Biliary Atresia

In January of 2018 at two months old, our son Will was diagnosed with Biliary Atresia; a condition where the bile ducts do not function properly and bile backs up into the liver resulting in liver failure. Two weeks later, he underwent a seven hour procedure in an attempt to recreate bile ducts using a portion of the intestine. Unfortunately, the liver was too cirrhotic and a transplant was his only option for a healthy life.

From February to May of 2018, baby Will spent most of his life in hospital battling an intense build up on fluid in his abdomen, failure to thrive, and a variety of other health issues. In May of 2018, we made the decision to temporarily move our family of four from our sweet little town of Hernando to Washington, D.C. so that Will could be listed for transplant.

After only two weeks on the transplant list, we received the call that a liver had become available from a deceased donor. This gift of life was a precious one that ultimately saved our child. However, we struggled when people would congratulate us on this major event for our son when we knew that another family had to experience the loss of a child in order for Will to have a good chance at life.

Will experienced some complications with clotting immediately post-transplant which resulted in him having to be opened up surgically three times within 24 hours, but ultimately the transplant has been a success. Will spent just under three months in the PICU and much of that time was spent on a ventilator because of his weakened diaphragm. We worked hard together as a family and in conjunction with doctors and rehab specialists to get Will to all of his baby milestones all while living in the PICU and we spent as much time together as a family as possible for our sake and for our 5 year old daughter.

We were cleared to bring Will home to Hernando in September of 2018. Today he is a happy, healthy, curious, and rambunctious little boy!

We are eternally grateful for the donor and her family who made the choice to save a life and we think of that family daily. As a family we want to help to promote organ donation because both living and deceased donor avenues can save lives.

Last updated on August 5th, 2022 at 01:56 pm

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