Krew was born November 22, 2023, via cesarean. We had amazing care in the hospital and we were so eager to take our perfect boy home. Routine bloodwork and a pediatrician, that truly cares and is diligent, discovered that Krew had a very high bilirubin. That being said, after multiple tests, ultrasounds, and numerous doctors’ appointments we were referred to a liver specialist at Children’s Mercy. Although we were educated on what could possibly be wrong with our son, we wouldn’t get a definite answer unless Krew underwent surgery… so he did. At 5 weeks old Krew had a Kasai procedure. This procedure consists of creating new bile ducts out of the intestines and attaching them to the liver in hopes that the liver will drain. After 7 hours of surgery we heard the diagnosis, Biliary Atresia. Hearing the diagnosis finally gave us an answer but immediately showed us how life-altering things were going to be. During our week stay in the hospital, we had multiple trainings and learned all the signs and symptoms of an infected or failing liver. We have been on high alert ever since.

There is no reason as to why this disease happens, it just does and if it’s not caught fast enough, it could be too late to help your child. Luckily with an amazing liver team, we caught it in time and were able to get him some help. For that we will forever be thankful.

The Kasai Procedure is considered a success until it’s not. Basically, it is a band aid to get Krew by with his own liver until he needs a new one. Now here we are…

December 4, 2024, our daughter Maeve, was born. After a stay in NICU with Maeve and seeing Krew for the first time in days, we knew our boy wasn’t acting right and had a slightly distended stomach. On December 31, 2024, we rushed Krew to the ER as he had a high fever and showed signs of a liver infection. We spent 4 hours in the ER before he was flown to Children’s Mercy KC, with his father by his side as mom and Maeve were driving the 5-and-a-half-hour distance. This hospital stay lasted a few days but was really hard on us for multiple reasons. One, it had been discovered that not only did Krew have a slight liver infection but had Human Metapneumovirus (similar to RSV). Two, Mom stayed at an AirBnB with Maeve who was less than a month old and Dad stayed with Krew in the hospital. We truly felt torn as parents not being able to enjoy our newborn yet doing everything we could to get Krew help.

Through the month of February we battled a large distended belly. Doctors’ orders allowed us to treat the belly at home the best we could with medication. Krew’s belly remained distended and his discomfort was revealing itself after trying different dosages with medication.

March 4, 2025, the liver team wanted to get Krew in ASAP to have a paracentesis. During his procedure they drained 480 milliliters of fluid. The next morning, his belly looked very similar to what it looked like before draining. It was decided to repeat the procedure that day, but this time a drain was put into his belly to help reduce fluid noninvasively in the days to come. After a couple days in the hospital a total of 1,200 milliliters was removed. No hospital stay is fun, especially being 15 months old and being poked all the time, but Krew remained his ornery self.

Moving forward, our next adventure is March 17, 2025, when Krew begins his evaluation at Nebraska Med for a transplant. This evaluation consists of two very long days of appointments, ultrasounds, bloodwork, etc. From there, we will learn all things transplant. Do we go with the live donor option or does Krew get placed on the transplant list and more than likely wait till he is “sick enough” to meet transplant requirements?

None of these decisions are easy, yet Krew continues to get through it with his bright personality. As parents, we continue to remind ourselves that fear is a liar and God is with us. Romans 8:26 says, “God understands the cries of our hearts even when they are too deep for words.” Through all of this we have felt every single emotion. Every day we get with our son is a blessing as this disease can change the course of life at any moment.

In the end, Biliary Atresia will always be a part of our lives and everyone has a different story. But this is ours. Our reality.

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.