By Mangesh Wange,
Namrata’s (name changed) mother vividly remembers the day five years ago, in 2017, when she found out that her seven-month old baby has a hole in her heart. As a young mother hailing from Shrivardhan in Raigad, it was the end of the world as she knew it- she thought she was going to lose her child. Learning of your child’s cardiac defect may be daunting, but often it is the lack of awareness that makes things seem bleaker than they are. After a successful heart surgery at Wockhardt Hospital under Swades’ Paediatric Cardiac Care Program, Namrata now lives like most children her age, with occasional complaints of cough.
The term ‘congenital’ means present at birth – any defect that is congenital therefore has the clock ticking on it already. Early detection is a game changer. Medical Journal of Indian Paediatrics suggests that 2,00,000 children are born with Congenital Heart Disease (CHD) in India every year. One-fifth of these are likely to be serious, requiring surgery within a year. The numbers reflect India’s genetic vulnerability to heart defects. According to cardiac experts, Indians are in fact, three times more prone to heart ailments than Americans or Europeans. Very often parents seek help when the child becomes less operable, thereby losing the battle unfairly. A simple way to ensure this is to facilitate institutional deliveries. When the baby is born in a medical centre, a limb saturation test if done right, has more than 95 percent chances of pointing to a congenital problem which can be later investigated in detail. While the National Family Health Survey suggests 88 per cent institutional deliveries in 2019-20, we must strive for each and every child to be born under expert medical supervision.
Cost is the next big deterrent. The number of public hospitals that provide low-cost healthcare are very few in the country. Given our population, getting access to the right help in such a scenario could take months or even years – losing out on time. Private hospitals of course are not affordable to the rural population and often not to the middle income groups in the cities either, given that most health insurance policies in our country do not cover congenital defects. Working as a strong network of stakeholders – parents of children suffering from CHD, non-profits, frontline workers, government bodies and conscious medical expert community and hospitals – is therefore the way forward.
In this context, the RBSK Rashtriya Bal Swasthya Karyakram is a novel initiative under which ANMs, multipurpose workers and local doctors are trained to go from school to school and look out for signs such as poor weight gain, repeated respiratory tract infections etc. They then make a list of these children and submit them to either a hospital that is on-board the program or to an upcoming local camp organised by the social sector in collaboration with partner hospitals. Local camps organised by Swades in partnership with hospitals such as Jupiter, Pune and Wockhardt have led to multiple successful surgeries in Raigad and Nashik districts. The key to making this nexus work is by dispelling the myths around CHDs at the first level. ASHA workers and frontline volunteers such as Swades Mitras play a huge role in counselling parents and encouraging them to seek help.
On the part of the state, the Janani Suraksha Yojana, Haryana government’s Janani Suvidha Yojana, Ayushmati Scheme in West Bengal and Chiranjeevi Yojana in Assam and Gujarat are designed to encourage institutional births and thereby detect early stage congenital defects.
The success of our and many more cardiac programs is testimony to the fact that timely intervention can help children with CHDs live fulfilling lives. Namrata, for instance who we referred to at the beginning of the article, is faring very well in class, making her parents hopeful of her going on to become a doctor or a police inspector. Namrata’s parents sought help. We as stakeholders in the future of our country – hospitals, social sector, parents, governments – should strive to make timely help accessible to all.
(The author is CEO, Swades Foundation. The article is for informational purposes only. Please consult medical experts and health professionals before starting any therapy, medication and/or remedy. Views expressed are personal and do not reflect the official position or policy of the FinancialExpress.com.)