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.
