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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

Clinic visit October 2014

I haven't updated for quite a while. We had a good summer. Kinley is growing and is very vocal and active. It is really hard to believe at this point that she was at one time considered 'failure to thrive' and 'developmentally delayed'. She no longer has any trouble in those areas!!

When Kinley saw the doctor in July, she was concerned about signs that Kinley's portal hypertension was getting worse. That is an increase in pressure in the portal vein which is the result of blood not flowing through her cirrhotic liver like it should. Kinley's body has adapted to this somewhat by growing new vessels that reroute her blood flow, but it still causes a lot of blood to go through her spleen instead of her liver. This is causing her spleen to get bigger and bigger. As her spleen gets bigger, the platelets in her blood get trapped in the spleen and sort of gobbled up. This causes her to have less and less platelets in her blood so her blood does not clot as well as it should. Kinley has started to have nose bleeds which could be the result of her lower platelet count. The increased pressure in the portal vein can also cause the development of large, swollen veins (varices) within the esophagus and stomach. The varices are fragile and can rupture easily, resulting in a large amount of blood loss. We decided to wait a few more months and recheck things to see if her portal hypertension continued to progress. On a good note, Kinley had been struggling with Vitamin D deficiency despite being on very high doses of yucky liquid vit D. In July her levels were actually in the normal range!!

Yesterday we took Kinley back to St. Louis Children's for an ultrasound, labs, and to see the doctor again. Kinley's spleen is getting bigger, and her platelets continue to drop. Her doctor also thinks her abdomen is getting bigger because of her enlarged liver and spleen. I have also noticed more little veins visible on her face resulting from her portal hypertension. Her bilirubin continues to be fairly high too. Through all of this, her liver keeps chugging along, but the increase risks of bleeding can be very dangerous. Over the last year, we have been talking about doing an upper GI scope to take a closer look to see if there are any large varices in her esophagus that they need to band off to try to prevent a bleed. Before now, Kinley wasn't big enough for the banding equipment. I have been doing some research on this for a while. Some centers scope routinely, and others do not scope until after a child has their first bleed. I have discussed it with 3 of Kinley's doctors. I have talk to some parents of kids who have had scopes and bandings without bleeds and the ones I have talked to are glad they went ahead with the procedure. At this point Dr. Turmelle feels that the best option for Kinley is to undergo the procedure, and we have scheduled it for November 17th. It shouldn't be a big deal, but undergoing anesthesia for someone with a diseased liver is a little scary.

Kinley is an awesome patient I am adding a picture from her visit yesterday. We are still hopeful that her native liver will continue to sustain a high quality of life for her for a very long time. It is really hard to tell by looking at her that so much is going on in her little body. We have been very blessed so far and thank God every day!!