Six-month-old Kinley Hildebrandt has been in hospital since Friday. It’s a situation the infant and her mother Candis Thronberg are all too familiar with.
Kinley has biliary atresia, a rare condition that doesn’t allow bile to drain from the liver, which damages the organ. She and her mother have made countless trips from their home in Kindersley, Sask. to Royal University Hospital in Saskatoon since Kinley was diagnosed.
“It kind of breaks my heart knowing she has to deal with it all the time and she’s uncomfortable and I can’t take that away from here,” said Thronberg.
Doctors didn’t detect the disease until after Kinley was two-months-old, and even then the diagnosis was a difficult call to make.
“It’s scary because as soon as we got to the hospital that night, they said it could be this, it could be that. They’re throwing all these different things at you,” said Thronberg.
The disease is usually not diagnosed for a few months because the symptoms are so vague. Jaundiced coloured skin and pale stools are often the only sign something is wrong.
About one in 10 to 20 thousand babies are born with biliary atresia. It’s not known what causes the disease but there are a few treatment options. Many, like Kinley, undergo a surgery to help bile drain from the liver, but often damage to the liver is extensive and the only option is a transplant.
“If not treated, it’s life threatening,” said Dr. Edmond Lemire, a geneticist at Royal University Hospital. “The liver is an important organ required for survival and if the liver does not function, the patient will die.”
It’s a reality Thronberg knows she may have to face. For now, she’s taking it one day at a time. Her message to other parents is to keep a close watch on subtle things that don’t seem right with their baby. She says it’s been a tough last few months but says she couldn’t imagine not having this little face looking back at her, each and every day.
“She’s amazing. From the moment she was born, she’s just been so special.”
