Epidemiology of Congenital Heart Defects in India

9 in every 1000 kids.
More than 200,000 kids per year.
Over 70,000 with serious defects.

The data above is the prevalence of Congenital heart defects in children in India every year.

Owing to marked regional variation in population and birth rates, the total number of babies born with Congenital Heart Defects (CHD) are much higher in the Northern and Eastern parts of India: i.e. Delhi, Jammu and Kashmir, Punjab, Haryana, Himachal Pradesh, Rajasthan, Uttar Pradesh, Uttarakhand, Bihar, Jharkhand, Orissa and West Bengal compared to the Southern, Western, Central and North-Eastern regions.

Based on the information provided by 47 centers in India, there is a clear paradox:

• Most cardiac care centers are located in regions with lower burden of CHD.
• A child born in the Southern and Western states of India has a much greater chance of receiving adequate care & treatment than in states such as Uttar Pradesh, Bihar, Jharkhand and Madhya Pradesh, which have a much higher CHD burden.
• In contrast, babies born in Eastern, Central and North Eastern parts of India have a much lower chance of receiving an intervention.

Obstacles to Pediatric Cardiac Care in India

1. Lack of awareness and diagnosis delay:

• A substantial proportion of births in India occur at home.
• Primary caregivers are not sensitized to the problem of Congenital Heart Defects.
• Pre-discharge screening of newborns by pulse oximetry, which may pick up these heart defects, is often not practiced, especially in rural and semi-urban centers.

2. Inadequate distribution of resources:

• The geographical variation in the distribution of cardiac care facilities greatly contributes to the increased number of undiagnosed and untreated heart defects.
• Poverty, which is the greatest barrier to successful treatment of Congenital Heart Defects is more common in states with little or no cardiac care facilities.

3. Financial constraints:

• Medical insurance is practically nonexistent in India, especially for Congenital heart defects in children. In most instances, families are expected to pay for the treatment out of their pocket, which they can barely afford.
• Though several state government level programs, microfinance schemes, charitable and philanthropic organizations exist for the benefit of economically weaker sections of the society, awareness amongst community about such programs is very low.
• The number of public hospitals which provide care at a low cost are very few. Most cardiac centers, especially those that have been set-up more recently, are in the private sector and may not be affordable for the majority.

4. Social issues:

• Local religious and socio-cultural practices in India affect the level of care received by children with Congenital Heart defects. Parents seek medical care only when the child develops significant symptoms, and a number of them believe that a child with it is doomed and will never be able to lead a fruitful life, even if intervened.
• Low-rate of literacy may be partly contributing to such behavior.
• Gender bias, as prevalent in some societies, may put girls at a disadvantage compared to boys. In a study from a referral tertiary care center, girls were less likely to undergo cardiac surgery for CHD than boys.

5. Lack of follow-up care:

• Most children with complex CHD, including those who have undergone an intervention, require long-term care for a good outcome. Unfortunately, a large number of children in India, especially those from middle or lower socioeconomic strata, are lost to follow-up.
• The onus of follow-up is totally on the family of the affected child as our health system is not proactive despite having a network of primary health care units.

6. Other factors:

• Investment on healthcare is one of the lowest in India when compared with several other countries. There is no national policy for Congenital heart defects in children.
• Rapid population growth, competing priorities, inefficient and inadequately equipped infrastructure, and a deficit of trained staff at all levels of healthcare are some of the other major roadblocks to cardiac care of children with CHD.

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