Biliary Atresia
There was nothing about her pregnancy that would have alerted Amy Bach to the medical problems of her newborn daughter Virginia. The only clue came a few days later when the little girl started showing symptoms of jaundice, a yellowing of the skin and mucous membranes caused by high levels of bilirubin. Bilirubin is a yellow substance that the body creates when it replaces old red blood cells. Usually, newborn jaundice is not harmful, and if treatment is needed, it is generally quite effective. But Virginia’s case was different. Her bilirubin count was much higher and her condition, much more toxic. Virginia was diagnosed with biliary atresia, a disease in which bile flow from the liver to the gallbladder is blocked. It can lead to liver damage and cirrhosis of the liver, which is deadly if not treated. Virginia needed a liver transplant, but in order to improve her chances of surviving the major surgery, the newborn needed to gain weight and grow. It was a challenge, given that Virginia was very sick and didn’t want to eat much of the time. In the meantime, Virginia needed surgery to connect the liver to the small intestine in order to drain the bile. The procedure helped her gain weight and get stronger. By March 2008, she was put the transplant list for a liver. Early one morning in June 2008, just two weeks before Virginia’s second birthday, the Bach’s received a call from Children’s Hospital. “It was just like you hear about. We got a call at 2:30 in the morning, and we were excited,” Amy says. The family traveled to UAB and prepared for surgery with mixed feelings of concern and hope. “It was an all day affair,” Amy recalls. “But immediately after she came out of surgery she felt better. Her color was better. She just seemed better.” It has been four years since her transplant surgery and Virginia continues to thrive. She still has regular checkups at Children’s Hospital to help boost her weakened immune system. But it hasn’t slowed her down. Virginia loves dancing and gymnastics, and will start Kindergarten in the fall. It is a milestone that makes the Bachs grateful. “This is her chance at life, and we’ve taken the ball and run with it,” she says. “And she has enjoyed every bit of this life.”
