Congenital Heart Defects - The 'Forgotten' Heart Disease

By Dr. Ganesh Kumar Mani in Cardiac Sciences

Feb 19 , 2024 | 4 min read

While we are all preoccupied with preventing and treating preventable heart disease, we have possibly forgotten about infants and children who have non-preventable heart diseases! World Heart Day reminds us that there are many subsets of heart disease, and every heart should be attended to (not just heart disease caused by lifestyle errors!).

Therefore, We cannot afford to ignore any of these four forms of disease afflicting at different ages.

0 - 10 yrs (Congenital Heart Disease).
10 - 40 yrs (Rheumatic Heart Disease).
40 - 70 yrs (Lifestyle Heart Disease)*
70 - 100 yrs (Degenerative Heart Disease).

* Associated with diabetes and smoking.

It is my endeavour here to highlight heart disease in infancy and childhood, which is due to Congenital Heart Disease.

Also, Read - Facts About Congenital Cardiac Defects

The Magnitude of the Problem

The World Health Organization (W.H.O.) has declared that 8 per 1000 live births are born with Congenital Heart Defects. A paper from the All India Institute of Medical Sciences states that extrapolating the 0.8% incidence to India's population growth, nearly 180,000 children are born with CHD each year in India. Of these, 60,000 to 90,000 suffer from critical CHD requiring early intervention, and possibly 98% of these succumb in infancy and contribute to the 10% of infant mortality. As a ballpark figure, approximately 100,000 children are added to the pool of CHD in India each year! All government and private tertiary care facilities together can attend to about 8000 - 9000 children each year.

A famous cine actress of yesteryear, Madhubala (real name Mumtaz Begum Dehalvi), had a Congenital Heart Disease (Ventricular Septal Defect), which was unattended to and had caused a reversal of shunt and cyanosis (masked by her dark lipstick!). Her family had then taken her to England for a possible heart operation, but the same was denied as the blood pressure in the lung had become very high and thereby had made her INOPERABLE.

The problem has been confounded further!

Lack of awareness that the incidence of CHD is higher in consanguineous marriages.
Lack of awareness that measles during pregnancy and steroids given during pregnancy may cause a higher incidence of CHD.
Lack of awareness among parents and grandparents as the child who has CHD may look nearly normal at rest!
Young parents are relatively busier with their work and economically relatively weaker early in their careers and inadvertently do not attend to the tiring, quiet child who has undiscovered CHD.
Insurance companies do not reimburse the cost of treatment of CHD under the pretext that it is a pre-existing disease!
Pediatric cardiac surgery needs special skills and training in 'small body technology'; thus, manpower costs are relatively higher than in adult cardiac surgery. "It takes more than what it gives!"

The solution Provided by Rotary

There has to be a multipronged approach in society to reach and treat children born with heart disease due to no fault of their own!

Outreach & Active Surveillance.
Medical and Surgical treatment.
Rehabilitation.

Outreach

There is a sizeable number of children born with congenital heart disease than those that come to tertiary hospitals. Lack of awareness of the symptoms and signs of heart disease amongst poor and young parents and lack of adequate screening of newborn children may result in children growing up without knowing about the presence of a murmur or blueness of lips and nails. Since all deliveries are not in hospitals, especially in rural and semi-urban settings, only the milder and relatively less symptomatic subset of CHD will reach school-going age. They form only the tip of the iceberg.

All newborns should be examined for blueness and murmurs.
It may be desirable for all schools to get children examined by a doctor at the time of admission.
Voluntary organisations (N.G.O.s) embark on Heart Disease Outreach to screen at as many of the checkpoints that could be thought of.

What Can an Organisation like Rotary Do?

Can organise funding of organisations which can arrange for these expensive operations at optimal cost.
Can organise screening of children in schools and villages so that they are picked up in time by Echocardiography and offered timely open heart surgery if required.
Can organise transport and other logistic support for the children and parents to reach them to tertiary centres.
Can organise social workers who can visit villagers and provide genetic counselling to gradually reduce the incidence of CHD in future generations.

Also, Read - Diagnosing and Treating a Heart Problem Before Birth: A Reality Today

What Can Private Healthcare Providers Do?

Concessional Tariff for children with Congenital Heart Disease.
M.O.U. with N.G.O.s, e.g. (Max Smart and Rotary Delhi Central of Dist 3011).
Encourage the development of Pediatric Cardiac Surgery and Intensive Care even though it takes more than what it gives.

Also, Read - What Factors Will You Consider In Choosing a Hospital For Your Child's Congenital Heart Disease?