LEARN ABOUT CONGENITAL HEART DEFECTS

• Congenital heart defect (CHD) is the most frequently occurring congenital disorder.
• The common types of Congenital Heart Defects are Patent Ductus Arteriosus, Atrial Septal Defects, Ventricular Septal Defects, Tetralogy of Fallot, Total Anomalous Pulmonary Venous Connection, Transposition of Great Arteries, Ebstein’s Anomaly, Aortic Arch Repair & Coarctation, Truncus Arteriosus, Heart Block, AV canal defect, AP Window, Double Outlet Right Ventricle, Truncus Arteriosus, Hemitruncus, Taussig-Bing Anomaly, Coarctation of Aorta and Pulmonary Atresia.
• With rapid advances in diagnosis and treatment of CHD, vast majority of children born with CHD in high-income countries reach adulthood
• However, this is not the case for children born in low-and middle-income countries (LMIC) as such advanced care is not available for all children
• Considering a birth prevalence as 9/1000 the estimated number of children born with CHD every year in India is more than 200,000 per year
• Of these, one-fifth are likely to have serious defect, requiring an intervention in the first year of life
• Currently advanced cardiac care is available to only a minority of such children
• A number of cardiac care centers have come up in India over the last decade
• The total number is just over 60; ten of these can be considered high volume centers (more than 500 cardiac surgeries per year)
• However, most are in the private sector and are not geographically well-distributed
• The total number of births are much higher in North and Eastern parts of India as compared to rest of four regions (Southern, Western, Central and North-East)
• Consequently, the total number of babies born with CHD are likely to be much more in regions with high birth rates
• Based on the information provided by 47 centers in India, there is a clear paradox as many centers are locate in regions with lower burden of CHD
• Pediatric cardiac care is a team effort involving cardiologists, surgeons, anesthesiologists and intensive care specialists

• A substantial proportion of births in India occur at home, and the infant is likely to die before the critical, ductus-dependent CHD is diagnosed
• Frontline health workers and primary caregivers are not sensitized to the problem of CHD
• A number of them believe that a child with CHD is doomed and will never be able to lead a fruitful life, even if intervened
• The resources for treatment of CHD are not only inadequate but also seriously maldistributed
• Poverty, which is the greatest barrier to successful treatment of CHD is more common in states with little or no cardiac facilities
• In most instances, families are expected to pay for the treatment out of their pocket, which they can barely afford
• Approximately half of the families borrowed money during the follow-up period after surgery
• Many families lose their wages as they are away from work during care of these children
• Most cardiac centers, especially that set-up more recently, are in the private sector and may not be affordable for the majority
• Many hospitals partner with charitable non-government organisations and multinational companies to assist economically weaker families
• About 20% of cardiac surgeries are funded by such organisations
• Most children with CHD, including those who have undergone an intervention, require long-term care for a good outcome which includes follow-ups as advised.
• Unfortunately, a large number of children in India, especially those from middle or lower socioeconomic strata, are lost to follow-up due to financial hurdles or lack of awareness

• Fortunately, the rate of hospital deliveries has significantly increased due to several incentivized schemes by the Government of India
• To make meaningful reductions in mortality and morbidity from CHD, it is imperative to focus on comprehensive newborn and infant cardiac care
• Establishing more centers for cardiac care with sophisticated technology and a motivated team of health professionals
• There should be at least one center in each populous state, so that families do not have to travel long distances to places with different local environments and languages

Reference: SAXENA, A. Congenital Heart Disease in India: A status report, Indian Pediatrics 2018, Volume 55, p.1075-1082p.1075-1082