“My beautiful daughter came into this world on June 27. We chose the name ‘Yohana’ which means ‘God is gracious’ in Hebrew. Like every mother, I too was looking forward to holding my baby in my arms. But I could do that only for a day. The next day, doctors came rushing into my room and stated that there was something wrong with my baby girl. She didn’t look like other newborns- her skin was pale, her eyelashes were white in colour and was vomiting a green liquid. Before I could even enjoy one peaceful day with my little one, she was taken away for some medical tests, on the second day of her birth.” - Pooja, mother.
After years of waiting, the joy of their baby's birth was only momentary - she's now fighting two life-threatening diseasesPooja and Khanchand were told that their daughter was suffering from two rare conditions; 1) Waardenburg Syndrome, a genetic disorder that causes deafness, structural changes in the body, pigmentation causing her skin to turn pale and hair silver in colour and 2) Hirschsprung's disease Syndrome, a disorder that affects colon in the large intestine and causes problems with passing stool).
“When I had a miscarriage 4 years ago, I lost faith in everything. I knew everybody in my family was worried about me. They were scared that I would slip into depression. But when I was finally pregnant, I was on cloud nine. I was extra cautious throughout my pregnancy, but now my baby is dying of terrible diseases that I haven't even heard of. The first thought I had was- why my daughter? Why me? But then I gathered myself and knew that I had to be braver than this.” - Pooja
At the age of just 2 months, Yohana has already undergone 4 surgeries and her sufferings seem to be endless
Barely a month old, she had to undergo two surgeries immediately at a hospital in Indore, where they live. But seeing very little improvement in her condition, doctors recommended that they go to Mumbai for further treatment where she underwent two more surgeries in August. She now has a pipe that helps her feed and another artificial pipe to poop.
Pooja hasn’t been able to hold her baby properly or feed even after 2 months of her birth. But in all these months, Pooja has never been able to breastfeed her baby even once and feel the joy of motherhood.
“Before her surgeries, she couldn’t feed at all. For 60 days she has thrown up everything that we have tried to feed her. Now with the pipes and tubes fit in, although she can feed a little, it’s very risky to even hold her. I just sit beside my baby watching her closely, because that’s all I can do. I feel so powerless, so helpless.” - Pooja
The baby’s father can’t even see her daughter as he works day and night to save her
Little Yohana knows her mother’s touch too well. Only her mother can comfort her when she cries. Pooja hasn’t eaten or slept well in all these months. Most of the times she doesn’t speak, when she does, it’s only about Yohana. Her sister, Manju has a tough time taking her back home from the hospital every day. She stands near the glass as tears roll down her eyes.
“My husband, Khanchand can’t stay with our baby in Mumbai. He works as a salesman in a furniture shop in Indore. He always wanted a daughter, now we have Yohana but we don’t even know if we can save her. He sometimes cries looking at her through a video call. He is very sensitive and emotional father. We have no strength to even console each other.” - Pooja
The parents have left no stone unturned to save their baby, but nothing seems to be enoughKhanchand has already spent Rs 15 lakhs in 2 and half months to save his baby. They have spent everything they had. They have borrowed from everyone they knew and also asked help from NGOs but nothing is enough to save her. She has to stay in the NICU for at least a month now and the cost required to save her is Rs 11 lakhs and he has no way to save his only child.
“We exhausted more than Rs. 6 lakh on her surgeries in Indore alone, after which we brought her to Mumbai, which cost us as much. We are still in need for Rs 11 lakh more for her post-operative care. We were helped by our family members and friends, and are in no position to ask them for more.”- Khanchand, father