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Rest in Peace – Baby of Preethi

The inevitability of life is that nothing is ever for certain, nothing is set in stone. But as citizens of this world what truly gives us a good night’s sleep? Knowing that we are doing our best, perhaps?

Everyone at some point in their personal or professional lives would be stumped by feeling that they could do better, but the reassurance lies in the fact that we are doing the best to our ability. As humans that’s what matters most, I think – just giving something a shot. Being fearless of the outcome. Doing it anyway! It’s better than not doing it all, right?

That’s why I want to highlight a case that came into the lives of our NGO – Genesis Foundation. Day and night there were message exchanges between all of us, we were on our toes with anxiety.

Baby of Preethi.

As the name itself suggests, he was only days into this world and swirled between so much hardship that he hadn’t been given a name. It all started on 30th May when our HOPE team lead (Srivatsan) got a distress call from Dr Aseem Srivastava from Artemis Hospital, Gurugram. This little baby had a heart that needed to be mended, but like all the cases that come our way – the family could not afford the expenses.

At the break of dawn our priority was to get our team to the hospital to meet the Doctor, give comfort to the family and meet the struggling heart. It was a complex case, Dr Aseem explained. He had a large Ventricular Septal Defect (VSD), a congenital heart disorder and was in congestive heart failure and on CPAP. After the baby had been transferred to Artemis, the Doctors had planned for an open-heart surgery after stabilisation.

The interaction with the family filled our hearts with nothing but compassion and the will to do whatever it took to give them some ease. The family has been bound with financial stress despite being reasonably educated. There have just been no jobs in hand. The baby’s father suffers epilepsy which resulted to losing his job. He couldn’t even be beside his son through all the medical turmoil, as the family didn’t want to trigger any attack during such a crucial time. The focus had to be the baby and getting him the treatment.

Preethi opened up to us, her eyes welled with tears as she had lost all her faith in a higher power. It stems from being tired of carrying too much hope since her childhood. She was born with a limp in her leg, which makes walking difficult. But she hoped once she got married, life would settle with a partner. Shortly after marriage, her husband got diagnosed with epilepsy and lost his job. This shook her, but she was determined to fight. The couple then conceived their first child in their hometown – Gwalior, and they were over the moon! The road felt like it was finally forking into a more positive and hopeful path. A week after their baby was born, an abnormality was detected in his heart.

This was the final, ultimate test. What now?

The next few days they were left spinning. In and out of waiting rooms of local hospitals and clinics in search of an answer. The baby’s uncle accompanied Preethi for all the doctor appointments as her husband was unable to come. Truly cementing the bond and essence of family responsibility. He expressed sheer disappointment in the system. If only the diagnosis was clearly given from the start…

The biggest challenges in cases like this besides of course financial trouble is late detection.In India over 250,000 children are born annually with congenital heart disorders (CHD). Out of which 70-80,000 babies have critical CHD and do not live to their first birthday, if not diagnosed and treated early. We refrain from the terms ‘could’ve’, ‘should’ve’ and any form of regret but this is an area where every tick of the clock signifies the criticality of life.

With great difficulty, the family managed to borrow some money to reach Gurugram – hoping for an answer, some solace. With hands folded, Preethi and her family surrendered to the doctors at Artemis for guidance. They were able to deposit Rs 1 Lakh at the hospital and the rest of the support was committed to, by us.

On 1st June 2019, the baby boy went in for surgery – aortic arch reconstruction with ASD and VSD closure. The entire procedure took almost nine hours, with everyone on tenterhooks. It was a difficult night, but the little boy was a fighter, holding strong - as the doctor updated us the next morning. He was under observation, but a day later suffered multiple heart failure. The doctors resuscitated him, and he held ground, but the third time, his gentle body that had been put under so much stress decided to let go. His suffering ceased and his eyelids closed. Our hearts sank on hearing this news and Preethi’s faith in God’s plan shattered to pieces, most likely never to join again. This time, there were no words of comfort we could part with. Not all of us could fathom her pain. But all we can do is be grateful that we were able to be part of their lives and at least do our best. The situation at hand of the babies battling CHD in India is staggering, not every outcome is a positive one and that’s the reality of life.

Through our mission to Save Little Hearts, we must remember… not every heart gets saved.

But, better to give a family a taste of hope, the feeling of equality where no life should be lost because of less money. We are all one, and every child born is worth a fight.

Rest in peace our little angel.

--Contributed by Simran Sagar