Policy Makers – ROP

On 2 February 2017, baby Naveena and her twin sister Radha were born prematurely at District Hospital, Nalgonda in Telangana. Born at 28 weeks of gestation, Radha one of the twins died due to complications. On the fifth day of their birth, the mother who was HIV positive died due to post-partum haemorrhage.

Baby Naveena weighed one kg when her mother died. Unable to deal with his wife’s death, Naveena’s father abandoned her and never came back. The dedicated SNCU staff and the head of the SNCU unit Dr Yadaiah took utmost care of baby Naveena and made sure she was alive. One big sigh of relief to the SNCU team was Naveena’s blood report was found negative for HIV.

Over the days Saritha, a 26 year old mother of two children who is also part of the support staff at Nalgonda SNCU took charge of Naveena. She gave her Kangaroo Mother Care (KMC) support for 6 hours a day. Along with KMC other lifesaving interventions were also used; a sound spa that enabled her to develop sense of hearing, a water bed to prevent bed sores and a wrist device tied to her arm to detect hypothermia. Expressed breast milk (EBM) network, an effective innovation helped Naveena have access to breast milk donated by other mothers. With the love and compassion from SNCU Nalgonda team Baby Naveena gained significant weight. Dr Chandu who was ROP specialist at Nalgonda District Hospital used to check on her at regular intervals.

Naveena’s story clearly demonstrates that practising quality neonatal care (POINTS – Pain control, Optimal oxygenation, Infection control, Nutrition interventions, Temperature control and Supportive care) with strict adherence to protocols can not only help babies survive but thrive as well. These interventions reduce the incidence of ROP from 47.2% to 22.7% (according to an experience from NICU in Northern India).

Naveena’s story is being covered widely in magazines to generate motivation and inspiration among healthcare providers, also to spread awareness about impact of quality improvement in care provision at SNCUs.

Collaboration of PHFI, under the Trust supported ‘Retinopathy of prematurity programme’, with District Hospital, Nalgonda; Fernandez Hospital and LV Prasad Eye Institute, protected the life and sight of an underprivileged girl baby

Baby Rishita is a girl child born in 28th week of gestation with 650 grams birth weight, on 30th December 2015. Her parents live in Perika Kondaram village, where female infanticide is a major social problem. The village is about 70 Km from the district headquarters, i.e Nalgonda Town and about 35 Km from the nearby small town, i.e. Nakrekal. The village doesn’t have provision for public transport and the people depend on private auto rickshaws for transport, which are also very few. The parents of the baby are college dropouts and working as agriculture labourers. The family belongs to Scheduled Caste, doesn’t have their own farm, but have few sheep.

Rishita’s mother suffered from hypertension during pregnancy and had eclampsia before delivery. At 28 weeks pregnancy she had to undergo caesarean section in a private nursing home. She was hospitalized in a private nursing home for 9 days and bed ridden for about three weeks after her discharge from Hospital. About one lakh of out of pocket expenditure for her treatment during and after delivery, left the family in debts.

The private nursing home refused to admit the 650 grams baby as there was no hope on its survival. Then the relatives admitted Rishita in Nalgonda District Hospital. Nalgonda District Hospital is the only nearby government hospital, where there is a Sick newborn care unit.

Nalgonda District Hospital is a government hospital, has well equipped Sick Newborn Care Unit (SNCU), with a dedicated team of four well trained paediatricians and 12 nurses. Initially even this team had no hope on the baby until when it began to show positive signs. “I really had some belief that she could survive, when she was holding my finger” said Dr. Yadaiah, the in charge of the SNCU. Gradually this baby became ‘special’ to them. One of the doctors of the team came to know about using ‘sound spa’ as part of management of his grandson, who was also born premature and treated by doctors in USA. They got a ‘sound spa’ from the United States and used for this baby to have her hear different sounds of the world, which she would have heard from her mother’s womb, had she not born too early. Dr. Khadar Jilani expressed that there had been a bond among the baby and the hospital staff – “We were talking to the baby regularly”. They dedicated one sister in each shift for the baby.

The mentors of ‘the Trust supported model ROP programme’ in the State, Dr. Srinivas Murki from neonatology department of Fernandez Hospital, Hyderabad and Dr. Subhadra Jalali, retina specialist from LV Prasad Eye Institute, Hyderabad visited the unit frequestly and provided their support and guidance to the health care team of the unit. First screening for ROP was done at day 25 of birth of the baby, by the in-house ophthalmologist Dr. K. Chandu, who suspected retinopathy of prematurity (ROP). Dr. Subhadra Jalali noticed the need for a laser surgery to prevent blindness from retinopathy of prematurity. It was then; a laser surgery was performed, for the first time, in the SNCU in Nalgonda.

The mother expressed her gratitude towards the doctors, said that – doctors provided medicines for the baby and food and accommodation for mother. She said, “Dr. Yadaiah told that the vessels in the baby’s eyes were not developed accordingly and if regular eye check-up is not done it would gradually go into blindness.” The baby underwent laser treatment for ROP twice. Later on, before discharge of the baby, after screening for ROP the mother was told that the baby’s eyes were normal and there would be no problem.

The baby, of 1700 grams weight, was discharged from the hospital on April 29, 2016. As suggested by the hospital, the mother was ready to take the baby to hospital for monthly follow-up check-ups.

One of twin preterm babies of Sneha Kalokhe was referred from the district hospital (DH) in Nanded, a town over 400 km from Pune to it’s DH Neonatal Intensive Care Unit (NICU) for severe ROP. The preterm baby was treated successfully by the team from H V Desai Eye Hospital on 10th June 2017.

Sneha’s husband Bhimrao Kalokhe is a 28 year old young gentleman residing in remote village near Nanded district. He comes from poor socioeconomic background and works as a farm labrourer. He studied upto high school and then dropped out owing to family’s financial difficulties. His family of five (old parents, wife and a 5 year old daughter) are dependent on his meager daily earning of Rs. 300 (approximately 4.6 USD) per day. There are some days when there would be no farming which would be no work for Bhimrao.

Despite their poverty, the parents’ joy knew no bounds when they came to know of the twin pregnancy. Sneha, the mother went for regular antenatal care visits during the pregnancy but delivered prematurely at 33 weeks. She delivered in a private hospital and both the babies fell sick right after birth.

The twins weighed 1600 and 1700 grams respectively and doctors informed the parents that babies would require, oxygen and ventilation. They were admitted in the Neonatal Intensive Care Unit of the same hospital but the bill went up to Rs 56000 (USD 875) within a week. The family simply didn’t have money to pay the hospital or have any assets to sell. Thankfully their extended family came to their rescue and helped them pay the hospital bill. The parents were then forced to shift the twins to a government hospital where they could get free care.

Bhimrao was by the side of his wife for few days but could not afford to lose his income hence he had to leave his wife alone while the babies were being taken care in the SNCU. During that period the family was so short of money that sometimes they had to starve for a day or two. To add to their difficulties, Sneha got acute gastroenteritis during that period and had to be hospitalized adding to their financial burden.

Dr Chavan (paediatrician) from Nanded DH referred them to Dr Ghonsikar (ophthalmologist) for ROP screening. Dr Ghonsikar, a private practitioner who screens for ROP at Nanded DH noticed that one of the twins had severe ROP. Entire world came crashing down for the husband and wife when the ophthalmologist told them that both babies had ROP and could go blind if not treated on time. Both Sneha and her mother started crying. After so much of physical and emotional stress, they had to face another harsh reality.

The DH in Nanded did not have the facility to treat ROP in pre-term infants and the treatment was available only in few private hospitals. The parents could not afford to pay for the treatment in private hospitals and were advised to travel to Pune for the treatment. As laser treatment is expensive in private hospitals, Dr Ghonsikar referred them to DH Pune where free treatment could be availed. They chose to travel by train, a seven hour long journey with the newborn babies.

Dr Ashwini Sonawne, ophthalmologist from H V Desai Eye Hospital, went to Pune DH and performed laser on one of the twins who had severe ROP. When Dr Ashwini explained to them about need for follow up, parents readily agreed to stay in Pune for a week. During this stay, parents had to stay and sleep on the road as they could not afford to pay for a place to stay. Three adults had to share a meal of 2 Rotis (Indian bread) twice a day which Sneha was entitled to. They had no money to buy food.

Despite these hardships, they showed their utmost commitment for the welfare of their children and came back to H V Desai Hospital for follow up after a week. Dr Devika (neonatologist at Pune DH) and Dr Sirsikar (ophthalmologist) were kind enough to arrange free transport for follow up visit.

Parents were delighted to know that their baby’s ROP had started regressing and agreed to keep regular follow up with local ophthalmologist after going back to Nanded. They would also come back to Pune for follow up if advised by local ophthalmologist.

Coming to Pune proved a blessing in disguise for the family. Here they received all the support and counselling and free laser treatment for their child. Before leaving they thanked the H V Desai team and Pune DH for saving their daughter from going blind permanently.

* Name has been changed