1 in 10 babies in the United States is born prematurely, and as medical advances help more premature babies survive the critical health hurdles that often come with being born early, ROP is on the rise. One recent study published in the JAMA Ophthalmology found the ROP incidence rate in premature infants born in the United States increased from 4.4% in 2003 to 8.1% in 2019, marking an 86% relative increase.

Globally, the numbers are tougher to estimate due to varying abilities by country to identify and track ROP cases, but experts broadly agree that incidences of ROP appear to be on the rise, particularly among lower-income countries.
 

SUNDROP’s Reach

Moshfeghi has been dedicated to addressing the rising rate of ROP for decades.

When Kumar was undergoing surgery for his ROP-related retinal detachment in 2012, the Stanford University Network for Diagnosis of Retinopathy of Prematurity (SUNDROP) program was gaining traction after being founded in 2005. It is the oldest and largest telemedicine program for at-risk infants in need of ROP screening.

SUNDROP was dreamed up and brought to fruition by Moshfeghi, who has worked hard to expand ROP screening to areas with less access to specialized care so he and his colleagues could find and treat the most vulnerable infants.

“Darius Moshfeghi was very ahead of everybody else in this way, and it was actually really striking to me,” said Chase Ludwig, MD, MS, who completed his residency at the Byers Eye Institute and is now a vitreoretinal surgeon and assistant professor there. “I remember when I went out on the interview trail for residency, I talked to people about whether they had a tele-ophthalmology screening program for ROP, and everyone said no. But this forward thinking is just the baseline at Stanford.”

Ludwig worked under Moshfeghi on SUNDROP for years and the two have partnered on peer-reviewed research on the topic. He has since carved a path as an expert on myopia, a common side effect of ROP and another fast-growing eye condition around the world.

Today, more than 30 neonatal intensive care units (NICUs) across 10 states participate in SUNDROP, and in 2023, they screened more than 1,400 babies through the program. The images taken at the clinics are sent to the Byers Eye Institute SUNDROP reading center, where a specialist analyzes them and recommends treatment.

Since its inception, not a single infant assessed and treated through the SUNDROP program has gone blind — a feat that Moshfeghi credits to the system he has developed over decades that has a high sensitivity for identifying cases of ROP that are considered “treatment-warranted,” because the baby is at a high risk for developing a retinal detachment later in life.

“We are at 100% sensitivity for treatment-warranted disease, which means we don't miss anyone who would actually go on to develop retinal detachment,” Moshfeghi said. “Even when the baby goes home from the hospital, we keep track of what happens to that baby as it relates to their ROP.”

Half-way around the globe, those same practices are being used to diagnose and help treat babies in areas with fewer resources and even fewer ophthalmologists with expertise in ROP. Three SUNDROP cameras are being used in clinics that are part of Cure Blindness Project which partners with the Byers Eye Institute to provide much-needed eye care in Africa, Asia, South America and beyond.

The impact of the SUNDROP camera is massive for the children, families, and the communities where children with ROP are being identified and treated swiftly.

“If we identify a child with treatment-warranted ROP early, it only costs us $100 to do the treatment to prevent the child from going blind in these clinics, but once a child goes blind from ROP, they're blind for life,” said Geoffrey Tabin, MD, co-founder and chairman emeritus of Cure Blindness Project and Fairweather Professor of ophthalmology and global medicine at the Byers Eye Institute.

Tabin and his partners at Cure Blindness Project are brainstorming ways to fundraise to bring more of the cameras to clinics across the world.

“It's difficult to be a blind child in America, but being a blind child in a resource-limited setting is much harder,” Tabin said. “We hope to lead the charge in eliminating blindness from ROP in these lower-resource areas.”