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 usAvighna 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 homeTo 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.