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DoctorSpeak: Our medical advisory board shares their insights on Pediatric Cardiology

We introduce to you three remarkable doctors on our medical advisory board – Dr K Shivaprakash, Dr KS Dagar and Dr Krishna Kumar.

They share with us their views and knowledge on the state of pediatric cardiology in India. Such first-hand insight has opened our eyes in many ways. On one hand, it is obvious that the situation is dire and there is a lot to be done as we are paving a way every single day to Save Little Hearts. On the other, it is important to understand the task ahead of us. Knowledge is power, and in the fight to save many more hearts, we need all the power we can get!

The little hearts that we treat every month, and the child care that these doctors and partner hospitals have been able to provide are the backbone of our foundation.

What is the state of pediatric cardiology in India and how does it compare with the rest of the world (developed and developing)?

Dr K Shivaprakash: Approximately 1,80,000 congenital heart surgeries are annually required to be done and currently our country does only 25% of these numbers due to various shortcomings. But perhaps the most important shortcoming is lack of early diagnosis and management as most of the time defects are not diagnosed due to socio-economic reasons in the interiors of our country. Some of the large states don’t even have a single exclusive programme for congenital heart defect, though that is the need of the hour. The best yardstick of the successful social welfare story of any nation is how it takes care of children. Unfortunately, we fall behind the desired target by few hundred yards by any standard.

The Pediatric Cardiac Society of India (PCSI) was set up two decades back with the aim of empowering the nation by increasing the training platforms for these specialities. It is also striving hard in disseminating the knowledge about ways to diagnose these defects and how best to address them. Thanks to the efforts of the founders of this society, the training programmes in India have now trained a substantial number of pediatric cardiologists and most of them have chosen to remain in the country to serve the nation. In addition, the public health insurance programmes are also facilitating large numbers of procedures for several states. Today, India performs approx. 75,000 congenital heart surgeries. Though it is still lesser compared to the number of children requiring them, it still remains a substantial accomplishment considering the number of programs in the country.

Dr KS Dagar: Over the last two decades major strides have been made in the management of children with congenital heart defects. The surgical outcomes are at par with the best overseas centres. This is coupled with earlier diagnosis and greater availability of foetal echocardiography. Not only that, there has been a slow but steady increase in the numbers of centres where state-of-the-art facilities exist. However, given the magnitude of the problem, much more needs to be done.

Dr Krishna Kumar: CHD affects nearly 1% or about 40,000 births per year in the US. It’s the most common form of birth defect, occurring each year in about 40,000 babies in the US. In India, between 200,000 to 250,000 children are born each year with CHD and 70,000 are diagnosed with critical CHD. It is the common cause of infant mortality in states like Kerala, Tamil Nadu, Goa and Maharashtra. It can be estimated that only 10% of children with heart disease receive timely attention in the entire country, and this situation is a lot worse in North and East India as 90% of the children there are unattended. These children either die prematurely or become inoperable with severe pulmonary hypertension and other disabling consequences of uncorrected CHD.

Pediatric care in India has advanced impressively in terms of quality of care in selected institutions and the number of new centres that have the capability for infant and new-born heart surgery. However, the collective capacity for pediatric heart care in the country falls woefully short of the overall national requirement. It is currently estimate that there are less than 50 centres in India with the capability of infant and new-born open-heart surgery and the shortfall in an actual number of centres is in excess of 500 centres. An equally important consideration is the fact that pediatric heart programmes are not distributed in accordance with geographic needs, they are largely clustered in Southern and Western parts of the country and in metros.

In your opinion, what is the biggest challenge in treating children with CHD in Indian hospitals?

Dr KS Dagar: The lack of awareness and financial constraints are probably the main stumbling blocks.

Dr Krishna Kumar: Very few of the existing pediatric heart centres in India can be considered truly comprehensive by prevailing western standards. Almost all programmes are working to full capacity in the face of a shortfall of human and material resources and limitations in infrastructure. Most programmes are forced to share resources with busy adult cardiac programmes without which they would not be economically viable. The most serious deficiencies are in nursing, intensive care physicians and dedicated pediatric heart surgeons with the capability to perform infant and new-born cardiac surgery. There is also a serious lack of ability to provide timely diagnosis and referral and general awareness of the magnitude of the problem among the primary health care professionals, resulting in late presentation, or often, untimely death. Another most critical challenge for families is cost. While there is no concrete data available assessing the cost, an average surgery costs between 1-3 lakhs, which is beyond the capacity of most families. There is also a wide gap in funding and assistance for this cause – there are very few NGOs that provide assistance for kids born with CHD.

What can a) the medical fraternity, b) the civil society, and c) we, as individuals can do to help alleviate or at least manage the situation?

Dr K Shivaprakash: The pediatric cardiac community still requires tremendous support from the policy makers, philanthropists, media and public at large to ensure that each and every child in India gets the required care regardless of the hurdles, be it social, economic and structural malformations. It is imperative that work continues at exponential pace without losing momentum for the next ten years so that we achieve the goal of normal heart for all kids by 5 years of age.

Dr KS Dagar: The medical fraternity can possibly drive programmes and lobby with the government and other institutions to make it a focus area, increase public awareness, foster training programmes and research initiatives and evolve low cost alternatives. As individuals, to help and manage the situation, we can form support groups, make contributions financially and spread awareness about the good, long-term results.

Dr Krishna Kumar: There is a need to bring together key stakeholders that should include representatives of the Pediatric Cardiac Society of India, Medical Council of India, and National Board of Examinations, the Ministry of Health to a common forum and discuss the specific modalities towards building capacity in pediatric heart care in India. Dedicated Departments of Pediatric Cardiology and Pediatric Cardiac Surgery need to be established in leading academic medical institutions of the country in the government sector. Over the next several years, there should be a plan to initiate pediatric heart programmes in more and more medical colleges in India in a carefully planned fashion with a view to build substantial capacity for pediatric heart care in the country. A mechanism should be created to encourage and nurture private and charitable institutions with pediatric heart programmes to develop training programmes for specific categories of physicians, nursing, and allied professional streams.

Given the current challenges, universal coverage for children with heart disease in India may appear like a distant dream. Nonetheless, this may be the most worthwhile dream to pursue for the pediatric cardiac fraternity. We can only claim to have truly progressed when the average child born in India with heart disease has access to comprehensive pediatric cardiac care. The reputable doctors on our medical board have been with us on our journey to Save Little Hearts, and their insight paves a way for us to do our work more efficiently… understanding pediatric cardiology in India makes us understand little hearts, and the urgency of child care required to fight this disease.