Our son Nicholas was diagnosed with biliary atresia in 1994, when he was 8 weeks old. His story begins the way it often does with this disease. He was a full term healthy baby and until the day of his 2 months check-up we had no idea there was anything wrong. He was such a beautiful baby — chubby, content, and sweet as could be. But on the day of his check-up the pediatrician could see that something was seriously wrong. “Hmmm.. Does he look jaundiced to you?” I think as long as I live I’ll remember those words and the sudden tension in the room as he examined Nicholas. I could feel it in the air.
Nick was 9 weeks old when he had the Kasai procedure at Children’s Hospital of Michigan. Afterward, I remember looking out his hospital room window and being startled by all the activity on the street below — buses, cars, and people going about their business. It upset me. Didn’t they know the world was ending? No, of course they didn’t, but it sure felt that way to me. Anyone who’s been through this experience, knows exactly what I’m talking about. One moment we had a beautiful, bouncing baby boy and the next moment our son had a life-threatening liver disease. It was almost too much to bear. How did this happen? Did we do something wrong? What will we tell our other children? Will the Kasai procedure work or will he need a transplant right away? Waiting, hoping, praying, bargaining, agonizing… Unfortunately there’s no good way to predict what will happen. Only time will tell and waiting was the hardest thing we’ve ever had to do.
As it turned out, Nick’s Kasai was successful and his bilirubin has been normal or nearly normal ever since. He has portal hypertension and his ultrasounds show evidence of cirrhosis. The left lobe of his liver is atrophied. Doctors describe his spleen as “massive” and his WBC and platelets are quite low. Recently he was found to have esophageal varices that need to be closely monitored. But in spite of all that, Nick is doing GREAT. There’s just no other way to describe it. He’s handsome, tall (6′1″), solid and healthy-looking. He loves playing the guitar, video games, and chillin’ with his homeboys. He can spend hours upon hours fiddling around with Adobe After Effects. Like many 15-year-olds he thinks school is drudgery, but we’re pleased with his grades. His favorite subject is Spanish.
Nick sees his liver doctor every 3-4 months. Medicines and blood tests are part of his routine and he takes it all in stride. He’s never asked “why me?” and he seldom complains. He doesn’t feel sorry for himself. For him, it’s just the way things are. His one regret is that he can’t play football. He loves to toss the football around and he’s got a heck of an arm.
It makes us so proud and happy to see the way he’s growing up. When he was a baby we worried that biliary atresia would ruin his happy childhood. It has not. He’s a happy-go-lucky kid. He’s a kind and gentle person. If you asked Nick to list 10 things about himself, he would not think to mention biliary atresia. And that’s just the way we always hoped it would be. 
{ 1 comment… read it below or add one }
Hello,
Our daughter has biliary artresia and had her Kasi done when she was an infant. She is now almost three and going strong no problems. We just got back from her liver dr in Portland Oregon, yesterday. Don’t have to see him for another year so that is great!! It is nice know there is someone in our state who has gone through something similar. I as a mother have always feel very alone and isolated through this experience. Thanks for telling your story about your son Nick it gives me hope with our daughter. We are from Central Oregon. Take care. Jenny