Congenital heart disease is the primary cause of child mortality in India, but till recently there were very few hospitals dedicated to treating it. C Sreenivas wanted to make a difference on this count and that was the impulse that drove him to set up, in November 2012, the Sri Sathya Sai Sanjeevani Hospital (SSSSH) in Raipur in Chhattisgarh.
SSSSH is the first dedicated paediatric cardiac care hospital in India and Mr Sreenivas cites his guru, the late Sathya Sai Baba, as the inspiration behind it. Mr Sreenivas has guided the Sanjeevani group to establishing similar hospitals in Haryana and Maharashtra, as also maternal- and infant-care centres and training institutes.
The three congenital heart disease hospitals of the Sanjeevani group provide treatment free of cost to all patients and have, in the past decade, performed more than 21,500 paediatric heart surgeries and cardiac interventions for children from India and other countries. Mr Sreenivas, who says he lives out of a suitcase, talks here to Labonita Ghosh about how this has been made possible. Excerpts from the interview:
Why does India have such a high prevalence of congenital heart disorders among children, and how does this compare with global figures?
It is estimated that 300,000 children are born every year with congenital heart diseases (CHD) in India. The figure could be higher because a large number of these cases stays undetected and few make it to hospitals to get cure and care. Our larger population may account for the higher prevalence but an alarming number of cases go untreated. According to some estimates, there are 30 million people living with CHD in India — that’s more than the population of Australia — and the numbers are growing every year.
Our experience over the last 10 years shows that CHD in children has multifactorial causes, particularly poverty and the resultant malnutrition. Other causes include poor antenatal care, which puts many women at the risk of infections post pregnancy; inadequate vaccination for women and children; pollutants in the air, water and food; and drinking and tobacco use by parents. Another telling factor is the early marriage of girls.
Of the 30 million living with CHD, are there children who have grown into adulthood and carried the disorder with them?
When a defect at birth stays undetected and if the child grows into an adult, then it becomes adult congenital heart disease. In many of our centres we see those who are 20-plus with CHD. This is also a result of not seeking timely treatment. If you survive, you have a relatively poor quality of life.
For those who manage to somehow live for longer periods, CHD becomes a way of life. But treatment can improve the quality of life of these people. There are certain types of CHD which may need repeat interventions, but these are far and few between. Otherwise, the beauty of treating CHD is that it’s a one-time fix.
What sort of hurdles do you face with regard to awareness and timely treatment? Do parents readily accept the course of treatment recommended?
We have thousands of families coming to us with children who have CHD. The Indian government’s health ministry declared this to be the commonest defect at birth among newborns. But, 10 years ago, we did not have a single dedicated child heart centre in the entire country. That was our point of entry in 2012. We wanted to make a difference by addressing a problem that was being largely unaddressed.
However much we have to spend — and the fact is we do — we consider it an opportunity of investment to save a child’s life.”
Those coming to Sanjeevani today are children who already have CHD. At this point you cannot talk preventive healthcare to the family; you have to cure the child. Since it begins with the foetus and the pregnant mother, we have now ventured into maternal and child health as well.
Universal screening is a distant dream in India due to the lack of equipment and skilled professionals. Foetal echocardiography, one of the best methods of detection, is available only to a fortunate few who can afford it. At Sanjeevani we do these free of cost.
How did SSSSH come to be set up in Raipur?
In 2011, I went around the country meeting people from the medical fraternity to understand the space where a new movement could be started. Two sides of the picture emerged for children with heart problems: there was preventive healthcare, or detection and screening, and then there was the curative.
A model then came to my mind. I ran this by a friend, an eminent cardiac surgeon, who advised me to embark on a rural child healthcare programme. So that’s how we came into this space. But it was my founding father, Bhagwan Sai Baba, who guided me to go to Chhattisgarh.
The state, as you know, is largely rural and tribal. It has its own challenges and is disturbed for many reasons. People asked me to rethink my decision about Chhattisgarh but I was on a divine directive. We set up the Sanjeevani Hospital in Raipur in less than a year. It’s a state-of-the-art, heart-shaped hospital, something uncommon in hospital design. Today that’s a distinctive feature of all Sanjeevani centres.
What makes the Sanjeevani model unique?
I’d like to answer that in two parts. Health is not about going to hospitals; it is about promoting wellness. This encompasses the first, which is about preventive, promotive and educative measures of healthcare, training and skilling. The second part is curative healthcare. These are our verticals of work at Sanjeevani.
In the curative part, after you open a hospital you cannot immediately talk about prevention and education. When you have a large number of children with CHD, you need to cure and serve. You can’t talk about health policy to a dying man; you need to treat him first.
We began from there and decided to ensure healing and care to everyone. Further on, learning, teaching and training became integral parts of the process. We had to integrate with the healthcare system of the state and find the best cardiologists, anaesthesiologists, intensivists and nursing staff to provide quality curative care. A year later we added a centre for research into CHDs in Palwal, Haryana.
A newborn can only cry when it is in pain, and children cannot fend for themselves, so you have to be two steps ahead when treating them.”
Healthcare is viewed as a budgeted expense by a family. But as a healthcare provider your approach needs to be different: from seeing health as an expense to making it an investment. However much we have to spend — and the fact is we do — we consider it an opportunity of investment to save a child’s life.
There are multiple gains to be had from such thinking. You have given goodness and gratitude to the child and the family, and that explains how Sanjeevani has grown from a child heart hospital into an integrator of goodness in the community. We are more than a child heart hospital; we are a public service institution making a contribution to national development.
Your hospitals famously have no billing counters…
Initially there was doubt about whether we could do this and, if so, for how long. We didn’t have all the answers but we believed that if we could save one dying child today, we would be able to save a hundred kids next year. That is the power of free-of-cost treatment. We at Sanjeevani do not distinguish by economic status in patients. It is inhuman to allow a child from a poor family to die in front of your hospital gate for lack of money.
You do have to incur hefty expenditures to provide such free-of-cost treatment. Where do you get the funds for that?
Volunteerism is the bedrock of our functioning. We do not receive salaries and everything that comes in is spent on healthcare. Much of our work begins with personal contributions, and a small circle of contributors has grown into a much larger one today. Also, while we try to bring awareness about the work we do, we don’t solicit funding.
Normally Sanjeevani is discreet in accepting funding from the government, but if you go to a district or a remote region you have to first align with the government system there.
Of late corporates have begun to see us as a partner of integrity, engaged in community development. Many of them have invested in our ‘gift of life’ programme, where donors can give anything between 125,000 and 500,000. We are also seeing a steady increase in overseas entities willing to fund our programmes.
The poorest and most remotely-located communities are often the most underserved. What can India do to address this issue?
While the southern states are better placed in terms of education and healthcare institutions, north and central India have fewer pockets of excellence. Today, when healthcare is viewed as a business, new opportunities tend to converge in geographies where — in the name of high-quality or specialised care — you serve the community but you also serve a financial goal.
Congenital heart ailments directly connect us to pregnant women and adolescent girls and their nutritional issues, which, in turn, is affected by their poverty. Sanjeevani has embarked on a concept of mother and child health which will commence with 10 hospitals located in the underserved parts of India. I believe that a hospital is not a place to go only when you’re sick; it can also be a wellness centre. Our fundamental approach is to ensure that our patients stay well and never have to visit a hospital. It’s good to build hospitals but not to go to them.
India ranks among the highest in the world in heart attacks and heart diseases, both in children and adults. How can we manage this better?
There’s a world of difference between paediatric congenital problems and adult congenital problems. A newborn can only cry when it is in pain, and children cannot fend for themselves, so you have to be two steps ahead when treating them. While adult and paediatric cases need be to addressed differently, the skew today is heavily in favour of adult diseases. Far more needs to be done in paediatric and maternal and child health.