Kanchana and her husband Manikandan were overjoyed when they found out they were going to be parents. But the day their child was born, the new parents did not get to take their baby home with them. Instead, he has been trapped inside the Newborn Intensive Care Unit as he suffers from a rare congenital heart disease.
“It is heartbreaking and cruel,” Kanchana told TNM.
When Kanchana learned that she was pregnant, her and Manikandan started planning for the child so that they could create a safe and loving life for him.
“I saved Rs 10 every day in a small undiyal since the day I got pregnant to buy clothes for my baby. I was so excited to have a baby. Both of us worked so hard to ensure that the child would be well with us,” she said, recalling memories from the time she was expecting.
However, when they got to know that their baby was born with a rare heart defect – Taussig-Bing anomaly — the world around them crumbled. In order to pay the hospital bills and continue to keep the baby in NICU, Manikandan had to sell his auto rickshaw and is now earning his livelihood as a daily wage earner in Chennai. He earns Rs 300 per day, hardly enough to make ends meet.
Taussig-Bing syndrome is a congenital malformation of the heart that was first described in 1949. It is a heart defect that affects the flow of blood from the left and right ventricles of the heart through the aorta and pulmonary artery.
“He was born on May 2 in JIPMER hospital in Puducherry. But then after we came to know of this defect, we decided to shift him to Egmore Children’s hospital in Chennai since we were told there could be a long waiting period [for the surgery] at JIPMER,” said Kanchana, adding that the surgery is expected to cost around Rs 8 lakh.
Now, a distraught Kanchana is staying by her child's side and waiting for a miracle. “I chant prayers in his ears so that it might lessen his struggle. Every time my son looks at me, it feels like he is begging for my help. It is very painful,” she said, on the verge of tears.
Though they have made attempts to raise funds to pay for the baby's treatment, their efforts have not been successful. “If something happens to him due to my inability, I don’t think I will survive it,” she said.
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