“When Sushila became pregnant, we hoped that we had a daughter. When we finally welcomed our baby girl, we knew our prayers were answered. But now when I look at her become breathless even if she catches a small cold because of the growth on her nose, I feel she will be taken away from us before we have fully enjoyed parenthood,” Kundan, Shanti’s father.

Baby Shanti can only breathe through one nostril

Shanti, the first-born and only child of Kundan and Sushila was born with some extra flesh in front of her nostrils. While Sushila was pregnant, the first-time parents were of the conviction that they were going to have a healthy baby. Little did they know that Shanti will barely be able to breathe once she is born.

“While our relatives and friends keep telling us ‘what will people say about a girl born with such a  weird deformity?’, I don’t understand how will I even be bothered about this if she doesn’t live. My baby can breathe only with one nostril. When she catches a cold, she can’t breathe at all. Sometimes, by looking at her, it is difficult to say if she is alive. Every time this happens, we skip a heartbeat.”

 Although a happy baby, Shanti’s rare condition is gradually pulling her towards death

After Sushila’s 6th month of pregnancy, sometimes the baby in her womb seemed to move abnormally. The condition could be brought under control only after Sushila was given injections. Doctors never suspected any severe condition. Now, Shanti will not even make it without an urgent corrective surgery. If this is not done, she will stop breathing at any moment.

“When Shanti was born, her condition wasn’t this grave as it is now. With every passing day, she can barely breathe. Although she doesn’t cry much and is a happy baby, we are scared that the happiness that our bundle of joy has brought, will be snatched away from us.”

Being the sole bread-winner, it is difficult for Kundan to arrange the cost of his baby’s surgery

Kundan packs things in a small ration shop in Delhi. He manages to earn Rs 9000 a month. Apart from his wife and baby, he has his parents and two younger siblings in Bihar dependant on him. He also has to pay the rent. Having a surgery for his baby is making things almost impossible for him.

“Shanti is so small that we can’t even take her on a bus or train to the hospital. Every time we have to go to the hospital, I spend Rs 400 only on travel. The visits to the hospital are becoming more frequent. I have to take offs at work more often now which is resulting in reduced income. My baby is so sick that it is difficult to concentrate on work. I don’t want to leave her alone even for a while, but I am forced to leave her to save her.”

 Seeing her baby struggling to breathe makes Sushila feel guilty

Being a mother for the first time, Sushila blames herself for her baby’s condition. She feels guilty of not being able to create a safe and pain-free life for her baby. It becomes difficult for Kundan to tell his wife that Shanti’s pain is none of their fault. The parents are desperate to save the life they have brought to the world.

“Not only that we have very few relatives and friends, the ones that we have are also not well off. They are ready to help us with Rs 500 to 1000, but that is not enough to save out little baby. All Sushila and I want is that our baby can live.”

How you can help

5-month-old Shanti has a rare deformity where extra flesh in front of her nostril doesn’t let her breathe. She needs an urgent, corrective, life-saving surgery which will cost the parents a whopping amount of Rs 5 lakhs. The first-time parents are desperate to save their baby girl.