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I Don’t Want To Lose Another Baby To A Disease That Killed My First

I don’t want to start believing that motherhood isn’t destined for me. When I lost my  6-months-old baby to a dreadful disease, I never thought that I would gather the courage to hold a baby in my arms again. Avighna gave me the lost happiness and hope in life. Now his life is also uncertain. I can't bear to see him battling for life.

I gave birth to my little baby Avighna two months back. Just when we thought that our family was finally complete, we started running to the hospitals again. My baby is already struggling to live. I feel like the curse is repeating again.

Avighna was born healthy. After 7 days of his birth, he started showing signs of jaundice. His eyes and skin started turning yellow. When this first happened - I felt frozen with fear. This was exactly what had happened to my first baby girl soon after her birth.

The past seems not to leave us

Avighna became sick within a week after his birth. Without delaying even for a moment, we took him to the doctor. A series of tests were taken and he was diagnosed with Crigler Najjar syndrome. It is a rare liver disease capable of causing brain damage. I couldn’t feel the ground under my feet because my daughter had died of the same disease. That time, we didn't know what to do. My daughter couldn’t get treatment in time and died an untimely death.

My little boy has been suffering from birth. Doctors are saying that it is very important to keep his jaundice levels at bay. If his jaundice keeps coming back he might suffer brain damage. We will have no means to save him.

My husband, Sailesh, works in a private firm in Mumbai. With his low income, it is very difficult to afford all the necessities which include the rent of the house, food and other everyday needs. Avighna is such a little baby and he needs extra care. It is difficult to manage everything.

We have started the extra care at home

To keep his jaundice levels under control, Avighna needs to be given phototherapy. It is the only way to keep jaundice at bay for newborns. Since we can’t afford to keep him in the hospital for many days, we have managed to buy the phototherapy machine at home. I don’t want to keep him away from me. I want to be around him at any cost.

We can keep him in the phototherapy machine only while he is sleeping. When he wakes up he cries and refuses to be there. Also, because of the rising summer temperature, it is even more difficult to keep him there. My little baby can’t even sleep on a cradle or with his parents.

I have already lost a child. I quit my job when I was pregnant with Avighna. I couldn’t risk him. I have been very cautious this time. But still, I couldn’t protect my baby from this condition. What I can do is get him treated.

In the past 2 months, we have already spent Rs 3 lakhs just to ensure that we don’t lose our baby. We don't have the funds to manage our expenses. All the savings that we had made are gone. Sailesh and I gathered every paisa we could. We have sold all the jewelry. We have been taking loans from almost all our relatives. I wonder how will we ever repay them back.

Days are passing in uncertainty for us. Sailesh is scared to leave me alone with Avighna. He calls several times in a day while at work just to ensure that our baby is fine. We have struggled for years to get over the death of my daughter. When I hold him in my arms, the thought that we might lose him haunts me. We have not slept well for almost 2 months now. I can’t afford to lose Avighna now.

Doctors have said that my little baby can become better and live a healthy life if he gets a liver transplant but we have very little time in our hands. Each passing day is a risk on his life. Guilt is choking me to death. It is difficult to even imagine our lives without him.

How can you help?

Liver transplant is the only thing that can save my baby. But the amount required to carry out the transplant is as high as Rs 25.5 lakhs. We have exhausted all that we had. We have no money left to even pay for his regular treatment. If I lose him, I will have nothing left to live for. 

estimation letter
estimation letter
Please help a sweet baby boy to fight with liver problem & save baby
Please help a sweet baby boy to fight with liver problem & save baby
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5th June 2018
Dear Supporters,

Thank you for the wonderful support that you have shown towards Avighna. She is doing better now compared to earlier. She has undergone the pre-transplantation investigation. We are also looking for a donor and a few of our relatives are undergoing the tests for the same.

Once the reports from the tests are in, the doctors will be able to suggest the future course of action. Thank you for the wonderful support. Please do pray for her health and speedy recovery. Will keep you posted.

Thank you! 
12th May 2018
Dear Supporters,
Thank you all for your support.

Baby Avighna was discharged from the hospital and there were some signs of improvement. As of now, he's at home but he still has to be under blue light called phototherapy. My family has set-up a similar arrangement at our home and we keep him under it for his Jaundice.

His transplant couldn't happen as we're still searching for a matching donor for him because his blood group us O+, Me and my Husband will be the last option if we couldn't find anyone. Doctors have suggested that the surgery may be required in the coming months so we have to find a donor before then. As of now, he is okay. He cries at night being under the light because of the heat but it is required otherwise his jaundice will become severe.

I and my family are extremely thankful to each one of you for the love which you have shown towards my baby. Thank you so much for it, May God bless you all.

We shall keep you all posted on Avighna's health. Please keep praying for him.

Thank you,
16th April 2018
Dear Supporters,

Thank you so much for your tremendous love and support. We couldn't have done this without you.

Avighna is still in blue light called phototherapy. He's still suffering from jaundice and because of the summer heat, he cannot be kept under blue light for 10-12 hours. Hence, the doctors are suggesting us to go for his liver transplant at the earliest.

His surgery will be done in Global Hospital, Chennai. We will be leaving for the same in 15 days to complete all formalities before going ahead with the transplant.

Please keep supporting us and praying for us.

Arpita and Shailesh

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