Where Love Knows No Bounds- A Chapter from the Journal of a Parent

“Where there is Love there is Life”.
Mahatma Gandhi

It is said that it is in times of struggle and strife that the real power of unconditional love comes forward. Nobody else would relate to this more than a parent whose little child is battling a critical medical illness and struggling to give that child a fighting chance at life.

In the hinterlands of Uttar Pradesh, a young 5-year-old boy struggled to eat and play with his friends. The reason? He was constantly breathless and experienced fatigue which prevented him from enjoying the life his friends were able to. What made his condition worse was that he had lost his mother shortly after birth. His father could not come to terms with this loss and took to drowning his miseries in alcohol. Little Shaurya (alias name) was left to be raised by his maternal uncle. Feeling bad on the plight of the little boy, he took over and wanted to ensure that the last sign that he had of his older sister thrived and grew up to be the man his sister may him wished him to be.

200,000 children are born with a congenital heart defect in India

However, the constant breathlessness and fatigue hindered many things for Shaurya. Not being able to eat properly he was not putting on adequate weight. This also made him cranky and irritable. When he attempted to play hide and seek or other games with the children of his village the lack of breath got the better of him, leaving him unable to play with his friends. Sending him to school was a distant dream. When he repeatedly started falling sick, the uncle took him to a few doctors close by. At first, the doctors gave Shaurya medicines and sent the family home telling them that he would get better soon. But when the infections kept coming consistently, the uncle got really worried. He was distraught as he could not understand the reason why little Shaurya was constantly falling sick. He tried to speak to the father about the same, but the father was too caught up in his own misery to be able to do anything.

Finally, the family found hope in a doctor who upon examining Shaurya explained that he had a possible defect in his heart. The uncle was crestfallen, and his mind was racing with a lot of thoughts. A defect in the heart sounded serious. Did that mean that this little child would also go away just like his sister? He could not let that happen under any circumstances.  Following the doctor’s advice the uncle got him to a hospital in Delhi NCR where the doctors confirmed the diagnosis and mentioned that the little boy needed a hole in heart treatment. The fatigue, exhaustion, breathlessness were all symptoms of the same defect. Shaurya needed to be treated immediately as else he would struggle to survive. Even if he did, he would struggle to develop at the same trajectory as his peers.

Shaken and overwhelmed the uncle was ready to do what it took to treat the child. But when he heard the cost of the treatment, he lost all hope and was caught in a spiral of emotion and guilt. While he wanted to do everything to save his sister’s only memory, he did not know how. Being an agricultural labourer he struggled to meet his own ends- one of the reasons that he himself had not married as he would have been unable to support the demands of a growing family. He could not sleep for days just thinking of what to do. How would he gather so much money? How could he let this child, whose parents were no longer there just succumb to an illness? How would he face himself?

Caught on the roller coaster of emotions, the uncle finally met the social worker at the hospital. She then mentioned about an NGO for heart treatment in India which could support the financial cost of the treatment and the intervention could be done without any issues. At first, he thought this was a joke as suddenly it all seemed far to simple. And then he realised that it was not a joke and that was a possibility, without giving it another thought he filled in all the documentation required, and registered Shaurya for the intervention.

Shaurya was operated on successfully and went through an intracardiac repair. It has been 7 months post the intervention. Shaurya is a changed child – not being cranky all the time he is a happy child. He is able to eat properly and go about walking and running with this friends. His uncle dreams of making him a big man one day– a salute to the memory of his sister.

There are many such children living in the hinterlands of our country who have either not been diagnosed or have not been treated for their congenital heart defect – A situation which should be unacceptable as with a timely diagnosis and hole in heart treatment most children can live near normal lives with just one intervention. A lack of awareness and resources are the biggest barriers between life and death. Help us change this. Help us spread the word about congenital heart defects and the work we do so together we are able to save many more lives.

 #Hardildhadaknachahe