India’s children and the grim reality of congenital heart diseases

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With over 240,000 children born every year with a hole in their tiny hearts, congenital heart disease (CHD) is by far the most common birth defect in India. The disease, while treatable, still results in thousands of deaths across the country, with over 20% of the children afflicted with CHD dying in the first year of birth.

There are over 150 types and manifestations of CHD, and a hole in the heart is just one of them. An estimated 9 out of every 1,000 children are born in India with this disease.

Most pregnant mothers in rural India, and those belonging to financially poor families in cities, do not have access to quality antenatal scans which detect CHD during pregnancy.

And when the child is born, most primary health centres and government hospitals have few trained paediatricians to meet the caseload. In backward and rural districts, especially in populous northern states, the standard of pediatric cardiac care falls woefully short.

Unless the child develops severe symptoms such as recurring pneumonia, or failure to thrive, parents don’t visit a paediatrician who can identify the underlying cause and refer the child to a paediatric cardiologist for echocardiography — the test to determine CHD.

This gaping hole in medical resources and infrastructure — and highly expensive treatment — have led to an estimated two-plus crore people living with a “hole in their heart”.

While in a small proportion of cases, the structural defect like a hole in the heart closes on its own as the child grows. In others, the child needs an intervention which can be either an open heart surgery or a cath intervention such as device closure.

Paediatric cardiac surgery is a less practised speciality even in multi-speciality hospitals, and is overshadowed by adult cardiac surgical programmes in these hospitals. There are less than 200 dedicated surgeons, anaesthetists, and cardiologists, in the paediatric cardiac field who address this humongous national burden.

Government centres face a long waiting of 2-3 years, and poor patients are unable to afford to go to private hospitals where it can cost anywhere between 2-8 lakhs based on the complexity of the case. Moreover, congenital heart defects are not covered by insurance policies.

The government, through Health schemes such as Ayushman Bharat and Rashtriya Bal Swasthya Karyakram, has been trying to support the poor, but a lot more needs to be done. The problem of accessibility, availability, and affordability has led to a rise in CHD as a cause of child mortality in India.

Causes of CHD are multifactorial. They may emanate because of the genes of the parents or may be a reaction to the environment the mother is nurturing for the foetus during pregnancy. Factors usually are both genes and the environment. Malnutrition in pregnant mothers, folic acid deficiency, and viral infection during the first three months of pregnancy, medication such as antiseizure medicines or acne medicine (isotretinoin), alcohol consumption, and smoking are some of the environmental factors associated with the aetiology of CHD.

Common symptoms of CHD are rapid heartbeat, rapid breathing, swelling of the legs, failure to thrive, extreme tiredness and fatigue, a blue tinge to the skin, lips, nails (cyanosis), feeding difficulty, low birth weight, delayed growth, and chest pain.

A child suffering from CHD devastates the whole family. Recurring hospitalisations due to fever and pneumonia in the early years become a huge financial and emotional burden for the family. Treatment in a private hospital means taking on a huge debt that takes a lifetime to pay off or a distress sale of jewellery and in some cases as well.

Symptoms of CHD often lead to a child being unable to go to school, grow at par with their peers, and lead to low self-esteem. This also affects the finances available for the growth and education of other siblings. In many cases, the child’s mother is subjected to mental trauma by the family, as she is blamed for bearing a child with a heart defect. And the larger economic disadvantage is that society is robbed of a healthy productive population.

Early detection and intervention are key initiatives in reducing this national burden. A robust antenatal care programme and awareness of good maternal health and nutrition will go a long way in reducing the incidence of this problem.

Skill development programmes and capacity-building in paediatric cardiac care on a large scale can positively impact outcomes in CHD.

CHDs are treatable, and if diagnosed and rectified in time, the child can lead a normal life with a normal life expectancy. As we recently observed World Heart Day on September 29, we hope that every child born with heart disease is given access to timely medical care and an opportunity to grow in leaps and bounds.

Dr Subramanian C is director, Sri Sathya Sai Sanjeevani International Centre for Child Heart Care and Research, Palwal, Haryana

The views expressed are personal

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