It is overwhelming for parents to be told that their child may have heart defects. It is worse when the child does not get treated in time due to lack of paediatric cardiac care in the vicinity of his/her home.
Congenital Heart Disease (CHD), which the Centers for Disease Control and Prevention (CDC), Atlanta, U.S., acknowledges to be the most common congenital disorder, is responsible for 28% of all congenital birth defects, and accounts for 6%-10 % of all the infant deaths in India.
Paediatricians say timely medical intervention can save 75% of these children and give them normal lives. The lack of a national policy for the treatment of cardiovascular diseases in children keeps a huge number outside the ambit of treatment. It is estimated that over 1,00,000 children keep getting added to the existing pool of children awaiting surgery.
According to the Pediatric Cardiac Society of India (PCSI), the prevalence of congenital cardiac anomalies is one in every 100 live births; or an estimated 2,00,000 children are born with CHD every year. Only 15,000 of them receive treatment. At least 30% of infants who have complex defects require surgical intervention to survive their first birthday but only 2,500 operations can be performed each year. A case in point is the premier All India Institute of Medical Sciences (AIIMS), where infants are waitlisted till 2026 for cardiac surgery.
A distressing perception, ground realities
A retired health bureaucrat says that there has been more neglect and little improvement in child health care because creating a comprehensive paediatric cardiology care service is usually considered economically unviable — it is resource intensive and requires infrastructure investment that politicians and policymakers choose to evade.
There are 22 hospitals and less than 50 centres in India with infant and neonatal cardiac services. Geographically, these centres are not well distributed either. A 2018 cardiology department report of AIIMS, highlighted how South India accounted for 70% of these centres; most centres are located in regions with a lower burden of CHD. For instance, Kerala has eight centres offering neonatal cardiac surgeries for an estimated 4.5 lakh annual childbirths. Populous Uttar Pradesh and Bihar, with an estimated annual childbirth of 48 and 27 lakh births per annum, respectively (Census of India, 2012), do not have a centre capable of performing neonatal cardiac surgery.
It taxes the vulnerable and the marginalised
For 600 districts with a 1.4 billion population, there are only 250 paediatric cardiologists available. The doctor to patient ratio is an abysmal one for half-a-crore population. According to the Annals of Pediatric Cardiology journal, the United States had 2,966 paediatric cardiologists in 2019 — a ratio of one per 29,196 population. Jammu and Kashmir, Himachal Pradesh, Jharkhand, Punjab, Odisha (besides U.P. and Bihar) have a higher CHD burden but do not have paediatric cardiologists in the government sector. There are four paediatric cardiologists for 38 Delhi government hospitals. Now, Jaipur (Rajasthan), Raipur (Chhattisgarh), Coimbatore (Tamil Nadu), Madurai (Tamil Nadu), Bhubaneshwar (Odisha), Palwal (Haryana), Indore (Madhya Pradesh), are on the map of paediatric cardiac care, but largely in the private sector.
Apart from the low number of paediatric cardiologists and cardiac surgeons, and critical care centres, poverty is another barrier before treatment. Transporting sick neonates from States with little or no cardiac care facilities to faraway centres for accurate diagnosis and treatment burdens parents financially.
It is not just unaffordability but also inaccessibility that constraints paediatric services. In addition, there is the non-availability of crucial equipment that is essential for diagnosis of heart diseases in the unborn. Accentuating the problem is the general lack of awareness about early symptoms of CHD among parents.
Antenatal checks are crucial
The Child Heart Foundation, a non-governmental organisation working in Siliguri (West Bengal), Jalandhar (Punjab) and Delhi, with underprivileged children with CHD, has been flagging the need for fetal echocardiography.
Paediatricians say antenatal detection of congenital anomalies is crucial for neonatal care and management. But certain congenital defects such as accurate heart health assessment are not visible in a normal ultrasonography of an unborn baby. Fetal echocardiography done in a pregnant woman of 18 to 24 weeks allows better visualisation of the structure and function of the heart. There are programmes worth emulating such as Kerala’s ‘Hridayam (for little hearts)’, aimed at early detection, management and support to children with CHD or the Tamil Nadu Chief Minister’s Comprehensive Health Insurance Scheme offering free specialised surgeries.
The National Health Protection Scheme (Ayushman Bharat), is expected to financially assist 10 crore poor families but has still to take off. So far, Maharashtra, Karnataka, Gujarat and Andhra Pradesh have apparently got going.
A 2018 article by the Department of Cardiothoracic Cardiology, AIIMS, states, “paediatric cardiology is not a priority area in the face of competing demands for the resources”.
Nothing seems to have changed, and as another World Heart Day (September 29) has passed by, we need to act fast to help India’s many children in need.