Raphael K.

Biliary Atresia

I was born July 15, 2003 with the liver disease known as Biliary Atresia. My parent’s first suspected something was wrong when they noticed that my skin and eyes were yellowing. They were soon told I had biliary atresia and as I slept fitfully in the hospital, my parents spent sleepless nights researching. With only 400 new cases each year, they were faced with my potential scarred bile ducts and poor liver function. My success in coming out of this was first determined by the Bilirubin scale measuring the dysfunction of the liver. The scale showed that the dysfunction was steadily increasing. A Kasai Procedure was done when I was 5 weeks old and showed that my liver was not functioning. It was then determined that a liver transplant needed to occur.

My parents’ sense of right and wrong was tested; what caused this, why was I affected, and what did it mean for our family? However, they soon met the “team” consisting of Dr. Emre and Dr. Schneider and their words eased my parents’ worries. On January 29, 2004, at 6 months old, I received a successful liver transplant. My parents remember sitting in the waiting room and seeing Dr. Emre come out. He told them that “the transplant went very well, he is doing well, and you can see him soon.”

They weren’t out of the woods yet though as the next months and the rest of my life would be a journey of good moments and bad. As you can imagine, at the time I had no idea what was going on. But, as I got older, I became increasingly aware of what life with a new liver really meant. My reality requires strict structure, and I am constantly challenged to respect those boundaries. I see my transplant surgeon yearly and monitor my health continuously. I take no artistic license when it comes to my safety, whether that means being careful with contact sports, staying away from sick people, or carrying my medical information in case of emergency.

Having a transplant doesn’t mean I live abnormally. Yet I better understand how I fit into my surroundings, making me more aware of little details—not just the big picture. Today, I am a liver transplant recipient. But I am also a son, brother, athlete, photographer, volunteer, and student. Having a transplant allows me to look at the world differently allowing me to embrace the multiplicity that surrounds my life. I am thankful for doctors and nurses that were by me and my parents’ side as they went through this process 17 years ago. I am also thankful for my liver transplant and the semi-structured path it has taken me down.

No matter what comes next, each day is an opportunity to see the world through a new lens, to experiment with the settings, and decide my perspective.