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The power of a community

Five-month old Satyam and his family originally hail from Gaya, Bihar. The family has spent their recent years living in Gurugram as Mantu Das, the boys’ father is a cab driver for the employees of a leading media group. He earns Rs 9000 per month with which he supports his family of four.

Soon after his second-born son came into the world, Shobha and Mantu learnt that he was unwell. They had not encountered any issues with their elder son, so they were on unfamiliar grounds. Unsure on how to tackle this problem due to a combination of lack of knowledge and funds, Manta began to ask for assistance while driving his cab whenever conversation struck with the passenger. He wasn’t aware of even the existence of a Foundation dealing with heart disorders.

In an ideal world, Satyam needed intervention immediately after birth, with no minutes to spare. This is what drives our cause and our mission to Save Little Hearts. We work every day to bridge the gap for these families where money becomes the primary reason for late intervention and sometimes no intervention at all.Satyam’s family spent many weeks shuttling between hospitals in search of an answer. At one hospital the case was rejected as it was too complex in nature, in another the waiting list was too long – when they finally reached a private hospital, the estimated cost of surgery was too high.

Through the power of social media, our Founder Trustee, Genesis Foundation came across a tweet requesting for support for Satyam. Needless to say, she didn’t bat an eyelid. It’s always been in her vision to save any child suffering. The case was taken forward by our HOPE team and we managed to obtain a free conduit for the procedure, therefore deducting further costs for the parents.

Satyam was taken to Artemis Hospital, Gurugram (one of our partner hospitals) where the diagnosis was confirmed – Pulmonary Atresia (Tetralogy of Fallot physiology). This is a more severe form of TOF that a baby is born with. He required a bi-ventricular repair with a conduit placement which was approximated at Rs 2.8 Lakhs. A phenomenal amount for the parents to bear.

Normally, we have two great arteries that come out from the heart – the aorta from the left side to take blood to the body; and the pulmonary artery, to take blood from the right side of the heart to the lungs. This little baby was born with only one artery and if that wasn’t critical enough, he also had a hole in the wall between the two pumping chambers.

When the baby was wheeled into the hospital, he was in critical condition and recognised as a high-risk case. He was very blue with oxygen saturation of only 55-60%, frequently short of breath even while resting and severely underweight – only 4kg. All these symptoms were caused due to the heart disorder that he was battling silently. He was scheduled for a complete repair – where the missing pulmonary artery is created and the hole in the heart is closed. This procedure with a weight of 4kg is performed at limited centres in India due to the complexity of such cases.

Our HOPE team and some employees of the media house visited Satyam and his family at Artemis. He was discharged on 6th June 2019, after a two-week stay at the hospital. He is now doing well and on long-term follow-up with Dr Aseem Srivastava. The family is grateful for the existence of a Foundation working for children, like ours where we were able to truly give life a chance for their son.

It was through the grapevine of social media that this case was brought to light for us. Let’s take a moment and not forget the sheer power in a community and reaching out within for support. The magic is created when we all play a small, but critical role in changing the life for not just the boy who was critically ill, but for the entire family.

More power to all of us and every community striving to make a positive impact!

-Contributed by Simran Sagar