10-month-old Baby Avighna has been battling severe jaundice since birth. His eyes and skin are tinged yellow and all he can do is cry to express his distress. He has a dangerous liver disease that can cause extensive brain damage and even kill him. Only a liver transplant in 5 days can save this sweet baby, but his parents, Arpita and Sailesh have run out of money and hope. This is not the first time they have encountered this tragic situation before – they have already lost a child to this merciless disease.
“I was depressed and suicidal after the death of my first child. The birth of Avighna gave me hope to continue living. But now, even he is slipping away from me and all I can do is watch helplessly.”-Arpita, mother.
Baby Avighna’s troubles started within 7 days after his birth
Arpita was relieved when she gave birth to her baby boy six months ago; he didn’t have any visible signs of illness and she remembers saying a silent thank you prayer to God for it. But her happiness ended after 7 days when Avighna’s skin and eyes started turning yellow.
“When I noticed the yellowness for the first time, I froze with fear. It brought back really bad memories because my first child’s disease started just like this. Am I a cursed mother? Why has this disease come back to claim another innocent life?”-Arpita, with tears in her eyes.
Baby Avighna was soon diagnosed with a rare and deadly disorder
As soon as Arpita noticed the yellowness of his body and irritability, she called Sailesh immediately and they rushed the baby to the nearest hospital. After a couple of tests lasting over a few days, the doctor diagnosed him with Crigler-Najjar syndrome, a disorder because of which the body cannot convert and clear bilirubin ( substance made during breaking down of red blood cells) properly from the body. This can cause death resulting from severe brain damage.
“My wife’s maternal instinct is what helped us to avail medical care as soon as possible for our baby. The doctors have told us that medicines cannot prolong his life for long as his bilirubin levels are unstable – he needs a liver transplant at the earliest. We have the will to help him, but not the money”-Sailesh
Sailesh had to beg and borrow to buy a phototherapy machine for his baby’s survival
The only way to keep Avighna’s jaundice levels in control is phototherapy. Sailesh was forced to get a phototherapy machine at home despite running low on finances, as he couldn’t afford to keep up with the hospital charges.
“Somehow my husband explained to friends and family that Avighna has to be kept in the phototherapy machine or he can die. People helped and my son is alive only because of that. But he is growing up now, and feels suffocated when we put him in it. He cries and throws a tantrum, but we have no choice but to keep him in it at least once a day till he gets a transplant.”-Arpita.
Arpita quit her job during pregnancy, Sailesh cannot afford to save him on his meager income
Arpita used to work in a private firm, but she quit her job when she became pregnant with Avighna. She wanted to make sure that she had no complications, but fate had other plans for her. Sailesh works in a private firm in Mumbai for a very modest salary. He had to give away all his savings for the treatment of their first child. He has been borrowing lakhs to take care of Avighna’s medical expenses. Now Arpita and Baby Avighna are in the Chennai hospital where he is being treated, while her husband visits once every few days as he cannot afford to lose his job.
“My husband had to go back to work as he had been taking a lot of leaves ever since Avighna was diagnosed. We have spent more than Rs 3 lakhs on hospital visits and medicines alone. We had to sell whatever jewellery we had and our savings are zero now, and cannot afford the transplant."-Arpita.
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Avighna’s liver transplant has been delayed for months now because of lack of funds. He is inching closer to brain damage and death, with bilirubin levels increasing every day. He cannot feed or sleep properly. His parents have run from pillar to post to arrange the money, with no avail. Without a liver transplant in 5 days, he will succumb to death.