Keshav, a resident of Asanpoi village in Raigad, wishes to see the day when his 4-year-old daughter Sandhya will be able to play like other children of his neighbourhood. Since her birth, Sandhya would often fall sick and has been underweight. Keshav and his wife are doting parents.
However, due to the absence of a paediatrician in their community, Keshav could not take up a timely diagnosis for his daughter. When Sandhya was a year old, he came to know that she was born with Congenital Heart Disease (CHD). Surgery was recommended for her timely treatment. But, Keshav works in a small grocery shop and earns a mere INR 9,000 monthly. Barely managing the daily expenses and medicines for his daughter, he awaits help for treatment of his daughter.
Like Sandhya, many children in rural India are awaiting medical treatment for this life-threatening disease. CHDs are present at birth, and primarily seen in neonates, although some may be discovered later in infants and children. The cause for CHD’s ranges from genetics to the use of drugs during pregnancy, syndromes, high altitudes, etc. However, in most cases, the cause remains unknown.
Nine in a thousand children are born with CHDs in India. This translates to approx over 2 lac children born annually with CHD. Out of these one-fifth need early intervention to survive the first year of life. Infants and children who may have survived despite no intervention add to the burden of CHD (Medical Journal, Indian Pediatrics indianpediatrics.net/dec2018/dec-1075-1082.htm).
Challenges like the mind set of parents and society, poverty, poor accessibility to health care facilities put children from rural India at a higher risk. Due to the limited or absence of screening at grassroots for CHD, parents seek medical care only when children develop significant symptoms. Further, lack of information with frontline workers, social and religious stigma also leads to late referrals. Thus, causing a delay in diagnosis and treatment.
The accessibility to required specialized medical care is also very limited for children in rural India. The majority of centers for CHD patients are in the private sector and are not affordable for rural community members from impoverished backgrounds. Also, most CHD care centers are located in South India, where the majority population is literate and has a higher standard of living. Families in these states, therefore, have better affordability and awareness about CHD. The few government centers also have long waiting lists. Therefore, poor access to specialized care and expensive treatments force rural families to keep waiting and save for the treatment, eventually delaying it.
Despite these challenges, the number of children receiving open heart surgeries has doubled over the years. This gives me hope that things are changing for the better.
A deep understanding of these challenges and a collaborative approach with urgency can help us provide a healthy future to these children.
Children with CHD’s are mostly considered doomed by society and sometimes by parents too. This mind set often leads to late diagnosis of these children.
The combined efforts of the state, community, corporate and non-profits have progressed to address this issue at scale. Several state governments are supporting treatments for children with CHD from vulnerable and marginalized communities. Non-profits working for the health of children under 18 years are also supporting the efforts of the government. However, the current backlog, delay in diagnosis and social stigma associated with CHD’s need a stronger collaborative approach of all stakeholders. I share below key focus areas for addressing CHD problem for rural areas based on our learnings in rural Maharashtra.
a) Frontline Healthcare Workers – The anchors: The frontline workers can act as stronger anchors for efficient and timely management of CHD’s. Leveraging them for counselling of parents before and after the treatment, early screening, timely referrals, diagnosis, and ensuring follow-ups.
b) Collaboration – Need of the hour – The enormity of this issue and extensive range of activities for complete awareness, counselling and treatment can be managed effectively and efficiently by partnerships between government authorities, frontline healthcare workers and not profits to ensure and improve access to government schemes.
c) Resources deployment on high Priority – To upgrade existing and build new CHD care units: Considering the magnitude of this issue, there should be at least one dedicated CHD care unit in every district or cluster of district basis of the caseload. The cost-intensive equipment and trained medical experts for treatment call for corporates and HNI’s to contribute with open hearts.
On World Heart Day, I am optimistic that we can take a leap to meet the challenge of CHD by acting on the above three. The successful collaborative response to COVID pandemic by our society, government and corporates adds to this optimism. Similar response to CHD is the need of this hour and as a nation we all should join hands to resolve this problem on war footing to brighten the future of lacs of our needy children and their parents.
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