His extended family laughed at A Kandaswamy, a flour-mill owner in Kanchipuram in Tamil Nadu, when he agreed to donate a part of his liver to replace his 19-month-old son Sanjay’s diseased one in 1998. A living-donor transplant — as opposed to harvesting a liver from a cadaver — had never been done in India before.
Kandaswamy had heard that Indraprastha Apollo Hospital in Delhi had a team of doctors trained overseas to do the surgery, which meant he would have to move to Delhi for several months with his wife and son. But he went ahead.
He sold a major portion of his land to foot the hospital bill and gave 30% of his liver to his son to save his life. The rest is history.
Sanjay became the first child to go undergo a successful liver transplant in India in November 1998.
Sanjay was born with Biliary Atresia, a rare congenital illness that crippled his liver. It leads to bile being accumulated quickly in the body, which triggers severe cirrhosis, the medical term for scarring of the liver that finally leads to liver failure. The only treatment is, and was for Sanjay, a liver transplant, which had not been an option in the country.
Within weeks, the family moved to Delhi. Since Indraprastha Apollo Hospital was doing the surgery for the first time, they offered Kandaswamy several concessions. Despite that, he ended up spending upwards of Rs. 5 lakh on his son’s treatment and their stay in Delhi.
Sanjay’s treatment was long and arduous. It involved three major procedures that included the harvesting of a part of the liver from Kandaswamy, transplanting it in Sanjay, followed by recovery that included giving the little boy ventilator support and heavy medication. But Sanjay passed this major hurdle remarkably well.
Now a Class 10 student at Mount Fort School in Kanchipuram, Sanjay is now 15 and leads a life no different from
his friends. He plays football and cricket and loves to argue with his college-going sister Priyanka.
“Post-operation, he wore a mask for the first two years to avoid infections. Till the age of five, we got his Liver Function Test (LFT) done every three months, but now we go for just an annual check-up. He now just pops a single tablet each day,” said mother S Thilaka, a homemaker.
An excellent student, Sanjay loves science and wants to become a surgeon when he grows up. “Science and doctors at the Apollo Hospital saved my life. I have to pay back to the stream that saved my life. So I want to be a doctor and save many lives,” says Sanjay.
At school, no one knows he has his father’s liver except some teachers. “He’s more than a normal child. So why should we tell everyone about this,” asked Kandaswamy. Since the liver begins to regenerate itself almost immediately, the donor’s and the
recipient’s livers will be almost completely regenerated by eight weeks. Kandaswamy is a healthy living example, he’s leading a normal life after donating a major portion of liver to his son.
Liver transplant hub
Since then, India has emerged as the regional hub for liver transplants, with just three hospitals in Delhi doing upwards of 3,000 liver transplants.
Dr AS Soin, who was part of the team that operated on Sanjay, did his 103rd paediatric liver transplant surgery at Medanta - The Medicity earlier this week. He has done 1,160 transplants in all. Apollo’s Dr Subhash Gupta’s team has done 1,145 transplants, of which 89 are in children. These two hospitals are the top two liver transplant centres in India.
A lot more transplants are needed. “At least 2 per million children need liver transplants in India, which means 2,500 transplants should be done each year but we are doing about 50-60 paediatric cases across centres annually,” says Dr Soin, who leads the liver transplant surgery team at Medanta.
“Even at our centre, we don’t do more than 30 paediatric cases a year, largely because of baseless fears in the minds of parents, misconceptions and lack of awareness. Of the three parents who come to us with children needing liver transplants, only one agrees for it,” says Dr Soin. Most don’t want to spend Rs. 12-14 lakh on surgery fearing the child won’t survive.
“Most parents believe that children don’t survive for more than 2-3 years post-surgery, or their life would not be normal or, in case of girl children, that they will have problems getting married and conceiving,” says Dr Soin.
Life back on track
Dr Subhash Gupta, liver transplant specialist at Apollo Hospital says, “If a child has survived the first month, it is highly unlikely that she will not live because in children, the diseases that they are operated for do not reoccur after transplantation, unlike in adults with damaged livers because of hepatitis B or hepatitis C infections, liver cancer or alcoholism”.
“As in the case of Sanjay, it’s impossible to tell if a child has undergone transplantation as their growth and development is like any other child’s,” says Dr Anupam Sibal, senior paediatric hepatic consultant at Indraprastha Apollo Hospitals. “Barring a few restrictions like taking medicines in time, regular blood tests, restricted eating out, hygiene, life is completely normal,” says Dr Gupta.