Indian children and the grim reality of congenital heart disease


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With over 240,000 children born each year with a small punctured heart, 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 more than 20% of children with coronary artery disease dying within the first year of birth.

There are over 150 types and manifestations of coronary artery disease, and a hole in the heart is just one of them. It is estimated that 9 in 1,000 children are born in India with this disease.

Most pregnant women in rural India and those from low-income families in cities do not have access to quality prenatal exams that detect coronary heart disease during pregnancy.

And when a child is born, most primary health centers and public hospitals have few qualified pediatricians to cope with the workload. In backward and rural districts, especially in populous northern states, the standard of pediatric cardiac care is woefully inadequate.

Unless the child develops serious symptoms such as recurrent pneumonia or stunted growth, parents do not see a pediatrician who can identify the underlying cause and refer the child to a pediatric cardiologist for an echocardiogram. – the test to determine coronary heart disease.

This yawning hole in medical resources and infrastructure – and very expensive treatment – has led around two million people to live 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 older. In others, the child needs an intervention which may be either open heart surgery or a catheter intervention such as closing a device.

Pediatric heart surgery is a specialty less practiced, even in multi-specialty hospitals, and is eclipsed by the adult heart surgery programs at these hospitals. There are less than 200 dedicated pediatric cardiac surgeons, anesthetists and cardiologists tackling this enormous national burden.

Government centers face a long wait of 2-3 years, and poor patients cannot afford to go to private hospitals where it can cost between ??2-8 lakhs depending on the complexity of the case. In addition, congenital heart defects are not covered by insurance policies.

The government, through health programs such as Ayushman Bharat and Rashtriya Bal Swasthya Karyakram, has tried to support the poor, but much remains to be done. The problem of accessibility, availability and affordability has led to an increase in coronary heart disease as a cause of infant mortality in India.

The causes of coronary heart disease are multifactorial. They can emanate from the genes of the parents or can be a reaction to the environment that the mother nurtures for the fetus during pregnancy. The factors are usually both genes and the environment. Malnutrition in pregnant women, folic acid deficiency and viral infections in the first three months of pregnancy, medications such as antiepileptics or acne medications (isotretinoin), alcohol consumption and smoking are some of the environmental factors associated with the etiology of coronary heart disease.

Common symptoms of coronary artery disease are rapid heartbeat, rapid breathing, swelling of the legs, stunted growth, extreme tiredness and fatigue, a blue tint of the skin, lips, nails (cyanosis), feeding difficulties, low birth weight, stunted growth and chest pain.

A child with coronary artery disease devastates the whole family. Recurrent hospitalizations due to fever and pneumonia in the early years become a huge financial and emotional burden on the family. Treatment in a private hospital means incurring a huge debt that takes a lifetime to pay or a distressed sale of jewelry and in some cases too.

Symptoms of coronary heart disease often prevent a child from going to school, growing up to par with their peers, and leading to low self-esteem. It also affects the finances available for the growth and education of other siblings. In many cases, the mother of the child is subjected to mental trauma from the family as she is accused of carrying a child with a heart defect. And the biggest economic downside is that society lacks a healthy, productive population.

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

Large-scale pediatric cardiac care skills development programs and capacity building can have a positive impact on coronary heart disease outcomes.

Coronary heart disease can be treated and if diagnosed and corrected on time, the child can lead a normal life with a normal life expectancy. As we recently celebrated World Heart Day on September 29, we hope that every child born with heart disease will have access to timely medical care and the opportunity to grow in leaps and bounds.

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

Opinions expressed are personal

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