As the national referral point for retinoblastoma cases for all of Venezuela, Dr. Livia Romero, a Pediatric Ophthalmologist in Caracas, has treated more than 500 patients since the first national Ocular Oncology unit at the Oncologic Institute Dr. Luis Razetti was created in Caracas 10 years ago. A majority of these cases came to her with a retinoblastoma diagnosis due to the detection of leukocoria, but unfortunately most of the children come late with advanced stage disease, leading many families to remark “if we only knew” about the Glow and leukocoria sooner. There is currently no ocular program of prevention aimed at identifying young children in Venezuela so many of these eye diseases will continue to go undiagnosed for far too long and for many sight will be irrevocably lost. Dr. Romero lamented to Megan Webber, Co-Founder of KnowTheGlow, that there are so many children who will never find their way to her. Children are going blind and even dying and early detection could have prevented these tragic outcomes if their conditions had been detected earlier when treatment would have been easier and more effective.
As the only doctor in Venezuela seeing retinoblastoma cases one can imagine the toll that the pandemic has taken on Dr. Romero and her ability to treat and see these patients who so desperately need her care. Last year at the height of Covid, Dr. Romero herself was stricken with the Covid-19 virus and had to miss work for two months. Dr. Romero was devastated that no one was there to take her place to see and treat the children. Hers is an extremely demanding job both physically and emotionally and any doctor has to be very strong to work with these families during these very trying times. Telemedicine has been an essential tool assisting her in reaching more families but the problem still remains of physically finding ways to get the children in to see her for treatment and followup in Caracas.
Before the pandemic Dr. Romero saw 35-40 patients a day for ongoing treatment and care but now the access is very difficult, and there is no way to house the families who do come for treatment. In addition to her ongoing patient families, she sees a minimum of four brand new patients each month who are just being diagnosed and are able to find a way to physically get to Caracas to be seen. Dr. Romeros does have the help of medical residents from the university who work with her on one month rotations which is very helpful since her team consists of only one secretary, 2 anaesthesiologists and 2 nurses. There are no private hospitals that treat retinoblastoma so Dr. Romero has made it her mission to make sure the referring doctors, nurses, residents, med students, pediatricians and the general population are aware that a white reflex is not normal and that if it can be detected sooner the child’s eyesight can be saved. Dr. Romero wants to build this general awareness of the Glow and early eye care preventive consultations for children, so when she spotted KnowTheGlow on social media she recognized a vital resource that could help her spread awareness throughout Venezuela and beyond. It is Dr. Romero’s dream that every baby born has an obligatory eye exam making it possible to save sight for the children of tomorrow in Venezuela and around the world.