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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

Upper GI Scope

Today Kinley had an upper GI scope because of signs that her portal hypertension is worsening. Her doctor was very concerned about possible varices (veins) that might be developing in her esophagus and stomach and the fact that they can rupture and cause internal bleeding. They were prepared to try to band varices if they found any large ones and IF Kinley's esophagus was large enough to fit the banding apparatus into.


Thanks to a Child Life Specialist, they were able to get an IV in without any crying at all. It was awesome!! I am asking for someone from Child Life every time she ever has to have an IV. Her anesthesiologist was awesome too. She came in and played and took time with Kinley and gained her trust so that it wasn't traumatic for her when she carried her back to the procedure room.


After about 35 minutes, Kinley's doctor came to show us pictures from the scope. They only found 2 small spots that they think might be varices, but they are very small and they said they were only grade 0-1. Grade 4 are the ones that would be very concerning and would have needed banded, therefore they did not have to treat them at all. They did biopsy her stomach and small intestine since they were in there because of some pain she has been complaining of, but we really aren't expecting any issues with that.


We, once again, thank God for helping us and blessing us along this journey.