‘We have one in every hundred children being born with congenital heart disease’

The estimated number of children born with congenital heart disease in India is more than 2 lakh per year. Dr Prabhatha Rashmi, HOD- Pediatric Cardiac Surgery with Sri Sathya Sai Sanjeevani Hospital, Kharghar, Navi Mumbai in interaction with Sanjiv Das, elaborates more on the causes and preventive measures

What is India’s burden in congenital heart disease?
Globally 8-10 in every 1000 live births have congenital heart disease. In India, we have one in every hundred children being born with congenital heart disease. Estimated number of children born with congenital heart disease in India is more than 2 lakh per year. Amongst these, 20 per cent are born with critical heart diseases, meaning they need some form of intervention within the first month of life for survival. Amongst the remaining 80 per cent, we have major heart diseases which have to be addressed by one year of age and the remaining electively as per guidelines. A sizeable number of older children who survive despite not being treated add to the burden of CHD annually.

What are the main causes of congenital heart disorder? Are there any genetic causes?
The cause of congenital heart disease is multi-factorial. Genetic factors play a role and they can be syndromic or chromosomal. Consanguinity (ancestry) plays a role too. We also have environmental causes such as maternal infections like rubella, medications that mothers may take during their pregnancy for conditions like epilepsy, maternal diseases like diabetes and advanced age of parents.

What are the preventive measures?
We can adapt certain preventive measures such as appropriate pre-conception counselling to young couples, foetal echo screening especially for families with a history of CHD and babies conceived through assisted reproductive techniques. Also, modify the treatment of systemic diseases in pregnant mother like changing over to safer drugs. Mass immunisation against rubella should be considered. Nutrition is being recognised as a contributor for a healthy baby and mothers must take supplements such as folic acid and iron, and in addition, many more micronutrients have to be introduced into the diet of women of pre-conception age and pregnant mothers. Acknowledging the correlation between higher birth order ((i.e. 3rd or 4th born child upwards) and congenital heart disease will help in the prevention of such defects. Screening of all new-borns and infants for CHD, awareness building amongst the general public through social media and amongst physicians and paediatricians through periodic education will also help.

Affordability is a major concern during heart surgeries. How can the cost factor be tackled in a country like India?
Currently, we have between 60-70 centres in the country doing paediatric cardiac procedures. These centres are catering to approximately 27,000 patients annually with CHD. A vast majority still needs to be attended to. Though paediatric cardiac care has improved in India, still much needs to be done. Medical insurance companies don’t cater to congenital heart diseases. Government of India through various schemes are addressing the affordability issue and has come up with schemes such as Ayushman Bharat, Rashtriya Bal Swasthya Karyakram etc. Many states have devised novel schemes like the Yeshashwini scheme in Karnataka. This is a micro-insurance scheme wherein every member of the group pays a small amount towards building a corpus which is in turn used to fund surgeries.

Other states also have similar schemes. Andhra Pradesh offers Arogyasri scheme, there is the Hridayam initiative of Kerala, and the state of Maharashtra is catering to children with congenital heart diseases through Mahatma Jyotiba Phule Jan Arogya Yojana. It is just that the burden is so huge that it looks insufficient. Organisations like Sri Sathya Sai Sanjeevani with whom I am associated, are offering treatment to CHD children absolutely free of cost. This is a model which has to get popular and such centres should work alongside our government and strengthen the system. I also see many corporates and philanthropists in Mumbai coming forward to help these children. Heart to Heart foundation led by cricket legend Sunil Gavaskar is one such organisation supporting surgeries of children suffering from CHD from poor families. I think this is the way forward.

What can be done to reduce this burden?
Various aspects have to be considered if we want to reduce this burden. A comprehensive approach to maternal and child health care should be embraced. Frontline health workers should be trained to work at grass root levels to aid earlier detection of congenital heart defects and also to care for operated patients after they return to their homes. Currently, only a minority of children are able to access advanced cardiac care due to geographic and financial factors. Most of the centres that have come up in India are in the bigger cities and in the private sector. If these centres are spread across the country it will avoid long travels and stay in unfamiliar states and cities to the families of patients.

Government and charitable organisations should take the lead so that these facilities can be accessed on the lower socio-economic strata. Another obvious way out is to increase the number of such centres in India. This requires specialised manpower in the form of trained surgeons, cardiologists, anaesthesiologists, intensivists, perfusionists, nurses and much more paramedical staff which constitutes a team. Training programmes have to be launched to train and send back these teams to second-tier cities to set up units which can cater to basic paediatric cardiac care. Investing in research and development is also an important facet in reducing the burden. More work needs to be done to establish the genetic cause of CHD. Developing and manufacturing cardiac care equiangular consumable, our country can significantly cut down operating costs.

What percentage of surgeries are successful. Post-surgery, what percentage of children can lead a normal life?
Going back to the break-up of congenital heart diseases, I mentioned 20 per cent to be critical and they have 75-80 per cent chances of survival after surgery. We may perhaps be able to improve the outcomes with earlier detection, safe and timely transport of these new-borns to tertiary care centres and gearing up the infrastructure to cater to the complexity of these defects. The remaining 80 per cent of the children are currently being operated at less than one per cent mortality. Yes, with continued care in the post-operative phase, we can have most children leading normally to near-normal lives after open-heart surgeries.

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