Considering a birth prevalence of congenital heart disease of 9/1000, the estimated number of children born with congenital heart disease in India is more than 200,000 per year. Of these, about one-fifth are likely to have serious defects, requiring an intervention in the first year of life. Currently, advanced cardiac care is available to only a minority of such children. Several cardiac centres have been developed over the last 10 years.
However, most are in the private sector and are not geographically well-distributed. Challenges to pediatric cardiac care include financial constraints, health-seeking behaviour of the community, and lack of awareness. The government of India is taking a few steps for improving the health of children through its various programs and schemes that are likely to benefit children with congenital heart disease, especially those who are vulnerable and marginalized.
Congenital heart disease (CHD) is the most frequently occurring congenital disorder, responsible for 28% of all congenital birth defects. The birth prevalence of CHD is reported to be 8-12/1000 live births. Considering a rate of 9/1000, about 1.35 million babies are born with CHD each year globally.
Considering a birth prevalence of 9/1000, the estimated number of children born with CHD every year in India approximates 240,000, posing a tremendous challenge for families, society, and the health care system. This article discusses the current state of cardiac care available to children with CHD and how it has changed over the last decade.
Most studies reported from India are on prevalence at a given point of time, and not on prevalence at birth. Many reported studies are based on data from pediatric patients reporting to hospitals leading to a possible sampling bias [9-14]. The profile of patients with CHD that present to healthcare facilities in LMIC is largely determined by the natural history of individual conditions. A high attrition of patients with serious CHD results in a low frequency of these lesions encountered in hospital settings and may contribute to the prevailing perceptions of their rarity.
Current Status of Care in India
Of the 240,000 children born with CHD each year in India, about one-fifth would need early intervention to survive the first year of life. A large pool of older infants and children who may have survived despite no intervention adds to the burden of CHD.
Status of Care for Serious CHD
A number of cardiac care centers have come up in India over the last decade. The total number approximates 63; ten of these can be considered high-volume centers (more than 500 cardiac surgeries per year). As per data provided by all large and medium-volume centers and a majority of small-volume centers, a total of approximately 27,000 patients with CHD underwent cardiac surgery over a one-year period (2016-2017). Of this, about 9,700 patients were infants (<1 year), and about 1700 were neonates (<1 month). Considering the birth prevalence of serious CHD (requiring intervention in the first year of life) as 1.6/1000 live births, about 43,000 babies are born in India every year with serious CHD, of which only about one-fourth seem to be receiving optimal cardiac care.
Obstacles to Pediatric Cardiac Care in India
Lack of awareness and delay in diagnosis: 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. Fortunately, the rate of hospital deliveries has significantly increased due to several incentivized schemes by the Government of India. Ductus-dependent CHD may still escape detection as babies are often discharged earlier. Pre-discharge screening of newborns by pulse oximetry, which may pick up these CHDs, is often not practiced, especially in rural and semi-urban centers.
Maldistribution of resources: The resources for the Congenital Heart Disease Treatment are not only inadequate but also seriously mal-distributed. As mentioned earlier, the geographical distribution of these centers is very uneven. Poverty, which is the greatest barrier to successful treatment of CHD is more common in states with little or no cardiac care facilities. Transport of newborns and infants with CHD is another neglected issue in India. There is practically no organized system for safe transport of newborns and infants with CHD.
Financial constraints: Medical insurance is practically non-existent in India, especially for birth defects. In most instances, families are expected to pay for the treatment out of their pocket, which they can barely afford. In a study from Kerala, surgery for CHD resulted in a significant financial burden for the majority of families. 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 the care of these children
According to data collected from 47 centers in India, about 35% of cardiac surgeries are funded by families themselves. Government schemes, mostly at the state level, cover about 40% of all surgeries for CHD patients. Many hospitals partner with charitable non-government organizations like Children Heart Foundation, and multinational companies to assist economically weaker families. About 20% of cardiac surgeries are funded by such organizations.
Health-seeking behavior of the community: Often the parents seek medical care only when the child develops significant symptoms. This may not be only due to financial constraints. Local religious and socio-cultural practices in India affect the level of care received by children with CHD. Illiteracy 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.
Lack of follow-up care: Most children with 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 socio-economic 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.
Other factors: Investment in healthcare is one of the lowest in India when compared with several other countries, including many LMICs. There is no national policy for CHD. 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 the cardiac care of children with CHD.
Strategies for Improvement of Cardiac Care
To make meaningful reductions in mortality and morbidity from CHD, it is imperative to focus on comprehensive newborn and infant cardiac care. However, improvements in maternal and child health services must occur simultaneously. Health is a state subject and the various states of India differ vastly in their economy, literacy levels, population, languages, cultural beliefs, and human development indices. This regional diversity makes the task more difficult as the ‘one size fits all’ approach is not tenable.
Increasing awareness: The community needs to be sensitized to the problem of congenital defects, through electronic and print media. Targeting pediatricians and educating them not just about diagnosing CHD in a newborn, but also about the advancements that have occurred in the care of children with CHD should also be helpful.
Preventive measures and screening: So far, little emphasis has been placed on preventive measures for CHD. This needs to be stressed as the investment required is much smaller. Mass immunization against Rubella should be the starting point at the national level. Although one can have a specific preventive program for children with CHD, a more comprehensive program that caters to the well-being of children in general and incorporates a number of other common disorders is more likely to be sustainable.
Geographic distribution of centers of excellence: Establishing more centers for cardiac care would be ideal, but this is a very challenging task. One not only needs sophisticated technology and infrastructure but also a motivated team of health professionals. Pediatric cardiac care is a team effort involving cardiologists, surgeons, anesthesiologists, and intensive care specialists.
Prioritization of care: A contentious issue is prioritizing CHD care for those cases that are ‘one-time fixes’ with good long-term outcomes over those with complex CHD requiring multistage, often palliative surgeries with suboptimal long-term survival. This issue gains importance because of the enormous burden of CHD in India and the availability of limited facilities for their management. The denial of cardiac surgery to children with complex CHD and single ventricle physiology (e.g., heterotaxy syndromes) and to those associated with significant extra-cardiac malformations is for efficient resource utilization in a resource-constrained setting. Such decisions can be challenged and are best taken in consultation with parents.
Providing financial support for treatment: A number of financial models are supporting healthcare in India. Many of them cater to children and cover for CHDs. Some of the private hospitals support patients utilizing funding from corporate social responsibility programs. Payment is sometimes linked to the patient’s capacity to pay, helping to subsidize services for poorer patients.
Conclusion
The care available for children with CHD is vastly different in MIC, including India, from that in high-income countries. A large proportion of children with CHD go undiagnosed and untreated in India due to the large numbers and limited resources. A significant amount of progress has been made in India in the management of children with CHD over the last three decades, but it remains grossly inadequate. Interactions with paediatricians and other front-line health staff are necessary to improve the overall outlook for children with CHD.