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Kinley’s Story

Kinley was born in April, 2012. At her 2 month well baby visit the doctor was concerned that she was jaundiced and her liver felt enlarged. She was sent to Cardinal Glennon Children's Hospital for tests. On July 5th she was diagnosed with Biliary Atresia, a rare liver disease in which the bile ducts in infants are absent or damaged and bile backs up in the liver causing scarring, cirhosis, and ultimately liver failure. She had a Kasai surgery that same day to attempt to drain bile by attaching a piece of her small intestine directly to her liver. Kinley initially did well with the surgery. In August and September her lab tests showed that the Kasai may not be continuing to work as well as we had hoped. On September, 26th her doctor at St. Louis Children's Hospital determined that the Kasai had failed and Kinley would need a liver transplant.

     Kinley was officially listed for a liver transplant on November 9, 2012 when she was 6 months old. After waiting for a transplant for 6 months, Kinley's health had become stable and she was changed to and inactive status on the transplant list. She will need a transplant eventually.

Latest Journal Update

Summer Update

I don't always update after Kinley's doctor visits because there (thankfully) isn't always a lot to report. I've had several people ask about her lately, so I thought it would be a good time for an update.

Kinley had an ultrasound, labs, and a visit with Dr. Turmelle today. Kinley's bilirubin was up a bit, but not out of the ordinary for her. The main issue is that her portal hypertension is worse. Therefore, they want to do another upper GI scope, but they are ok with us continuing with our busy summer and scheduling the scope for this fall. Kinley's liver function remains stable, but the portal hypertension can cause varices that can rupture and bleed out. Kinley doesn't seem to have any breathing issues that can come along with liver disease so far, so that's good.

We were planning on meeting up with a family and baby boy named Lynden who had Biliary Atresia and is recovering from 2 recent liver transplants, but at our appointment, Dr. Turmelle noticed Kinley felt warm and her temp was 101.3, so we couldn't go and risk exposing Lynden to anything. 😟 Luckily we had already had labs and Dr. Turmelle didn't feel like her fever was liver related.

After Dr. Turmelle did her normal exam and drew lines on Kinley so she could measure her liver and spleen, Kinley discussed with her why she should write on paper instead of kids' bellies. 😀