December 1st is National Biliary Atresia Awareness Day!
A few weeks after birth, our son was diagnosed with an exceedingly rare liver condition called Biliary Atresia (BA). This disease affects the bile ducts, resulting in the rapid destruction of liver cells, cirrhosis, and liver scarring. BA affects about 1 in every 15,000 infants, and most require a liver transplant within their first year of life to survive. Currently, there is no known cause and no known cure.
We wanted to share a bit of James’ story to bring awareness to biliary atresia. Before receiving his diagnosis, we had never heard of BA before, and we only knew a bit of how the liver works. I remember the day we had an evaluation. The doctor was very patient with us and explained everything in detail. However, the more we discussed our son’s condition, the more terrified we became. No parent ever wants to hear the word “transplant” for their newborn.
Battling BA can be scary and traumatizing for kids. But there are many programs available to make their experience less frightening. Throughout James’ journey, he participated in the Beads of Courage program. It is designed to support and strengthen children and teens coping with serious illness and their families. James received colorful beads that serve as meaningful symbols honoring his courage displayed along his unique treatment path. He has one string for his pre-transplant journey and one for his post-transplant journey.
Since the transplant, James’ new liver has been working perfectly. He is the happiest and sweetest kid you will ever meet. BA does not come with a manual, and it does not come with a happy ending. James will continue to battle BA and deal with the effects of it for the rest of his life. But thanks to his Living Donor, Auntie Elise, he has been given a second chance and a new start in life. We are forever grateful for his donor, the incredible hospital staff, and of course, our family and friends who helped us get through.
BA Warriors never fight alone. They always have an army of family and friends to support them along their entire journey.
I love that your sharing your story as a parent. I have Biliary Atresia and it’s really hard for me to talk about these things and what I’ve experienced as someone who has it. My parents don’t tell me much at all, so it’s nice to see what other parents have to say about their experiences with having a kid that has this rare condition.
I love that your sharing your story as a parent. I have Biliary Atresia and it’s really hard for me to talk about these things and what I’ve experienced as someone who has it. My parents don’t tell me much at all, so it’s nice to see what other parents have to say about their experiences with having a kid that has this rare condition.