Sanjay and Khusbu’s experience as parents of a child who received a liver transplantation from cadaveric donation

My story began when my child was born. At that time he had a raised bilirubin. On the second day, his bilirubin decreased, and we were told that this would improve and that the baby should continue to be fed by the mother.

Our child was discharged and at home the baby continued to have jaundice and a very dark yellow urine. This continued for three months. Suddenly one day we noticed that the child had  huge black patches all over his body and he looked scary.

As a very worried father, I took my son to the hospital where he was born and the doctor examined him as a case of liver failure. He was treated and this was controlled. He was diagnosed with neonatal cholestasis. The cause of this was investigated and Biliary Atresia was confirmed as diagnosis. Ankit had to undergo a Kazai procedure at 4 months and 3 days. This was already very delayed. The justification of this operation was so that my son had a few years of support before he was strong enough for a liver transplantation.

Following the surgery, Ankit always had health problems. Jaundice, periodic fevers always made us run to the hospital for admission, treatment and management. I cannot recall the number of times my son was admitted, how many bottles of albumin he was given and the number of blood transfusions he ended up having. To top it all, he had three fractures. These traumatic episodes became a part of our lives but we didn’t give up although we became frustrated and kept asking ourselves why this was happening to us, when we could get over this situation. We kept praying to God to help us overcome this. Ankit was a special child as he was our first born.

Due to these frequent visits to the hospital, my job definitely suffered, my increments suffered and people could not understand that this could happen in personal lives. I received one warning letter and almost received a second one, which I had to take up with the management. I was branded a shirker until my management realized the seriousness of my constant leaves from work and actually supported me.

When Ankit was 3 years old, he was referred to Niryana Hridulaya in Bangalore but since I am an ESI beneficiary, the case was referred to the Institute of Liver and Biliary Sciences, New Delhi. Ankit was treated here and was originally planned for a live related liver transplantation. Khusbu my wife was going to give a part of her liver to help Ankit. However, by then, I had become very demoralized with my life and my circumstances. We live alone as a very small family in Delhi and our family members are far away in Bihar. I am a small computer operator and Khushbu  is a housewife. For me, I became paranoid about losing her  even though the risk of being a donor is very, very small. I suppose the circumstances I was in, being alone, no family support and fear that Ankit may not make it started to make me backtrack quite a bit. I had almost given up hope and had started feeling that this was the end for my son.

Until the day, when the pediatric hepatologist called and told me that some child was dying on a ventilator in a another hospital and the parents were willing to donate her organs to help. ILBS got the offer for the liver and we were in luck. Suddenly, there was hope that our son would actually have a chance to live again. There was happiness and excitement and I just couldn’t wait to reach the hospital. We reached the hospital at 11pm and were admitted so that Ankit could have preparatory tests before the transplant.

Then Ankit got the liver. It came with the retrieving team and the transplant coordinator who reached the next day at 9:30pm. The operation took place and he is now ready to be discharged for a new life.

I am not a rich man. I am probably a person who will continue to struggle like the common man with the routine job, financial, health issues that every family has. But I am truly grateful to those parents who accepted to donate their child’s organs because Ankit has had a chance because of them.

After this experience, I hope that many more will go onto the organ donation register at www.dorso.org and register themselves as organ donors when they are no longer in this world! I had done it because organ donation saves lives.