Written by Hilary Weidner, Liver Donor.
When Bea was a little baby she had Jaundice. Then her 2 month appointment with the pediatrician rolled around, I came prepared with a list of questions. One of the questions was to ask about the whites of her eyes and how they looked a little yellow.
Since Bea was my first child, I wasn't sure if this was normal for babies with Jaundice. My gut urged me to bring it up to the doctor. Once we did, she agreed that it was something to look into further and she sent us to have Bea get blood test. That night, she called with the results and said to go immediately to Cincinnati Children's Hospital, and that they were expecting us.
After we rushed to the hospital and checked in at 11:00pm, we were met by a liver doctor who started charting and drawing out what he believed was going on: biliary atresia. Not fully grasping what this potential diagnosis meant, I kept wondering, "When are they going to get her on an antibiotic so we can get out of here?"
As the doctor continued, I realized we would be there for a while. We stayed up with him until 3 or 4 in the morning discussing biliary atresia, what it meant for Bea’s future and what this meant immediately for Bea. How could this happen to us? We had a baby who acted perfectly normal and now we are talking about a potential liver transplant in her future. We were devastated.
Things turned for the better after we went through the process of determining if either my husband or I was a match for Bea. When I discovered that I was a match, it was one of the best days of my life. Finally, after waiting for months, we could actually DO something to help fix this problem.
I can't wait to share with Bea about what she has been through to show how strong of a girl she is. Through her journey she has also inspired so many people to donate money towards the research of biliary atresia and that is absolutely something she should be proud of.
I was always an organ donor but for no other reason than I said "yes" one year when I renewed my license. I had never really thought about organ donation until I started working with a client, Life Center Organ Network.
About a year before Bea was diagnosed, I spoke at their national conference about how social media is an incredible platform to help recruit much needed organ donors. It wasn't until then I started learning about the vast gap between organs available and those waiting. Now, I have made it my mission to spread the word about "checking the box" for organ donation.
We, Jordan, Bea, and I, were lucky. I was a match for Bea and was able to donate as her mom. But what would have happened if she didn't have a match? Would she still be waiting? There are thousands of kids that are in the pediatric intensive care unit (PICU) waiting for new organs, and will hopefully not become too ill to receive them once they are available. What about those children? What about their families? What about their moms and dads? THAT is what keeps me up at night. The children that are still waiting. If we can share our story and change the outcome or speed up the process for ONE child - we will have made a difference.