BLOG: ROP: A growing burden on the not-so-poor world
If she were born 15 years ago, 2-year-old Marina Gabrielian would not have lived long enough to develop retinopathy of prematurity. Fortunately for her, the maternity hospital in Yerevan, Armenia, the capital city of a former Soviet country of 3 million people, had recently received new physician training and acquired monitoring and life support equipment for prematurely born infants. Unfortunately for her, being born at 29 weeks’ estimated gestational age, she was at high risk for ROP, which she developed.
This same story is playing out worldwide. According to WHO, in 1990 nearly 9 million children died in the first month of life. Today, that number is less than half. But as developing nations help more of these children to survive, they face another burden of taking care of the complications that arise, and blindness from ROP is a leading drain on resources.
“It takes the whole family to care for a blind child,” says Roger Ohanesian, founder and president of the Armenian EyeCare Project, who has seen this scenario play out many times. “Those parents and aunts and uncles who are taking care of the child can’t hold a job at the same time.” The joy of seeing a child survive is quickly replaced by a lifelong worry of how to care for her.
Indeed, the ministries of health in countries like Armenia are paying close attention to the burden of keeping these children alive. With this worry in mind, they have keenly supported the efforts of the Armenian EyeCare Project, led by Tom Lee, MD, of Children’s Hospital of Los Angeles, to treat ROP.
“We are learning that treating ROP can be systematized and even scaled to outlying areas,” Ohanesian says. The Armenian EyeCare Project has purchased or secured donations of non-mydriatic RetCam equipment (Natus Newborn Care) in its five regional hospitals. It has trained doctors and nurses in taking photos of infants’ eyes and transmitting them electronically to the capital city, and even to the U.S., where retina specialists can assist in diagnosing at-risk eyes. Portable laser equipment can then be brought out to the regional clinic to treat the child within a day or so, and ongoing surveillance with the remotely placed photo equipment can allow confirmation that the treatments have been effective.
Even with telemedicine monitoring and trained local laser surgeons, saving the sight of these children is effort intensive for health care systems in small countries, but the human and economic impact of getting them properly treated has been immeasurable.
Two-year-old Marina agrees. Now walking and talking, her delighted parents say that she exhibits behaviors of typical fussy 2-year-olds. Though she may have other ocular complications in her life and will likely become highly myopic, the family is overjoyed at her progress. And delighted donors to the project receive regular updates on her growth milestones. Furthermore, international agencies like the U.S. Agency for International Development are looking closely at this nonprofit’s methods of preserving sight in hopes of scaling it to other countries.
“With progress comes challenges,” Ohanesian says. “And we hope to help other like-minded charities in other locations preserve the hope for vision for families of children who are perfect but for being born too soon.”
More information about the Armenian EyeCare Project can be found at www.eyecareproject.com.
Disclosure: Hovanesian reports he is a member of the board of directors of Armenian EyeCare Project.