Patient stories

Havalah, 10

Havalah was born in 2003, small but healthy. When a month went by and Havalah failed to gain weight and blood tests showed some abnormal results, Havalah was referred to Children's Wisconsin for more testing.

The specialists at Children's performed tests including a HIDA scan, liver biopsy and cholangiogram, which showed that Havalah had a disease called biliary atresia. Children with biliary atresia have bile ducts that are injured, blocked or missing, so bile cannot flow from the liver to the gall bladder and intestines. Bile backs up into the liver and damages the liver, eventually causing liver failure.

"We took it for granted that our baby would be healthy," said Havalah's mom, Kristen. Doctors performed the Kasai procedure to replace the damaged bile ducts. But, the majority of children with biliary atresia will still need a liver transplant. Some children with biliary atresia need a liver transplant within the first two years after the Kasai procedure, other children live many healthy years after their Kasai procedures without needing a liver transplant.

After the Kasai procedure, Havalah's biliary atresia continued to progress, and she was placed on the waiting list for a liver transplant. At 26 months, she received her new liver. Despite experiencing an early complication called hepatic artery thrombosis one day after her transplant, Havalah was able to go home three weeks after her transplant. Today, in between her twice-yearly visits to the Children's transplant team, Havalah is a vibrant and active 7-year-old who loves to create arts and crafts and enjoys participating in gymnastics and swimming.

"Before this I didn't know the difference between the liver and the kidneys," said Kristen. "The doctors at Children's have been wonderful about empowering and educating me. They always make sure I understand what's happening and make me feel like I'm part of the team."

Evan, 21

When Evan was just 4 years old, his parents heard words they never thought they would hear, "Your child needs a liver transplant." Evan had been diagnosed with Alpha-1 antitrypsin deficiency that caused cirrhosis of the liver. Though the transplant went well, Evan later had complications and serious health issues, some life threatening. But, thanks to the great care Evan received a Children's, he just celebrated his 14th transplant anniversary.

Evan's mom, Julie, attributes his health to the care he received at Children's. "Evan would not be here now if not for the fabulous care that was and is provided by Children's," she said. "What more could a parent ask for than a physician who treats our children as if they were his or her own? That's what Children's has meant to us – care that meets our own standards as parents."

Today, Evan spends his free time playing the guitar. He is a freshman at the University of Minnesota where he studies music.