This is Will

He’s the reason I started this site. When Will was 10 weeks old, his mother and I were getting ready for a company picnic. As we were getting our shoes on, my wife handed me him and I remarked that he was as hot as a blast furnace.

This prompted us to visit our primary care’s urgent care. Fortunately, his regular physician was on-call and was able to see us. After discussing Will’s fever, the doctor remarked at how jaundiced he looked. This was concerning because Will had just seen him two weeks prior for his 8 week well-child visit. Due to the doctor’s concern we went to the ER.

About four hours after we arrived at the ER, I first heard the term “Biliary Atresia”. Will was not yet diagnosed with the condition, but it was the only thing that made sense due to his symptoms:

• jaundice at 10 weeks
• light-colored (acholic) stools (the color of vanilla pudding, though these could have been grey as well)
• increasing irritability and lethargy from an otherwise calm and easy-going baby

The fever wound up being unaffiliated with biliary atresia, but I’m thankful for it all the same - it’s what got Will to the ER!

After nearly a week of tests and pokes and prods, Will underwent the Kasai Procedure. His mother and I hope this is the solution to this condition, and that he will not later require a liver transplant.

Update July 2018

Will underwent a liver transplant in December of 2017. He was placed on the transplant list as his condition rapidly declined. We were beyond fortunate that Will’s aunt volunteered to donate a portion of her liver. The surgery was successful and Will has been recovering ever since.

It is now Summer, 2018, and Will is living a wonderful life, experiencing all of the things an otherwise healthy child would experience. His greatest source of discomfort right now is the teeth that are coming in on his upper gum.

At times, it seems as though this ordeal is behind us as a family, but in fact that will never be the case. Whenever Will gets upset for no apparent reason, his mother and I worry it might be his liver. He has to take medicine twice a day for the rest of his life. His brother asks about his tummy scar. These are all things I gladly accept to have my little man.

Others aren’t so lucky. The Facebook Biliary Atresia page is rife with pictures and stories of children who weren’t as lucky as Will. My heart aches for the loss those families have endured. I fear that our family will endure a similar loss, but I try to focus on how that fear makes me appreciate every smile, every giggle, every cry, everything I get to share with Will.