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UPDATE 8/16/24
Khloe's numbers are great & she is blossoming into a beautiful young lady. This child, her courage & spirit are a true blessing. She loves to camp in a tent in the backyard, chat with her friends, ride her bike & live life in a way she never dreamed possible. Thank you for all of your support!
UPDATE 12/22/21
On 12/19/2021 this beautiful child received the best Christmas gift ever... a new liver. In the early afternoon Khloe was taken in to surgery to replace her failing liver with a new donor liver. The surgery lasted more that 8 hours. In this surgery our little warrior lost LESS THAN 750ml of blood and required ZERO blood products. Normally, a newly transplanted liver will take about 24 hours to start working, but our girl Khloe has her new liver clipping right along before the surgeons even closed here up!
Jack and Amanda, Khloe's parents and Khloe will need to remain at Cincinnati Children's Hospital Medical Center for about 3 months while she heals.
Khloe & her daddy playing before surgery 12/19/2021
Khloe's Story
Khloe was born October 8, 2011 with a very rough start. Just 3 days old she started getting daily blood draws to monitor her bilirubin levels (this lasted until January). In December 2011 she was taken off breast milk and put on formula, because they suspected her jaundice to be from the breast milk. Complications led to the ER and after being hospitalized for a couple days and lots of tests, she was formally diagnosed with Biliary Atresia on January 13th.
Biliary Atresia is a disease of the bile ducts that affects only infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats. In biliary atresia, the bile ducts become inflamed and blocked soon after birth.
On January 19, 2012, at 3-1/2 months old Khloe underwent a risky surgery called the Kasai. We were in the hospital for a short period before being sent home to our new normal. Khloe's first year was very busy, confusing and stressful as we were in and out of the hospital just about every month from her getting infections and getting very sick from the littlest thing. It all seemed very unreal for the longest time, like we were in a movie. After her one year surgery anniversary, things started calming down and she leveled out to be stable.
Khloe goes to 2 different GI doctors. One in Akron, Ohio and one in Cincinnati, Ohio. The doctor in Cincinnati will be doing her transplant when a liver becomes available. She must travel 3 hours to go and see GI every month, unless there in a concern and then we go sooner.
We had a scare in the summer of 2013, when she started having unstable labs and just wasn't the Khloe we know. We went for a transplant evaluation and she was deemed not bad enough to be high up on the list. After she was listed she started to improve and go back to her normal. After that point, she has been stable and done wonderfully 99.9% of the time. We have had little bumps, but nothing that needed hospitalized for.
In the fall of 2020, she was found to be having issues that are only seen by MRI and ultrasound, because of this she went for the transplant evaluation where she was approved and again placed on the liver transplant list. This time they will be asking for extra points to move her further up the list to help her get the call sooner. Once she gets the transplant we will have to essentially live 3 hours from home in Cincinnati for at least 2 months until she is stable enough to come home. When we come home it will be lots of doctor visits to continue to monitor her liver levels to make sure she doesn't have any infections or rejection in her new liver. We have partnered with the Children's Organ Transplant Association (COTA) for assistance with transplant-related expenses.
Please donate to COTA in honor of Khloe by clicking the GIVE button . The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation's only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA's services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.
