I was born with a condition called Biliary Atresia, a rare and life-threatening liver disease in which the bile ducts, the channels that allow bile to flow from the liver to the gallbladder, are either blocked or absent. Without bile, the liver cannot effectively remove toxins from the blood, and over time, this causes irreversible liver damage. When I was diagnosed, the doctor told my mother with a heavy heart that there was no real cure. His advice was simple but devastating: “Take your baby home and make the most of the time you have left with him.”
My mother was heartbroken, as any mother would be, knowing that her baby might not live beyond a few months. But my mother had a fire in her spirit. She refused to accept that I had no chance. It was during one of the many long, sleepless nights at the hospital that she met another mother whose child had been diagnosed with the same condition—Biliary Atresia. This mother shared a glimmer of hope: her child had undergone a procedure known as the Kasai operation, a surgical technique that could potentially buy us more time.
The Kasai procedure involves connecting a part of the intestine directly to the liver to drain bile, essentially creating an artificial bile duct. It's not a cure, but if performed early, it could delay the need for a liver transplant and prolong life. My mom decided, with a leap of faith, that she would take me to have this procedure. It wasn’t easy, but she believed that I deserved every chance, no matter how small. I was placed in the hands of Professor Datuk Dr. K. Somasundaram, a renowned liver specialist. My mother thought we had found our miracle.
But miracles don’t happen overnight.
After the surgery, I didn’t get better right away. In fact, my mother spent months in agony, sitting by my hospital bed, watching other doctors visit their patients diligently, while Professor Somasundaram was often absent, occupied with his many other responsibilities. Days would pass without her seeing him, and her hope began to dwindle. She would see other babies being attended to, doctors explaining their progress to concerned parents, but for me, the visits were rare. She began to wonder if she had made a mistake. Maybe she had put too much faith in a procedure that wasn’t going to work. Maybe she had put her baby in the hands of a man who didn’t care as much as she did.
But then, after six long months of waiting, something changed. One morning, the nurses noticed something—my skin wasn’t as jaundiced as before. The bile that had been trapped inside my liver for so long was finally starting to flow. I wasn’t out of the woods, but for the first time, I was showing signs of improvement.
When my mother saw the test results and realized what was happening, she cried out in joy for the first time since my diagnosis. She had been holding her breath for months, waiting for a sign that all her sacrifices, all her prayers, had not been in vain. She had fought so hard for me when the world told her to give up, and now, at last, there was hope.
But my battle with Biliary Atresia was far from over. Though the Kasai procedure had bought me time, it was not a permanent fix. My liver would still struggle, and the threat of cirrhosis, liver failure, and the need for a transplant loomed large over my future. There would be more hospital visits, more sleepless nights, and more moments of doubt. But my mother, who had refused to give up on me once, was ready to keep fighting for me, no matter what the future held.
For now, though, she allowed herself to smile. We had won this round, and that was enough.
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