COTA for Evelyn's Heart

Our Story

At our 20-week ultrasound, we learned that our daughter, Evelyn, had an Atrioventricular Septal Defect (AVSD) — a congenital heart defect that would require surgery early in life.

Evelyn was born on May 11, 2020, and went home just a few days later with many follow-up appointments. We were told her first surgery would be around six months old, but as she began to lose weight and became failure to thrive, her first heart surgery came much sooner — at just three months old, at Children’s Minnesota in Minneapolis.

That was only the beginning. After more than a month in the hospital, we went home in September 2020. But at seven months old, Evelyn was admitted again for a mitral valve repair, which unfortunately didn’t work. A week later, she underwent a mitral valve replacement, which led to a complete heart block, requiring yet another surgery to place a pacemaker. After three long months, we finally went home again in March 2021.

On Easter 2022, Evelyn was back in the hospital for a pacemaker infection. She underwent surgery to remove the infected device, and on May 3, 2022, during her pacemaker reimplantation, she experienced a cardiac arrest lasting three minutes due to a heart perforation. Miraculously, her incredible team at Children’s stabilized her and successfully placed the new pacemaker.

Since then, Evelyn has been closely followed by her medical team. In May 2025, she had a heart catheterization to measure the pressures in her heart and lungs. Because she has grown but her mechanical valve has not, she developed mitral stenosis, meaning the valve was too small. On July 21, 2025, Evelyn underwent her second mitral valve replacement, and just four days later, she went home — strong and smiling as always.

Evelyn started kindergarten this September, excited to learn and see her friends. But shortly after, she began having stomach pain and asked us to take her to the doctor. When we arrived at Children’s, we learned Evelyn was in heart failure with an ejection fraction of 20%. She was diagnosed with Dilated Cardiomyopathy, a condition where the heart’s main pumping chamber becomes enlarged and weak.

Evelyn is now listed as Status 1A — the highest priority — for a heart transplant. She remains stable while we wait for her new heart.

Through it all, Evelyn continues to shine. She is the most resilient, strong, and joyful girl we know. She loves singing and dancing to K-pop Demon Hunters, dressing up, doing makeup, and anything crafty. She truly is a girly girl with a heart full of courage and sparkle.

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.