Lalmati and Mohanlal were over the moon. After trying and waiting for seventeen long years, they were finally going to be parents.
But the joy was short-lived, as their son, Shiv, was born 12 weeks premature, and his weight was only 1 kg.
Although he was being treated in a Level III intensive care unit and under constant vigilance, he kept losing weight, and after 23 days, he was diagnosed with Patent Ductus Arteriosus (PDA), a heart disorder.
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PDA occurs when there is an unwanted connection between the two major blood vessels of the heart, aorta, and the pulmonary artery. Because of this condition, children face various health problems that not only impede growth but also create more complications.
Mohanlal, a labourer, was not in the position to afford NICU care at the government hospital, and seeking tertiary pediatric care in a private hospital was out of the question.
In this moment of darkness, this family finally found some light when the Genesis Foundation, a Gurugram-based NGO which aids medical support to children with heart problems, especially Congenital Heart Disease (CHD), came to their rescue.
With its help and support, a team of doctors performed a historic surgery, called PDA device closure, in Thane’s Jupiter Hospital. After 18 hours of surgery, Shiv was finally safe.
Nothing short of a miracle for his parents and a landmark for the medical fraternity, Shiv became the smallest baby in India to undergo the procedure.
Shiv is among the 3000 other children across the country, who have been benefitted by the Genesis Foundation.
CHD affects the lives of more than 2 lakh children a year, with one-fifth of them requiring intervention in the very first year of birth. In other words, as per the report of Indian Academy of Pediatrics (IAP), nine out of 1000 children in India, are seen to be born with CHD.
And despite its prevalence among all economic sections of the society, the lack of awareness and cost of treatment results in children being denied the opportunity to survive and recover.
The foundation essentially wants to bridge this particular gap.
Speaking to The Better India, the co-founder of the foundation, Jyoti Sagar says, “Even though cardiac treatment and care is very advanced in India, more than 80,000 children are suffering from CHD every year. Costing around Rs 1-6 lakh, the treatment and surgery are often not affordable for many. So, we step up to help any such family with a monthly income of less than Rs.10,000.”
A personal loss to mass change
The origin of the NGO comes from a place of personal loss for the founders, Jyoti and Prema Sagar. Back in 1983, the couple had lost their second child to the same disease, only 24 hours after he was born. They had named him Samir.
“The agony and pain of losing a child is unimaginable. When this had happened to us, there wasn’t much awareness about it, nor was the treatment as advanced as it is today,” shares Jyoti.
Devastated, the two began their search for purpose, a way that could help them endure the pain of such a huge loss. In 1984, they came across Missionaries of Charity, an international organisation working for the poor, and began volunteering for various social work initiatives.
“During this time, we slowly realised the seriousness of congenital heart disease and how frequent it was. We didn’t want any other parent to have to go through that, especially due to financial constraints. The idea of doing something in this area came to us, and we started the foundation,” he adds.
While in the initial years Genesis focussed on various chronic illnesses like cancer, thalassemia and cardiovascular issues, they eventually narrowed it down to congenital heart ailments in 2010.
Hospitals like Columbia Asia in Bengaluru, Jaypee Hospital in Noida, Amrita Institute of Medical Sciences and Research Centre in Kochi, MIOT Hospital in Chennai, Jupiter Hospital in Mumbai, etc., now work in association with the foundation, by informing the NGO’s social service cells and administrative units, whenever a case of an underprivileged child with CHD comes through their doors.
To make sure the funds go where they are needed, the foundation first reviews the family background and income certificate of parents, before sponsoring the treatment costs.
“With a core team of 7 members supported by hundreds of volunteers, the foundation has been running a robust network to combat CHD. Our programme is much beyond writing a check. The foundation not only funds for treatment and surgery but also continues to take follow-ups and aid through any post-op needs regularly. For instance, Shiv continues to receive periodic checkups and is in good condition, weighing around 5 kg,” he adds.
Through various fundraising events and awareness drives, the foundation is trying to tackle the issue from the root to the tip.
“Firstly, it is important to have an understanding of how grave the problem is. It is almost the second highest cause of infant mortality in the world, irrespective of geography or economic conditions. Unless there is proper awareness and timely intervention, most of them might not even reach their first birthday. The second most important aspect is correct diagnosis. Scanning of the newborn child allows one to identify any major issues of concern at an early stage to initiate adequate treatment,” he says.
After having put forth a consolidated effort in the area for all these years, Genesis has emerged to be one of the largest NGOs working in this space.
“However, there is still a long way to go. We don’t have a numerical goal for impact, because at the end of the day, saving even a single life is a huge step towards a better and safer world for our children. I hope that our work ensures that certainty and safety for future generations,” concludes Jyoti.
(Edited by Gayatri Mishra)