The agonising wait to see two little feet did not end for this young mother when doctors confirmed twin babies following treatment for infertility. Shivani and her brother were delivered by skilful hands in a hospital in Guntur. The babies were too fragile due to premature delivery and only one of them survived the trauma. After two weeks in Neonatal Intensive Care unit (NICU) fighting out the threat of infection, breathing problems, jaundice, lack of blood elements, feeding difficulties, etc the fragile Shivani weighing just 1000 grams was handed over to her mother, Narayanamma.
However, all the care givers were blissfully unaware of a looming threat that had started inside her eyes - in the retina. Because of the extreme prematurity and low birth weight compounded by the additional problems of oxygen use, infection and anaemia, the retina in her eyes had failed to develop normally. Blood vessels in the retina were growing abnormally and would soon bleed with no external signs visible to the doctors, the parents or the staff. Child appeared to have normal eyes; she was responding to light and moving the eyes normally as if searching around to see. Only about 2 months after birth, the child specialist recommended an eye test and suggested that the parents visit Dr.Chaitanya, an eye specialist in Guntur.
Dr.Chaitanya had returned to Guntur after completing her training at L V Prasad Eye Institute (LVPEI). The training was on how to take care of eyes of a premature baby, especially for the potentially blinding disease called ROP- Retinopathy of prematurity. LVPEI, helped Dr Chaitanya master the science of treating ROP. She spent one month visiting several NICUs in Hyderabad with the teaching faculty from LVPEI for hands on experience. Examination of these babies required using an indirect ophthalmoscope to peek into the inside of the eyes of infants in incubators to learn what ROP looks like. She learned how to use laser in eyes where retinal bleeding was seen. Initially hesitant, after a month, Dr Chaitanya was extremely confident to handle the tiniest of her potential patients. She realised very soon that ROP is a time bound disease and the urgency to act swiftly.
But training was not enough. Dr.Chaitanya had a much bigger obstacle to overcome before babies would come for treatment at the correct time- the obstacle of information and lack of awareness. She started a sustained and systematic campaign in her town aimed at creating education and awareness amongst the dozens of child specialists and fellow eye doctors. She printed flyers and distributed them to all concerned hospitals and clinics, she wrote articles in the local press; She arranged a CME (continuing medical education) on ROP for the practitioners where faculty from LVPEI gave lectures; again she followed up the CME with regular weekly telephone calls to all NICU asking if there were any babies to screen. One such call to Shivani’s pediatrician was what had awakened him to consider an eye checkup for the baby and motivated him to send the baby to Dr.Chaitanya on July 9th!
One look at the retina of the baby left Dr.Chaitanya aghast. She could see the ROP in a very advanced stage and knew that time was running out. Shivani had to undergo laser within next 2 days or things would go out of hand and chances of permanently losing her vision were very high. Vision would never return for this baby who had survived such a stormy beginning to her precious life. The parents were advised to rush to LVPEI at Hyderabad, however, considering their poor economic background they visited Dr Rama Devi at Vishakha Eye Hospital in Vishakapatanam, another doctor who had undergone ROP training at LVPEI. Under her best capability, Dr Rama Devi performed two sessions of laser treatment. But the challenge was far from over. The old blood was pulling on the retina that had started to detach in the periphery and in a week or so would reach the centre of the eye, leading to irreversible vision loss. The doctor knew that this was an extreme case of emergency; Shivani had to be sent to LVPEI in Hyderabad. Dr Rama was confident that ROP cases will be attended to without prior appointment at LVPEI so Shivani and her parents rushed to LVPEI at Hyderabad.
On presenting the referral letter, the receptionist who was fully aware of the emergency nature of ROP, processed their registration without any delay. They were whisked away to the third floor to the exclusive childrens’ centre where a nurse instilled the appropriate eye drops to make Shivani ready for examination in 20 minutes. The doctor, Dr. Subhadra Jalali, perfomed a detailed examination of Shivani’s eye. She explained with the help of RETCAM pictures and video indirect Ophthalmoscope recordings, what was happening inside the eye. For the first time the parents had the opportunity to actually see the complexity of the case in the back part of the eye- the retina. After a series of consultations surgery was the next step. Within a short period of time, the surgery was conducted in both eyes uneventfully for stage 4 ROP. In the evening, Shivani was taking feeds and seemed comfortable. Bandages were removed the next day. Shivani was discharged with a reassurance that the battle was now decidedly won and the crisis was over, though the treatment was not. Two weeks later on re-evaluation the child was smiling at the doctor and responding to the whims of a lighted doll that lay before her. RETCAM photos now showed no blood or detachment. Shivani was referred back to Dr.Chaitanya in Guntur for further management that could be done closer to home. The importance of eye drops, checkups and optical glasses were explained.
Few years ago, before the SSI sponsored ROP network of services in Andhra Pradesh had been set up, such babies had no chance of retaining their vision. Their child specialists and eye doctors were not aware of the time bomb ticking away in premature babies’ eyes and such babies were brought to LVPEI only at 6-7 months of age with total retinal detachment (stage 5ROP). Heart wrenching stories of premature babies losing their eyesight over the lack of trained doctors and hospitals were a tale of the past. The story today is different. Shivani’s vision had been successfully restored from the brink of disaster. Better results could have been achieved if Shivani’s parents had been informed by their child specialist (Paediatrician/neonatologist) about the importance of early recognition and timely retinal screening before 30 Days of LIFE.
Surgery had been done at no cost to the poor parents and with facilities that were second to none in the world-thanks to the generous grant from the SSI that had facilitated a network of ROP services in the state of Andhra Pradesh. From Guntur to Vizag to Hyderabad a whole network of trained people had helped them achieve this wonderful result. Each link in this chain had been vital. Each mesh in this network had carried out its assigned role diligently with the result that the baby did not fall through but was carried forward to a successful outcome. For Shivani and many more future Shivanis’ in Andhra Pradesh the future is bright and life awaits them with open arms. Today, Shivani can see and play, tomorrow she will read and write in school, possibly unaware that the glint in her eyes was lit by a beacon generously donated thousands of miles away on the other side of the globe, through Sight Savers International.