Until you become a mother yourself, you don’t know what to expect. Sure, you have friends and family who are (or have been) young mothers – and you’ve seen plenty of picture-perfect social media posts about motherhood – but nothing prepares you for your own personal experience.
This is exactly what first-time mom and ALF advocacy volunteer, Courtney Peet, realized after the birth of her daughter, Sadie. Courtney said, “When Sadie was born, her bilirubin levels were high and, unlike most infants, they did not come down. All I wanted to do was sit at home and cuddle my baby, but instead we spent the first six weeks of her life in and out of doctors’ offices. Ultimately, Sadie was diagnosed with biliary atresia (BA), a rare liver disease affecting the bile ducts in infants, and at just 49 days old, she underwent a successful Kasai procedure.”
“In the beginning, I felt so alone.”
Courtney said, “We knew many other couples who were having healthy babies all around us and that is all we wanted for Sadie. Her diagnosis was so hard on me – it wasn’t what I expected my motherhood journey to look like and it brought on a lot of worry and guilt. I wondered if I had done something wrong during my pregnancy.” Many parents of children with BA may wonder the same, however research has shown that BA is not hereditary nor is it caused by anything a mother did – or did not do – during her pregnancy.
“Getting involved gave our family an outlet.”
Courtney said, “ALF was a great resource for us when we first started learning about BA. Getting involved in 2021 through the Liver Life Walk gave our family an outlet to advocate for Sadie and all those affected by liver disease. Since then, I’ve become involved with ALF’s advocacy efforts and have shared our family’s liver disease journey with local legislators to raise awareness and garner more government funding for liver disease research. If I could say anything to a fellow mother of a child with liver disease it would be, at times you’ll feel alone, but try to find your support system, whether that be other moms online or close family and friends, and always remember: you are not alone!”
ALF has many resources designed just for parents of children with pediatric liver diseases. Our newly launched Pediatric Information Center features disease specific information, patient stories, videos, activities and educational resources. A dedicated online Facebook support group, Life with Biliary Atresia and Beyond, also brings families together to network, share stories and build relationships that will last a lifetime.
Today, Sadie is a curious and vivacious soon to be four-year-old. She loves gymnastics, ballet and she will dominate you in a game of UNO. She’s also excited to become a big sister later this summer!
Thank you, Courtney, for being one tough Mother and for raising the bar on liver disease awareness. We are grateful for you and your family. For more information about pediatric liver diseases or how you can get involved in our advocacy efforts, please visit our website.