On St. Patrick’s Day 2021, Jonah turned 2 months old. The next morning was his regularly scheduled wellness check, and we were excited to see how big he had grown over the last month. We had some questions for the doctor, as most parents do. Little did we know, the answer to one was to go home, pack up, and head to University of Maryland Children’s Hospital.

After an evening in the ER full of pokes and pricks, we settled in the Pediatric Care Unit preparing for an operation to occur ASAP the next day. Of course, to add the chaotic day, only one parent could stay the night due to COVID visitor policies.

On Friday, March 19, Jonah was diagnosed with a rare liver disorder, Biliary Atresia, which affects about 1 in 20,000 infants. Upon diagnosis, the surgeons performed a Kasai procedure to treat his messy anatomy to better support the health of his liver. Currently there is no known cause or cure for Biliary Atresia.

After only a few months, doctors determined Jonah’s Kasai had failed and he would need a liver transplant. Mom and Dad were both evaluated at MedStar Georgetown University Hospital to be considered for living liver donation. Thankfully, both matched but Mom was a perfect fit. Exactly five months after diagnosis, on Thursday, August 19, Jonah received his liver transplant.  

Recovery is not a linear path. Just after transplant, Jonah required another surgery to repair a new, small leak in his small intestine. Jonah and his liver will always be poked and pricked to monitor his health, but we are grateful for his team of medical professionals, family and friends who support us through the journey. 

We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with a lifetime of transplant-related expenses. Please consider donating to COTA in honor of Jonah.

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.