“When I had a miscarriage 4 years ago, I lost faith on 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. She has had 4 surgeries already. Her lower body doesn't function, her intestines are paralyzed, portion of her hair has turned silver and she cannot even feed. I pray every minute that I shouldn’t lose my baby.” Pooja, mother of the 2-month-old.
Pooja hasn’t been able to hold her baby properly or feed even after 2 months of her birthFor Khanchand, this baby is a blessing, it is because of her, his wife got her happiness back.
They have named her Yohana which means ‘God is gracious’ in Hebrew. But in all these months, Pooja has never been able to breastfeed her baby even once and feel the joy of motherhood.
“Yohana was born healthy. I regret not holding her in my arms the day she was born. I had a C-section, I was in no position to hold her. Next day, by the time I could recover and see my baby, she was taken to NICU. She had to be rushed to a different hospital because she was vomiting green liquid continuously for hours. I couldn’t even imagine that I will wake up to know that I am on the verge of losing my baby.”
At the age of just 2 months, Yohana had 4 surgeries and her sufferings seem to be endless
Pooja’s little baby has a rare disease Waardenburg syndrome that has caused abnormal pigmentation in the baby. She has silver hair and her skin color is abnormal. She also has Hirschsprung's disease which causes a kind of paralysis in her intestine, her intestines can't function. She had no functionality in her lower body either. Yohana has already undergone 4 surgeries. She has a pipe that helps her feed and an artificial pipe to poop.
“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.”
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 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 video call. He is very sensitive and emotional father.We have no strength to even console each other.”
The parents have left no stone unturned to save their baby, but nothing seems to be enough
Khanchand 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.
How you can helpPooja’s 2-month-old baby, Yohana has two rare diseases that has made her suffer a lot. Even after 4 surgeries, the baby still needs NICU care to survive.
After losing her first baby 4 years ago, Pooja cannot imagine losing another child. Your support will help her to save her baby this time.