Solving the problem of congenital heart defects in rural India


In India, nine in a thousand children are born with congenital heart defects (CHD), resulting in 2 childless children each year. (Indian Pediatric Medical Journal, 2021). More than a fifth of these babies have serious defects that require treatment in the first year. However, very few are diagnosed and receive timely treatment. Present at birth, coronary heart disease is mostly seen in newborns, although some can be discovered later in infants and children.
Treating coronary heart disease requires dedicated healthcare facilities, infrastructure, and a skilled workforce. Many studies report that childhood coronary heart disease increases the risk of diseases like asthma, epilepsy, heart failure in adulthood, and psychiatric disorders (University of Helsinki, 2020). Late diagnosis of coronary heart disease carries a high risk of mortality, morbidity and disability. Thus, coronary heart disease is life threatening and must be resolved as soon as possible.
In rural India, coronary heart disease is a formidable and complex public health problem. Because of the limited screening at the base, parents do not see a doctor until the children develop significant symptoms. In addition, the lack of information from frontline workers, social and religious stigma also lead to late referrals. Rural families are often unable to afford expensive treatment and limited access to specialist care. Thus, causing a delay in diagnosis and treatment. During the COVID-19 pandemic, heart surgeries for children with coronary artery disease declined by 70%.
The majority of the centers belong to the private sector. Rural families from poor backgrounds cannot afford treatment. In India, most centers are located in southern India, where the majority population is relatively better in terms of literacy and standard of living. And access to government centers is exhaustive because they have long waiting lists. All of this translates into treatment because of the long waiting times, especially for rural families.
Let’s look at an example to understand how things get tough for a rural household that has to treat their child for coronary heart disease. Shamli (Name changed) is a four year old child and a resident of a remote Maharastra tribal village. She was already 18 months old when her parents realized she was reaching most of her growth milestones late and was mostly lazy or sick. Initially, Shamli’s parents were reluctant to travel to Mumbai to see a pediatrician, so they took medication from a local doctor. But, as Shamli’s condition deteriorated daily, a health worker informed them about the organization of a health camp in their Taluka. During this camp, Shamili was diagnosed with a hole in the heart and the pediatrician recommended urgent surgery. Due to limited financial resources, her parents delayed the operation and it was not until the age of three that she received her treatment. This was made possible with the support of a non-profit organization that strives to provide treatment for children with congenital heart disease by covering all treatment and travel costs for the child and their family. . Like Shamli, there are large numbers of children in rural India awaiting timely treatment and surgery.
Despite these many challenges, I see hope as things improve. Rashtriya Bal Swasthaya Karyakram, the Government of India’s promising program to provide timely child health screening and early intervention services, ensures a systems approach to early identification and linkage to care, support and counseling. processing. Along with this, there are many examples where many state governments, communities, businesses and social organizations are doing their best to tackle this problem on a large scale, especially for marginalized and vulnerable families.
I believe that collaborative approaches with a sense of urgency can help us provide a healthy and secure future for these children with coronary artery disease. Based on our experiences over the past years in rural Maharashtra and an in-depth understanding of working with the challenges on the ground, here are the key areas of action to successfully solve the problem of coronary heart disease, especially in rural areas –

1. Frontline health workers

Frontline workers act as stronger anchors for the early identification, rapid referral and effective management of coronary heart disease. Being mostly from the community themselves, they can help fight stigma, counsel parents before and after treatment, provide early detection, early referral, diagnosis and follow-up.

2. Collaboration

The formidable congenital health disease and the wide range of outreach, comprehensive counseling and treatment activities can be managed effectively and efficiently through partnerships between government authorities, frontline health workers and organizations at non-profit organization to ensure and improve access to government programs. In our experience, the public-private partnership model has been key to the successful and rapid treatment of many rural children suffering from this deadly disease.

3. Resource allocation

The large scale of this problem requires high resources and more health care facilities for treatment. A proactive response from companies and HNIs to provide substantial funding is the need of the hour. This will help meet the urgent need for dedicated CHD units in each district or group within the district. It also supports meeting with expensive equipment and qualified medical experts for treatment, calls on businesses and HNIs to help with open hearts.
Ultimately, I urge all stakeholders to come forward and join hands in addressing the challenges of CHD by acting on the three above. An urgent coronary heart disease response is the need of this hour and as a nation we must address this public health problem and ensure a healthy future for the children of children with coronary heart disease.
The views of the author are personal and do not necessarily represent those of the website.
Mangesh Wange, CEO, Swades Foundation
Mangesh Wange, CEO, Swades Foundation
Mangesh Wange is the CEO of the Swades Foundation. He has been working with the Swades Foundation since May 2016 and has over 30 years of experience in general management with P&L responsibility and leading successful start-ups in the corporate and social sectors.

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