Each year in India, more than 200,000 children are born with a defect in their heart. Out of these approximately 70,000 are critical defects meaning that these children need medical intervention within the first year of their life to survive.
Being present from birth, these defects are called Congenital Heart Defects and are one of the leading birth defects, both in India and the world. As a result of a number of recent advancements in medical care, many children born with a congenital heart defect can expect to live near normal lives, provided they receive timely diagnosis and treatment. And this is where the paradox lies. In spite of it being one of the most common birth defects, the awareness regarding the same is limited both among the masses and the larger medical fraternity working on the ground.
Each year, February 7-14 is observed as Congenital Heart Awareness Week with the intent to build awareness so that children born with this defect are able to receive a timely diagnosis and intervention.
Despite significant progress in the treatment of these defects, there are significant challenges to be overcome for the country as a whole. Pediatric cardiac care centers are not easily accessible to everyone. Most of the centers are located in Tier I cities, mostly in the private sector where the average cost of treatment varies between Rs. 1.5-5 lakhs. The Government hospitals do offer care options but, quite often, the waiting lists for surgery is too long leading to adverse outcomes for the child including death in many cases.
While childhood cancer and development disorders have received a lot attention, congenital heart defects remain a little ‘under the radar’. This is sad, as in most cases a corrective procedure can give the child a chance to live a near normal life. Timely diagnosis and screening, however, remain key.
“The largest number of children with heart defects in any country are born each year in India. While considerable progress has been made in the last few decades in the country, much needs to be done to ensure that every single child has access to comprehensive pediatric heart care. This can only be achieved through intense collective efforts from every stakeholder,” says Dr Krishna Kumar, Head, Department of Pediatric Cardiology at Amrita Institute of Medical Sciences and Research Center, Kochi.
Awareness regarding these birth defects remain low even in Tier I cities, let alone tier II and III cities and villages in India. In addition to a lack of awareness, the cost of the treatment, makes it unaffordable for a large section of the society.
The situation, however, is beginning to change with a few government programs, hospitals and non-government organizations working on the ground to make a difference. Genesis Foundation is one such NGO that supports the treatment of underprivileged children born with a congenital heart defect. They work closely with a network of over 35 hospitals located across the country to ensure that children in need of treatment get timely access to the best care possible.
“Our Foundation was set up after our Founding Trustees Prema and Jyoti Sagar lost their second born son to a congenital heart defect,” says Simran Sagar, Operations Director, Genesis Foundation. “Those were the years where not much was known about the disease and medical facilities were limited. The grief of losing their child to a heart disease led them to set up Genesis Foundation. Since 2009, we have been working to ensure that no child in India dies due to this condition due to a lack of awareness and funds.”
Government insurance programs for the underprivileged have been expanded to include congenital heart defects. Where this is lacking non-governmental organizations like Genesis Foundation pitch in. “So far, we have supported 3900 plus children all over the country and being one of the few NGOs working in this space, it is a reality check as to the burden vs the attention. It is in our endevaour to highlight the importance of diagnosis and early intervention through creating awareness with education and reach areas that have no access to medical care. We want to do everything to ensure that every family who has a child born with a heart defect has a fair chance at life with their child.”