Dr. Ashi Khurana, Vice-Chairman, C.L. Gupta Eye Institute is a cornea specialist and manages the Retinopathy of Prematurity Eradication Project. The project screens premature infants in Moradabad and five surrounding districts for Retinopathy of Prematurity (ROP), which can cause irreversible blindness if left untreated.
World Prematurity Day: Dr. Ashi Khurana, Vice-Chairman, C.L. Gupta Eye Institute on preventing blindness in premature babies
An eye condition that is all but invisible to parents, pediatricians and the community can silently rob premature and low-weight infants of their sight. The condition must be treated early or the infant can go blind, not as a baby, but years later as a child. The condition is called Retinopathy of Prematurity (ROP), and in 2016, it became all too visible to eye doctors at C. L. Gupta Eye Institute.
Dr. Khurana remembers a doctor coming to her and being “very concerned as they found that a lot of children were coming in and had gone blind due to ROP.” It was a major problem that no other organization was addressing. ROP can be treated but it requires screening, diagnosis and urgent treatment that can include injections and laser eye surgery.
However, there was no widespread public health initiative to address ROP. Dr. Khurana and her team saw the shadow that blindness from ROP caused on children, their families, the health care system and society. Though a small number of babies develop ROP and lose their sight, “there is a huge impact on the life of that child and their family because someone, often the mother, becomes the caregiver.” There is a direct impact on the mental, physical and financial resources in a family, she says. Later treatment is also often complex, intensive and has poor outcomes. “It is very frustrating as a doctor,” says Dr. Khurana, “when there is not much you can do for a condition that could have been prevented.”
Conditions impacting premature infants, such as ROP, are on the rise
Premature births are a global issue. The World Health Organization data from 2020 estimates that 13.4 million babies, or one in 10, were born premature.
India has the highest prevalence of premature births in the world. Data from the Lancet found that three million premature babies were born in India in 2020.
The emergence of local NICUs has greatly increased the survival rate of premature infants. This has led to a shift from survival to quality of life by addressing the complications of prematurity. “ROP is a modern disease as more babies survive due to high quality NICUs,” Dr. Khurana says.
Conditions of Premature Infants on the Rise
To address the growing need and fill the gap in service, Dr. Khurana and her team launched an ROP screening program in Moradabad, Uttar Pradesh, India. Initially it was a pilot and then it expanded to include a partnership with Operation Eyesight Universal and was called the Retinopathy of Prematurity Eradication Project.
On a mission to raise awareness and start screening for ROP
At that time, Dr. Khurana remembers that C. L. Gupta Eye Institute was not getting a lot of referrals from pediatricians to screen the eyes of premature infants for ROP. She knew that they needed to start an awareness campaign to educate doctors and pediatricians about ROP and the need to screen. “It should just happen, like a vaccine,” Dr. Khurana says.
The team started knocking on doors and going into NICUs to talk to not only doctors but also NICU managers and nurses, who are often the ones responsible for requesting ROP screenings.
Screening requires specialists and equipment often found in an eye hospital. As premature infants cannot travel and spend their first few weeks in emerging NICUs, the screening needs to take place there. However, many of the infants are fighting for their lives. “They have a lot of complications and there is a lot of priorities for doctors and stress for families,” Dr. Khurana says. “And then with all that, this issue of blindness comes up.”
There are also a limited number of eye doctors, and it can be challenging for them to travel to multiple NICUs to screen premature infants “who may or may not have an eye problem.”
An ambitious screening goal
The initial goal was to screen 500 children “which was huge,” Dr, Khurana says. To achieve this they sent optometrists to screen premature infants for ROP regularly at 40 local NICUs. Infants with ROP were referred to C. L. Gupta Eye Institute for urgent treatment.
In the first phase, the team screened 464 premature infants and saved 50 children from blindness. “It has been very satisfying for our doctors,” Dr. Khurana says.
In addition to raising awareness among medical staff, Dr. Khurana’s team started to educate the community as well. Not all parents are able to understand why screening and treatment are needed. There can be literacy and poverty issues that need to be addressed and at times, parents may deny treatment. Gender can be a factor as can birth order, if there are many children in the family.
People who can pay do, those who can pay part of the cost contribute what they can and those who cannot pay are supported by Operation Eyesight Universal. In this way, “everyone receives care and treatment.”
The second phase of the project launched on July 16, 2024, expanding beyond Moradabad to Sambhal, Bijnor, Amroha, Rampur and Baduan. Reaching these semi-urban areas was possible due to a mobile van with the required equipment, made possible through the Rotary Foundation, for onsite screening and treatment in rural and underserved areas, a tele-ophthalmology platform that allows experts to provide remote consultations, diagnoses, and treatment recommendations, an expanded network of neo-natal intensive care units in the five new regions and continued medical education to raise awareness of ROP, capacity and skills of NICU staff in the additional districts.
In December 2024, the Retinopathy of Prematurity Eradication Project ends. Services will be maintained with C. L. Gupta Eye Institute, a non-profit, covering costs for those who cannot pay, and working with NICUs.
ROP is a modern disease that requires resources
ROP is being studied and the ROP Society of India is looking at the impact of the condition on the country. As more NICUs emerge and more premature infants survive, ROP is appearing more frequently.
Now, Dr. Khurana and her team are working to raise awareness of ROP in the community, among parents and with medical professionals. What is needed is more resources, public health support and training for doctors.
For now, her team is small but dedicated. “It is satisfying for us to make a difference in the lives of these children and families,” she says.
For the premature infants and their families in and around Moradabad, there is hope of a bright future.
See how this this project works in the video Born Too Soon: Retinopathy of Prematurity Project, Moradabad, India.
Read about how this project transformed the life of Baby Aarsh and his family.
