The lack of experts and infrastructure in the government and private sectors in India is hindering the future of children with congenital heart disease.
The lack of experts and infrastructure in the government and private sectors in India is hindering the future of children with congenital heart disease.
It is overwhelming for parents to say that their child may have a heart defect. It is even worse when the child does not receive timely treatment due to the lack of pediatric care around the home.
Congenital heart disease (CHD), which the Centers for Disease Control and Prevention (CDC), Atlanta, US, considers the most common congenital disorder, accounts for 28% of all congenital birth defects, and 6%–10. % of all infant deaths in India.
Pediatricians say that timely medical intervention can save 75% of these children and give them a normal life. In the absence of a national policy for the treatment of heart diseases in children, a large number of children remain outside the scope of treatment. It is estimated that more than 100,000 children are being added to the existing pool of children awaiting surgery.
According to the Pediatric Cardiac Society of India (PCSI), the prevalence of congenital heart anomalies is one in every 100 live births; Or an estimated 200,000 babies are born with CHD each year. Only 15,000 of them get treatment. At least 30% of babies with complex defects require surgical intervention to survive by their first birthday, but only 2,500 operations can be performed each year. A prominent case is that of the All India Institute of Medical Sciences (AIIMS), where infants are on the waiting list for cardiac surgery by 2026.
A disturbing notion, the ground reality
A retired health bureaucrat says there has been more neglect and little improvement in child health care because creating a comprehensive pediatric cardiology care service is generally considered economically impractical – it is resource intensive and requires infrastructure investment. Which politicians and policy makers choose to avoid.
There are 22 hospitals and less than 50 centers in India providing infant and neonatal cardiac services. Geographically, these centers are also not well distributed. The 2018 Department of Cardiology report from AIIMS explains how these centers account for 70% of South India; Most centers are located in areas with a low burden of CHD. For example, Kerala has eight centers offering neonatal cardiac surgery for an estimated 4.5 lakh annual deliveries. Population Uttar Pradesh and Bihar do not have a center capable of performing neonatal heart surgery with an estimated annual delivery of 48 and 27 lakh births per year respectively (Census of India, 2012).
It taxes the weak and marginalized
Only 250 pediatricians are available in 600 districts with 1.4 billion population. The doctor-patient ratio is extremely low for a population of half a crore. According to the Annals of Pediatric Cardiology journal, there were 2,966 pediatricians in the United States in 2019 — a ratio of one per 29,196 population. The burden of CHD is high in Jammu and Kashmir, Himachal Pradesh, Jharkhand, Punjab, Odisha (other than UP and Bihar), but there are no pediatricians in the government sector. There are four pediatricians in 38 government hospitals in Delhi. Now, Jaipur (Rajasthan), Raipur (Chhattisgarh), Coimbatore (Tamil Nadu), Madurai (Tamil Nadu), Bhubaneswar (Odisha), Palwal (Haryana), Indore (Madhya Pradesh), are on the map of Pediatric Cardiovascular Care, But largely in the private sector.
Apart from the low number of pediatric cardiologists and cardiac surgeons and critical care centres, poverty is another barrier to treatment. Moving sick newborns from states with little or no heart care facilities to distant centers for accurate diagnosis and treatment places a financial burden on parents.
It is not only affordability but also inaccessibility that hinders pediatric services. In addition, there is a non-availability of vital equipment that is required for the diagnosis of heart diseases in the unborn. The general lack of awareness among parents about the early symptoms of CHD is compounding the problem.
Prenatal check-ups are important
Child Heart Foundation, a non-governmental organization working in Siliguri (West Bengal), Jalandhar (Punjab) and Delhi, with underprivileged children with CHD, is flagging the need for fetal echocardiography.
Pediatricians say that prenatal detection of congenital anomalies is important for the care and management of the newborn. But some congenital defects, such as heart health, may not show up in a normal ultrasonography of the unborn child. Fetal echocardiography performed in a pregnant woman between 18 and 24 weeks pregnant allows a better visualization of the structure and function of the heart. There are exemplary programs like Kerala’s ‘Hridayam (for small hearts)’ which aims at early detection, management and assisting children with CHD or Tamil Nadu Chief Minister’s Comprehensive Health Insurance Scheme, which offer free special surgeries .
The Rashtriya Swasthya Suraksha Yojana (Ayushman Bharat) is expected to help 10 crore poor families financially, but it is yet to be launched. As of now, Maharashtra, Karnataka, Gujarat and Andhra Pradesh are clearly going.
“Pediatric cardiology is not a priority area in the face of competing demands for resources”, said a 2018 article in the Cardiothoracic Cardiology Department of AIIMS.
Nothing seems to have changed, and as another World Heart Day (September 29) has passed, we need to act fast to help India’s many needy children.
soma.basu@thehindu. co.in