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 her life.

Evelyn was born on May 11, 2020 and came home just a few days later. We were told her first heart surgery would likely be around six months old, but as she began losing weight and struggling with failure to thrive, we knew we couldn’t wait that long. At just three months old, Evelyn underwent her first open-heart surgery at Children’s Minnesota in Minneapolis. We thought that would be the hardest part of her story.
We were wrong.

After more than a month in the hospital, Evelyn finally came home in September 2020. But at just seven months old, she was hospitalized again for a mitral valve repair. When the repair failed, she underwent a mitral valve replacement only one week later. That surgery caused complete heart block, requiring another operation to place a permanent pacemaker.
Three months later, we finally brought our baby girl home.

In April 2022, Evelyn was hospitalized with a pacemaker infection. The infected device had to be surgically removed. Then, on May 3, 2022, during her pacemaker reimplantation, Evelyn suffered a three-minute cardiac arrest after her heart was perforated.
Three minutes.
Those are three minutes we will never forget.
Her incredible medical team at Children’s fought for her, stabilized her, and saved her life. And Evelyn kept fighting.

As she grew, so did the challenges. Her mechanical mitral valve eventually became too small for her growing heart, causing mitral stenosis. On July 21, 2025, Evelyn underwent her second mitral valve replacement.
Four days later, she walked out of the hospital smiling. She was always stronger than we could have imagined.

That September, Evelyn started kindergarten. She was excited to learn, see her friends, and finally experience some normalcy after everything she had been through.

But shortly after starting school, Evelyn began complaining of stomach pain. We took her to the doctor, never expecting that we were about to hear the words that would change our lives all over again:
Evelyn was in heart failure.
Her heart function had fallen to an ejection fraction of just 20%. She was diagnosed with Dilated Cardiomyopathy, meaning her heart had become enlarged and severely weakened.

Evelyn was listed for a heart transplant as Status 1A, the highest priority status for pediatric heart transplantation.

Then, in May 2026, her heart became too weak to support her body on its own.
Evelyn was placed on a Berlin Heart, a mechanical circulatory support device that is now keeping her alive while she waits for a donor heart. The recovery was difficult. There have been complications, setbacks, painful procedures, long days, and nights that seemed to never end.

But Evelyn has continued to fight.
She has now been waiting for her new heart since September 2025.
And while she waits, she is still just Evelyn.

She is six years old.
She loves singing and dancing to KPop Demon Hunters.
She loves makeup, dressing up, crafts, sparkles, and anything girly.
She loves laughing.
She loves being silly.
She loves her family.
She has learned things no six-year-old should ever have to learn. She knows her medications, understands her machines, knows what her alarms mean, and has learned to advocate for herself during procedures.

Evelyn’s transplant journey is not going to end when she receives her new heart. The years following transplant will bring lifelong medications, frequent monitoring, appointments, testing, potential complications, and expenses that our family will continue to face.

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.