Verified By Dr Smita Malhotra July 30, 2023
1966Dead ends force us to seek new routes and history has shown us that adversity brings out the best in humanity. The potential of the human mind is beyond measure. To be a catalyst in the chemistry of breakthrough is a great honour. Just as the world celebrates Louis Brown as its first test tube baby, India celebrates Sanjay Kandasamy as its first successful pediatric liver transplant recipient.
Sanjay was born with biliary atresia, a disease of infancy that affects about one in 15,000 babies. When a baby has biliary atresia the flow of bile from the liver to the intestines is absent or blocked. The biliary system is a network of ducts and channels that drains bile from the liver cells to the gall bladder. Bile is then released to the intestines. Bile helps to digest fat and carry waste products for excretion. In biliary atresia, it gets trapped inside the liver causing damage and scarring that leads to cirrhosis. As the liver becomes scarred, it presses against the walls of the veins and blood cannot pass through them properly. The result is portal hypertension (high blood pressure in the portal vein). Biliary atresia in 1997 was a death sentence in our country and most parts of the world.
Survival beyond 1-2 years was unfathomable. The only hope was a Kasai surgery that helps re-establish bile flow from the liver to the intestine by joining the two directly. It has a dismal success rate if delayed beyond 2 -3 months of life. By the time a diagnosis was arrived at, most children would be too old for a favorable outcome. Even with a successful surgery, the child would ultimately develop liver failure over the years in almost 70-80% of the cases.
Sanjay developed jaundice a few days after birth. As the jaundice increased, he underwent investigations and a diagnosis of biliary atresia was made. He was referred for a Kasai operation and had the surgery at 62 days of life but his liver had already been damaged. He continued to have jaundice and also developed recurrent episodes of fever and abdominal distension. By 18 months of age, he had severe growth failure, was severely jaundiced, all swollen up because his diseased liver failed to produce appropriate protein leading to fluid accumulation in his body.
His only hope for survival was a new liver. His parents knew he didn’t have more than a few months at the most. Their doctors had mentioned the possibility of undergoing a liver transplant abroad. That option was way beyond their financial capacity. A liver transplant programme had been started at Apollo Hospital, Delhi around that time but the only child transplanted (who had received a cadaver liver which did not function) had not survived.
They were in a dilemma. Though the financial hurdle was overcome as the hospital was willing to do away with the charges, they were still unsure. They did not want their child to die suffering in hospital, far away from his native place and family. Should they allow him to live peacefully as long as he could? The thought that they could end up losing the few weeks that he had was heart wrenching. Would they be able to live with that guilt? A parent would have to undergo a major surgery to donate a liver segment. To subject oneself to a surgery that had never been done in India was walking a dark, unknown path. What if they ended up losing both their son and their partner?
Liver transplant was a difficult and unsure path, nevertheless, it was the one that showed a bleak ray of promise. Hoping against hope, they clung to that miniscule ray. With tremendous courage they swallowed all their fears and chose to risk all they had to give Sanjay a chance. After all, great love and great achievements involve great risk.
It was a decision they celebrate to this day when their son hugs them. His mother still finds it difficult to hold back her tears when she recollects his days in hospital. Sanjay had a very complicated postoperative course and was in hospital for 4 months after his transplant. He required prolonged ventilation, developed repeated perforation of his intestines undergoing surgery five times. He required high dose medications to treat liver rejection as his body’s immune system fought the new liver. Repeated surgeries and prolonged ventilation led to infection that was another challenge to overcome. But overcome he did, each and every hurdle that was thrown his way.
Today, 22 years down the line, he aspires to be a surgeon himself having already completed his medical graduation to become a doctor. He continues to inspire families facing the transplant option and doctors when tough clinical scenarios daunt them. He is truly the path breaker.
The Clinical Perspective Sanjay was the first child to undergo living related liver transplant in India. He developed one complication after another. The transplant surgery itself had been successful with the graft and blood vessels well taken. To lose a patient to surgical issues in other organs would have been very painful. Sanjay underwent multiple other abdominal surgeries, each a potential threat to his life and our transplant programme. |
Consultant Pediatric Gastroenterologist & Hepatologist, Indraprastha Apollo Hospital
December 23, 2023
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