For The Bright Stars in My Babies’ Eyes
Dr Subhadra Jalali, Associate Director, Srimati Kanuri Santhamma Centre for vitreoretinal diseases, Kallam Anji Reddy Campus, L V Prasad Eye Institute, Hyderabad
Shivani, Baby of Pallavi (names changed) was born on 9th June, after many prayers and agonizing years of wait for her parents living in the interiors of Nizamabad District in the newly formed state of Telangana. Her parents, married for last 9 years had celebrated with cautious optimism when their lady doctor (obstetrician) gave the good news of successful twin pregnancy following treatment for infertility. But the joy was short-lived. Pregnancy was complicated by an emergency premature delivery at 34 weeks for which the mother was rushed to the nearby bigger city of Nizamabad where medical facilities had vastly improved for such babies in past few years. A boy and a girl were delivered but alas the babies were too fragile to survive. The boy died in 3 hours. But she fought it out. She was only 1700 grams, but Shivani fought out the threat of infection, breathing problems, jaundice, lack of blood elements, feeding difficulties and what not. For two weeks in SNCU (special newborn care unit) this delicate life hung in a balance swinging from precipice of death to moments of hopeful life and in the end she made it! After 3 weeks the pediatricians happily handed over a bundle of joy to the mother. It was a great moment for everyone-how hard they all had worked!
However, all the care givers were blissfully unaware of a looming threat that had started in the inside of her eyes- in the retina. Because of the prematurity and low birth weight compounded by the additional problems in the SNCU, 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. The baby appeared to have normal looking eyes, she was responding to light and moving the eyes normally as if looking around to see. This is how the parents later expressed, ‘We were all the while under wonderful care of our child specialist who did frequent examinations and many tests to ensure a healthy baby, but the doctor did not tell any tests for the eyes till about six weeks after birth. Then on one of our visits on 18th July he suddenly asked us to go and see an eye specialist in the town. What had changed in Nizamabad?
In March, Dr. Subhadra Jalali, Retina specialist from L V Prasad Eye Institute, Hyderabad, under the NHRM program, had delivered a lecture in Nizamabad to Paediatricians, Ophthalmologists, Neonatologists and Government Health workers including staff of SNCU regarding ROP. In July, the newly appointed staff nurse in the Nizamabad SNCU had lovingly put up a poster of ROP on ‘Tees Din Roshni Ke’’ (Thirty days to vision!) and this poster had reminded the doctor on 15th July that baby Shivani was late for ROP! Just rush to eye specialist, he told Pallavi! ROP? What’s that? The staff nurse explained what she had learnt at the lecture in March- that Retinopathy of Prematurity or ROP, for short, posed a serious threat to the beautiful eyes and vision of Premature Newborns who graduated from any SNCU and NICU. Unfortunately this blinding disease is silent with no symptoms or signs from outside and eyes look normal till one day they seem to have developed a white spot- but by then the eyes are already irreversibly blind! Terrible news for any happy Mother and Family!
ROP can be detected only by a detailed Retinal Examination using an indirect ophthalmoscope to peek into the inside of the eyes of infants. This requires skilled training as one needs to learn how to hold a 700 gram or 1100gram baby and then look at the retina inside the eyes that can hardly be opened with hands. ROP is a time-bound disease. It has to be diagnosed and treated within a month or so of birth otherwise the baby can go onto a path of irreversible blindness- Hence the slogan ‘’ Tees din roshni Ke’’ just like the Polio slogan of ‘Dho boond Zindagi Ke!.
One look at the retina of the baby left the Ophthalmologist in Nizamabad aghast. She could see the ROP in an 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, she would never regain vision after having survived such a stormy beginning to her precious life. Nizamabad did not have a portable machine and baby would need to go to Hyderabad urgently. The Ophthalmologist was aware that she need not fix any appointment for such babies as ROP were seen as an emergency at the eye institute every day.
On 18th July, a Friday evening, the bewildered parents reached this big hospital and wondered at the gates of this imposing building as to where they would fit in. However, as soon as they showed 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 was ready to receive them and instill the appropriate ‘safe’ neonatal eye drops to make Shivani ready for examination in 20 minutes. The parents were unaware that the eye drops could be dangerous to the life of such a small baby if not instilled in the correct dosage but the nurse was very well trained in the methodology. After all, the ROP team at LVPEI had safely screened more than 10,000 babies so far and treated more than 500 eyes for ROP! The doctor came next, and completed a detailed examination of the eye. She explained with help of RETCAM pictures of the baby what was happening inside the eye. For the first time the parents had the opportunity to see for themselves how a normal retina looks like and notice the blood in the ROP retina of their baby. The picture looked pretty alarming and so what next? They looked up hopefully at the doctor. Laser was inevitable they were told. Minimal risks and huge benefits of Laser in the tiny baby was discussed and parents were reassured of the expertise of a whole team of professionals who would be involved to ensure that the bright stars in Shivani’s eyes would continue to twinkle throughout her life! The team was around them- the ROP surgeon, neonatal anaesthesiologists, physicians, trained nurses, optometrists and vision care professionals, pediatric optical facility and so on. Things were swirling past them and events seemed to be rushing around them like a roller-coaster ride. One important thing the parents definitely understood was the serious disease in the eye that could lead to blindness in their baby and in their whole world thereafter!
Next day, on Saturday, in less than 24 hours, Laser was conducted in both eyes uneventfully for stage 3 Plus ROP that has 50% chance of complete blindness if not treated. In the evening the baby was taking feeds and seemed comfortable. 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 following the lighted doll in front of her eyes. RETCAM photos were taken and showed no blood and no detachment. There was relief all around as the crisis was now over. Further eye drops, checkups and possibly optical glasses would be needed. A beacon of light from Hyderabad had guided the staff nurse in Nizamabad ‘so that all may see’!
Few years ago, before the NRHM ROP awareness program in Telangana (and 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 the eye specialists only at 5-6 months of age with total retinal detachment (stage 5ROP). This happened only when the parents became aware that eyes looked white and child was not recognizing the mother. At that time the retinal surgeon could do nothing except give the devastating news to the parents that their baby was never going to see again no matter how much of money was spent- it was too late! The child would have to go to either blind school or if available, an integrated school for rehabilitation of blind.
The story today was different. Vision had been successfully restored from the brink of disaster. Better results could have been achieved if the child had been referred for ROP in 4th week of June rather than in July but still all had not been lost. For Shivani and many more Shivanis’, 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 how close she was to losing those two bright stars in her eyes, because she was born preterm and did not reach an eye specialist within 20-30 days of her birth!