During one of my field visits to a village in Raigad in 2016, I met Pooja (name changed), a five-year-old girl whose father was a construction worker. Pooja sat on the porch of the house and watched the other children play Atya Patya. Her father was sitting in a chair behind her. I casually asked them to join the children and play with them. She smiled and replied, “I’m going to get tired.” It was a strange answer and took me some time to process. While I was discussing normal work with a teammate, Pooja walked in as other kids fought for their features and soon dispersed.
Pooja’s father knew my teammate and they soon brought me up to date on her health. Pooja’s father shared from birth that she got sick often and that they tried many home remedies, but there was no sign of improvement. When she was almost a year old, her family visited the local doctor. He referred Pooja to a senior pediatrician in Mumbai. It was then that her parents learned that Pooja was born with a congenital heart defect (CAD), a hole in her heart that limits her activities, growth, and general development.
Pooja was recommended to have surgery, but her father couldn’t afford it. In addition, both parents were very concerned about the risks involved. Fortunately, our health team, along with the local Asha worker, advised the parents and we managed to deliver the treatment successfully, with the costs being covered by both the state government and the foundation.
Pooja’s story is one of the many unhappy parents of children with CHD. As one of the most common birth abnormalities, CHDs can vary from a small defect in the heart to severe malformations. It occurs primarily in newborns and can develop in infants, children, and adolescents. Taking into account the birth prevalence of congenital heart disease of 9/1000, the estimated number of children born with CHD in India is more than 200,000 per year.
Of these 200,000 children, nearly 60,000 to 90,000 suffer from critical lesions that require early intervention. Of these, around a fifth are likely to have serious deficiencies that require intervention in the first year of life. CHD are caused by many factors ranging from genetics to drug use during pregnancy, syndromes, high altitude, etc. However, in most cases the cause is unknown. Understanding the challenges and taking a more collaborative approach with a sense of urgency can help us resolve this issue.
Lack of awareness and timely diagnosis remain central issues in treating children with CHD. While this is the problem in both urban and rural India, it is becoming more difficult for rural parents to access specialized medical care because:
- Treatment for CHD is expensive for people who live on daily wages or are poor. In the end, they wait to save enough for the treatment and eventually delay it.
- Late diagnosis due to home births and limited or no screening at birth in the villages. Often times, parents seek medical help if the child develops significant symptoms.
- The unavailability of specialized medical care and infrastructure in rural areas is forcing parents to travel to cities with their sick child for treatment. Lack of safe transportation (no medical supervision and long duration) often leads to the children developing complications such as hypothermia and hypoglycemia.
- The attitudes of people and primary care workers that a child with CHD is doomed and can never lead a fruitful life creates delays in referrals. Illiteracy, gender bias, local religious and sociocultural practices all affect the care of children with CHD.
Despite the challenges, there is hope as things change for the better. We have many examples of government, community, corporations, and social organizations that have solved this on a large scale. The Indian government has taken several steps and launched various programs and programs that are likely to benefit children with congenital heart disease, especially those who are vulnerable and marginalized. Several state governments, non-profit and philanthropic organizations advocate for economically weaker sections of society to support children with CHD.
While these initiatives are helping to improve the overall picture of CHD in India, the current backlog of children awaiting treatment and new arrivals of children with CHD is prolonging the battle. Additionally, delays in timely diagnosis and low community awareness make solving the problem of CHD difficult.
Based on our experience in solving the problem of CHD in difficult rural conditions, we have derived the following important insights that can contribute to the efficient treatment and management of children with CHD. These are:
Use the army of frontline workers for proper and effective parenting advice, timely referrals and diagnoses. These front line workers can also play a very good supportive role in following up the patient after surgery.
The enormous and wide range of activities for full treatment over time requires collaboration and partnership between district government agencies, frontline health workers, and nonprofits to improve access to government systems.
Given the criticality of the problem and the high resource requirements for treatment, companies and HNIs must respond proactively to provide significant funding.
We can also win the fight against CHD by reacting immediately to the experiences and lessons we have learned from it. But is it possible?
For me this is doable given the way we have seen the coordinated and collaborative efforts of COVID warriors. The pool of frontline workers, government officials, volunteers, corporations, and HNIs came together quickly, which helped effectively respond to the world’s greatest challenge.
(Mangesh Wange is the CEO of the Swades Foundation. Views are personal and do not necessarily reflect those of Outlook Magazine.)
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