COTA for Emma Dawn

Our Story

Meet Emma Dawn Guyer. Emma has had to endure a lot in her short life so far. She was born in February of 2022 at full term and discharged with a perfect bill of health two days later. However, toward the end of her first week of life things started to change. She became increasing colicky and jaundice with her pediatrician at the time being dismissive of concerns raised. After many countless visits and much persuading, bloodwork and a referral to a pediatric GI was ordered at 6 weeks old. Two weeks later upon meeting the GI specialist, Emma was immediately sent for further bloodwork and testing. Testing revealed elevated bilirubin/liver levels. With biliary atresia being suspected, Emma was sent to Dallas Children’s Medical Center where even more bloodwork, labs and tests were completed but there was finally an answer. Emma was diagnosed at 8 weeks old with Biliary Atresia.

Biliary Atresia (BA) is a rare liver disease that affects 1 out of 10,000 to 15,000 births in the US. BA is a condition in infants in which the bile ducts in and outside the liver are damaged and can’t flow bile. In Emma’s case her bile ducts were scarred over and her gallbladder was basically nonexistent. The bile ducts being scarred over causes bile to remain in the liver, where it starts destroying the liver cells. She underwent a surgery right after diagnosis, in April of 2022, called a Kasai procedure to try to correct the condition and prolong the life of her native liver.

Post-surgery doctors in Dallas and our new pediatrician at home closely monitored Emma and her liver number for the next three months to determine if the surgery worked. Unfortunately, at 5 months old the doctors deemed the Kasai procedure a failure. This left us with the only option of a liver transplant. After a long evaluation process, Emma was placed on the UNOS transplant list at 10 months old.

Emma has had the fortune of being considered stable while living with liver failure but is starting to see an increase in complications caused by her disease. Over the past two years she has been hospitalized for many things like cholangitis and asities. This increase in complications has led us to dual list Emma not only in Dallas but Colorado as well. In Dallas Emma is on the list for a deceased donor only and in Colorado is listed for living and deceased donor. This dual listing is increasing her odds of a match significantly. Emma is now two years old and continues to fight strong as we continued to wait for a matching donor and battle the complications of her disease.

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.