Ellen’s Story
STRONG LIKE A MOTHER
When Bakari and Ellen Sellers found out they were expecting fraternal twins, Stokely and Sadie, they were over the moon excited. Ellen’s pregnancy was normal and both babies thrived until shortly after birth when their daughter, Sadie, presented with newborn jaundice. At 11-weeks old, Sadie’s doctors performed a procedure to flush her bile ducts in hopes of removing the bile being trapped in her liver. About an hour into surgery, doctors notified Bakari and Ellen that Sadie had biliary atresia (BA), a rare liver disease affecting newborns and required a Kasai procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby’s own intestine to function as a new duct. Unfortunately, that also failed her and her only hope for survival was now a deceased donor liver transplant. Ellen said, “I truly didn’t realize the severity of Sadie’s disease. When we received that call from the doctors while in the waiting room, we were in shock and emotionally distraught.”
FAST FACTS ON BILIARY ATRESIA
- BA only occurs in newborns
- BA affects one in every 8,000-18,000 live births worldwide
- BA is slightly more common in female infants with Asian or African American heritage 1
- Two-thirds of children diagnosed with BA will need a liver transplant sometime during childhood
STRAIGHT SURVIVAL MODE
Ellen continued, “when Sadie got out of surgery that day, I went into straight survival mode. I was consumed with gathering all the information I could to understand what was going on. Sadie’s twin brother, Stokely and teenage sister, Kai needed me – I wanted to be everything to everyone but Sadie needed me the most. I was laser focused giving her my all as a mother.”
Ellen is an active member of the American Liver Foundation’s (ALF) National Board of Directors as well as Co-Chair, with husband Bakari, of ALF’s National Legacy Gala. She is passionate about raising awareness around BA and organ donation as well as funding programs that will educate and aid other families. Ellen said, “ALF gives me a larger platform to educate and advance care for pediatric liver disease along with advocating for more living donors.”
SO MANY MISCONCEPTIONS
Ellen said, “Sadie’s diagnosis has made me more appreciative of the “small wins” in life. Before her diagnosis, I felt very aware and willing to help families in need but until it’s your baby and you’re in the trenches with them, you can’t even begin to understand their pain. There are so many misconceptions around liver disease – someone actually asked if I drank alcohol during my pregnancy – and I want to help the public become more knowledgeable. No mother should ever feel like they purposely gave their child liver disease.”
Today, Sadie is a happy, healthy toddler who has met all her major milestones. She goes to preschool three days a week and teachers say she is like a “little mommy” herself, especially when it comes to her twin brother, Stokely. Sadie is down from 16 medications post-transplant to just one, twice a day. Ellen said, “it is a testament to her amazing doctors. We are thankful to the surgeons and doctors at Duke Children’s Hospital for helping save her life and we are forever indebted to the family who gave the gift of life through organ donation.”
Thank you for being a fierce mother, advocate and mentor, Ellen. Your passion and dedication to raising awareness and increasing help for families affected by pediatric liver disease is truly remarkable.
Parents of children with BA are encouraged to join ALF’s new “Life with Biliary Atresia Support Group” on Facebook. Click here to join and find support, meet with experts and share stories.
Last updated on June 10th, 2024 at 12:05 pm