By Jennifer Walker-Journey
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 referred to Children’s of Alabama and 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 placed on 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. “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 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 of Alabama 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.”
By Jennifer Walker-Journey
Rashundra Howard knew something wasn’t right with her baby. Even though he was her first child, it didn’t seem right that Jashawn’s skin
was pale and his eyes were teary and weak. She took him to the doctor, and from there he was airlifted from his hometown in Phoenix City to Children’s of Alabama. That’s when doctors ran tests and discovered his kidneys had failed.
“I was in shock,” Rashundra says. “It was just scary.”
Jashawn had to go on dialysis to keep him alive. Three days a week, Jashawn underwent dialysis first at the hospital and then at home. But eventually he would need a new kidney. In the meantime, he needed to gain weight. He couldn’t get on the transplant list until he was at least 10 kilograms, or about 22 pounds. It didn’t take long. By January 2011, he was put on the transplant list. In March of 2012, Rashundra got the call that a kidney had come available for Jashawn.
“They called us that morning and said pack your bags because they had a kidney,” Rashundra recalls. It was a long, tough day, but almost immediately after surgery, Jashawn looked better, she says.
For people with kidney disease, a transplant can be a lifesaver, but the drugs used to help the body accept a new kidney can wreak havoc with the body’s insulin production. For some patients, like little Jashawn, it can cause diabetes in previously non-diabetic transplant recipients. Jashawn had to start taking medication for diabetes, but since surgery nearly six months ago, he is improving and beginning to wean off those medications.
Today, Jashawn is an active toddler. He’ll turn 3 on September 18, and has adopted a vibrant personality. “He’s doing well,” Rashundra says. “And we are all very happy.”
Sonya White could never have guessed the role she would play in the life of her great niece Raine Keir. Looking back, she says it’s been “scary ride, but this is a ride I’d do again tomorrow.”
Sonya and her husband spent a lot of time caring for Raine since she was born April 29, 2008. When she was 3 ½ months old, the Whites became her primary guardians. “We changed our whole lives around to care for her,” Sonya recalls.
The first sign that anything was wrong with the little girl came during a doctor’s visit, when Sonya mentioned Raine’s odd coloring. The doctor ordered tests and found her bilirubin to be unusually high. High levels of bilirubin can lead to serious health complications and may indicate a more serious problem with the liver or pancreas. Raine was scheduled to have more tests the following week, but before she could make that appointment Raine became violently ill.
Sonya rushed her to the emergency room, where doctors performed more tests. “I remember they came out and I’ll never forget it. They said Raine would have to have a liver transplant,” Sonya says. They were sent to Children’s of Alabama where, Sonya says, “Everything fell together.”
Doctors explained that Raine had developed hepatitis before she was born, but went undiagnosed even after birth. Her condition escalated into a liver disease known as biliary atresia, and then she developed cirrhosis of the liver. Her condition was dire. She was placed on the transplant list and told it could take up to two years for Raine to get a liver.
It took just a few weeks for a liver match to be found. On Christmas Eve 2008, just before her 8-month birthday, Raine underwent transplant surgery.
Today, Raine is an energetic 4 ½-year-old. Her health has dramatically improved. She still has regular checkups at Children’s and considers it her home away from home. “I cannot express how grateful I am to everyone at Children’s,” Sonya says. “They are family to us.”