Four-year-old Pradip Shah from Nepal sits down with his book and turns to the page that shows basic human anatomy. He is quick to point to the drawing, then to his eyes, nose and lips, but stops at the ears. He touches the sides of his head where his ears should have been but instead finds an underdeveloped pair of earlobes.
Pradip and his father Bihari Shah now hope doctors at AIIMS are able to reverse his birth defect that left him devoid of his ability to hear. Since he hasn’t heard a spoken word since birth, the child also does not speak.
Bihari, a scrap dealer in Nepal, knew the treatment would be costly when he started from his village, but is determined to fulfill the wishes of his wife who died along with the couple’s elder son in the April 25 earthquake that devastated the nation. “We had been trying to get him treated since he was born but after his mother and brother passed away I have taken it upon myself to get him treated,” says the boy’s father.
“I lost my entire family, my house and all my life’s savings in the earthquake. He is all I have now.”
Though doctors in Nepal initially suspected a neurological problem, the child was later found to be suffering from Goldenhar syndrome, a rare congenital defect. A bone-bridge implant surgery to carve his ears can help Pradip hear and speak but his father does not have Rs 7 lakh needed for surgery.
Bihari had a tough time making ends meet in Nepal. In Delhi, he has literally been reduced to begging. The duo’s lodging is taken care of at a shelter home outside Safdarjung Hospital. For food, they have to depend on strangers.
“The doctors (in Nepal) referred him to AIIMS. I know the treatment will be the best in the country, but the surgery will cost Rs 7 lakh. I was a scrap dealer back in my village. I used to buy scrap metal and sell it to the dealers. Apart from that, during summers, we used to plant fruits in our backyard to sell in the market. Here, I am still to find a job. I don’t even know Hindi properly to help find me a job. I sit outside the hospital and passersby give me some money. That is how I spend each day,” Bihari says in tears.
Oblivious to his father’s worries, Pradip’s attention remains divided between a packet of biscuits and getting his father to play with him. Bihari now hopes for a miracle to see his son hear and speak.