The holidays are a special time for many, but for Raine Keir, Christmas is truly the most wonderful time of the year. Her story, however, actually starts a month earlier, when Sonya White, her aunt and legal guardian, took her to see a pediatrician for a routine checkup when Raine was just a few months old. “I had just been asked by my niece to raise Raine, and I happened to be taking her in to the doctor,” Sonya said. “The pediatrician immediately noticed her skin color was off—something we had never thought anything about.”
The doctor planned to have Raine come back for blood work to investigate the cause of her jaundiced skin, but unfortunately, she became very ill later that week and was taken to a local emergency room. Four hours and many tests later, they confirmed she had a serious problem with her liver. The ER doctors thought she might have biliary atresia, a blockage in the ducts that carry bile from the liver to the gallbladder. Surgery seemed imminent.
The family decided to get a second opinion at Children’s of Alabama, and a biopsy revealed more details. Raine not only had neonatal hepatitis (inflammation of the liver), but she had also developed scarring in her liver which was irreversible. In Raine’s case, it was quite advanced. “Her doctor at Children’s told us that pieces of her liver broke off like chalk when they tried to do the biopsy,” Sonya said. “Raine had much more of an extensive problem than we even realized.”
Raine needed a liver transplant, but there was one major roadblock: Sonya, though serving as Raine’s guardian, did not have legal custody, which meant she could not give consent for treatment. Due to Raine’s advanced liver disease, time was of the essence—the family had a very short time frame to get custody of Raine, which would allow them to sign consent for treatment for a liver transplant. “With the help of Children’s, it all miraculously worked out,” Sonya said. They rushed home, hired a lawyer and were able to prove the serious and critical state of Rainie’s situation because the team at Children’s had accurately diagnosed Raine’s condition. The social workers, doctors, nurses and others walked the family through the medical and legal steps necessary to get Raine the help she desperately needed.
While Raine waited for the transplant, doctors placed her on multiple medications to extend the life of her liver and keep her alive. Even though getting custody worked out quickly, the family was told that it could take up to two years for her to get a liver. But just two weeks later, in December 2008, the family received the phone call they were anxiously awaiting: A liver was available, and it was a match. “On Dec. 24, we got our Christmas miracle, and Raine was taken into surgery for her liver transplant,” Sonya said. “We couldn’t have received a better Christmas gift.”
Managing a transplant, however, is a life-long journey requiring routine care to monitor for potential complications from the transplant or side effects from medications. At age 5, doctors determined that Raine had developed scar tissue from her transplant. The scarring was in her bile duct and caused the bile in her liver to collect above the scarred area, causing an infection. The infection spread to her blood stream, and she became septic. She was able to undergo a special procedure through interventional radiology called a percutaneous transhepatic cholangiogram. This procedure corrected the scarred area, allowing her bile to flow normally again. However, she was critically ill from the sepsis and spent a week in the pediatric intensive care unit until her infection cleared. “It nearly took her life,” Sonya said. “She has been through so much, and when I think about what God has done for her, it brings tears to my eyes. She is a living, walking, talking miracle, and I know God has huge plans for her.” Raine was discharged home on a few extra medications after that event, and she was able to return to her normal life.
Now 14 years old, Raine is thriving as a typical teen and visiting the transplant team at Children’s only twice a year for checkups. Sonya knows that there is no guarantee for the future for any of us, but Raine’s transplant is allowing her to make her future whatever she wants it to be, and the family is grateful for the life-saving care Raine received at Children’s. “I will never be able to thank the doctors and staff at Children’s for the time and care that they have given Raine,” Sonya said. “It’s hard to even put it into words the gratitude we feel toward them. Raine has essentially been a child of Children’s her entire life, so everyone there is literally like family to us—a wonderful, caring family.”