The child was born 33 weeks into the pregnancy, two months premature. It also had transposition of the great arteries, a heart defect at birth. A few years earlier, there would have been no chance for the survival of a baby like that. But now, even during the days of the COVID-19 lockdown, the child could undergo an operation at the Amrita Hospital in Kochi, and go home with the parents within a month.
Reducing deaths due to congenital heart defect (CHD) – heart defect at birth – has contributed in a big way to bringing down Kerala’s infant mortality rate (IMR) to 7 deaths per 1,000 live births, one less than the number aimed for by the United Nations, according to reports. Chief Minister Pinarayi Vijayan announced it as good news on Mother’s Day, that Kerala brought down the number of deaths in a thousand live births from 10 to 7.
Even earlier, Kerala has had a better number compared to the rest of the country. The national average is at 32 now. Kerala, meanwhile, had been at 12 since 2001-02. But that number had been stagnating for too long, says Dr Ekbal, member of the Kerala State Planning Board.
“To find out the reason it’s been stagnating at 12 and to rectify it, the health department had convened a meeting a few years back. Studying the statistics in detail, it was found that the mortality is more in the neonatal period – that means the first 28 days after birth. And one of the main reasons was found out to be congenital heart disease,” Dr Ekbal says.
That’s when the state government formed the Hridyam project, to treat children born with CHD, free of cost. Money was a big issue earlier, and non-availability of a treatment centre nearby was another problem. “Once you register on Hridyam, it will be free of cost. The transportation also will be free,” says Dr Sreehari, state nodal officer for child health.
Critical heart surgeries for children were done only in a few centres before, including the Sree Chitra Tirunal Institute in the public sector.
“They used a first-come-first-serve strategy and this meant that slots were not always available. So, a critically ill child may not get a slot. Now, eight in 1,000 children will have some sort of heart disease, out of which four would have CHD. Two or three among them will die if they are not operated on soon. With Hridyam project, we brought all slots for heart surgeries into one pool, which means that all slots of the 10 to 12 heart surgeries performed in a day would be open if there is a case from Hridyam; they would get first priority,” Sreehari explains.
There are now about five to seven centres across the state performing pediatric heart surgeries. This means that people in remote areas may still find it hard to access health care.
Transportation may not be easy once the child with CHD is born. That’s where the intervention of Dr Balu Vaidyanathan became a big step. He is a clinical professor of pediatric cardiology at Amrita Institute of Medical Sciences (AIMS) and suggested, in consultation with Dr Ekbal, that CHD be detected before birth, during pregnancy through an anomaly scan.
“Instead of waiting for the baby to be born and then find out if the baby has a heart problem, we could do a heart examination in the anomaly scan. It is one of the ultrasound examinations that pregnant women go through at 20 weeks of pregnancy. The women carrying babies with CHD were referred to one of the centres that do pediatric heart surgeries, so that deliveries can happen in the same centre or somewhere nearby. This also means that the treatment of the baby could start soon after delivery, without any delay. The overall surgical results were much better and the cost too was less,” says Dr Balu.
Flash card used for training of doctors
With the support of the government’s Hridyam scheme and the National Health Mission (NHM), Dr Balu embarked on a mission to train 500 doctors across the state on how to detect CHD in pregnant women through the anomaly scans. “We streamlined protocols to the local context, created a flashcard on what a normal heart should be like. With the help of the NHM, we also brought out a booklet. The doctors were given lectures, hands-on training and complete awareness,” Dr Balu explains.
CHD was only one of the reasons contributing to infant mortality. Dr Brijesh, a pediatric heart surgeon in Kochi, says that other reasons such as children dying due to respiratory infections and diarrhoea were tackled in the state many years ago. “That’s why the rate had come to 12 much earlier. To bring it further down, we had to reduce the deaths due to CHD as well as babies born pre-term,” he says.
Dr Brijesh says that the state government realised the importance of public-private partnership (PPP) in tackling this problem. “It needs a comprehensive set-up and PPP will improve the situation. In the Hridyam model, even with PPP, there was much involvement of the government compared to other states. Those who register on Hridyam could undergo heart surgery wherever they want. Every child born in the state and having CHD will get registered, and be followed up by the government, involving a panel of doctors. The system made sure that a significant percent of children who were earlier dying, got treatment as soon as they were born,” Dr Brijesh says.
Building such systems is what really helped bring down the IMR, Dr Sreehari says. Hridyam is only one component of it.
“It was a time when IAS officer Rajeev Sadanandan had joined as the Additional Chief Secretary of the Health and Family Welfare department. An expert working group was formed and he asked us to prepare a concept note on why the IMR was not reducing (from 12). Many plans were developed. Among them, it was decided that focussed intervention was needed for infant mortality reduction, other than routine activities. Routine analyses were done every month, by every district. Causes were analysed and a system building happened. What we see now – the reduction to 7 – is a result of the activities done in 2018 and 2019,” Dr Sreehari says.
The number of institutional deliveries in Kerala is nearly 100%, so is the antenatal care (preventive health care during pregnancy), says Dr Vishnu Mohan, National Neonatology Forum, Kerala.
“Since the last 10 years, the NNF, along with the Indian Academy of Pediatrics and the NHM, has been doing a lot of neonatal resuscitation programmes – care given to the newborn immediately after birth. Over 5 lakh people - up to the lowest grade of healthcare workers - have been trained for this in the last 10 years. Along with that, the Kerala Federation of Obstetrics and Gynaecology, in association with government, does a monthly audit of maternal deaths and near-misses, in every district. Kerala is perhaps the only state to do this,” says Dr Vishnu.
Down to the grassroots level, it goes back to the public health workers on the ground, to help the government monitor the growth and development of babies, he adds.