COTA for Emma's Liver

Our Story

Our beautiful Emma Lynn was born in the afternoon on April 1st, 2025, weighing 7 lbs. 8 oz. We were so excited for the arrival of our baby girl, but just a few hours later she ended up in the NICU due to fluid in her lungs and she needed to be on oxygen for a few days. On April 4^th, we were able to take Emma home and her big brother was so excited! She was a little jaundiced, so her pediatrician put her on a Bili blanket at home to help with it, but it was nothing we hadn’t seen before because her big brother had to have the same thing. We thought her jaundice had gone away after that, but it still seemed to be lingering and getting worse every day.

Abbie felt like something wasn’t right and wanted to get Emma checked out, so Abbie and Kyle took Emma to the ER at Children’s Hospital Colorado in Colorado Springs. They started with labs and tests immediately. After the lab results came in, the doctors told them that Emma needed to get admitted to Children’s Hospital Colorado in Aurora because they specialized in liver diseases and her liver labs were abnormal.

Emma was scheduled the following Tuesday for a needle guided ultrasound and liver biopsy that would help determine the diagnoses. That evening we saw the words in black and white on the ultrasound notes we never wanted to see: “suspicious for Biliary Atresia”, a life-threatening liver disease that if left untreated would be fatal. On Wednesday afternoon the liver biopsy confirmed the diagnosis, and another needle-guided ultrasound and possible Kasai procedure was scheduled for 2 days later. This procedure removes the small irregular gallbladder and biliary tree and connects the liver directly to the small intestines.  It has a 65% success rate and is most successful around the age of 60 days (Emma was 59 days old).

We sat, spirits high, praying that her surgery would go well. After nearly 4 hours, we spoke with the surgeon who said the procedure went as they expected it, but that her liver was already very damaged. The doctors say most of the time by 3 months post OP they are usually able to determine whether or not the Kasai procedure was successful or not. At her 3-month post OP checkup it seemed like Emma was doing great and the doctor was very surprised that her numbers were pretty stable. However, just a few weeks later in September, Emma was admitted for Cholangitis; this is inflammation and/or blockage in the bile ducts. She spent a week in the hospital and went home with a PICC line to administer her antibiotics for two weeks. Emma was again hospitalized 3 weeks later for another bout of Cholangitis. She was again sent home with a PICC line to administer antibiotics for two weeks. She also received an NG feeding tube due to not gaining enough weight. 

Due to the Cholangitis her liver is severely damaged and now Emma is in need of a new liver. She is now on the list for a liver transplant.  Please keep our sweet girl in your prayers as we wait for a new liver and for the opportunity for Emma to live a long and healthy life after transplant.

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.