Evelyn Ryan has always seen the world a little differently.
Born with a life-threatening congenital heart defect called hypoplastic right heart syndrome, she experienced her first open-heart surgery when she was just three days old, and underwent three more over the next three years. Twice, she was connected to a machine that took over the work of her heart and lungs—a treatment known as ECMO, or extracorporeal membrane oxygenation.
“I took my first steps while tethered to an oxygen tank,” Evelyn said.
It was clear that Evelyn’s heart would not sustain her. So Evelyn’s care team pursued the only option they had left: They listed her for a heart transplant.
In 2004, Evelyn received her new heart. Her surgery was the 500th heart transplant conducted by the transplant program at University of Minnesota Medical Center, which has a long and robust history as a pioneer in the field of organ transplantation.
“Evelyn’s story is a dramatic case of a child with a severe heart defect. Though she was really sick for the first few years of her life, she has gone on to live a normal life after transplant,” said University of Minnesota Health Pediatric Cardiologist Rebecca Ameduri, MD, who has managed Evelyn’s care for more than 10 years. “She has been cared for at our hospital since she was born, and we’ll continue to follow her as she transitions into the young adult congenital world.”
It has been 15 years since her heart transplant, and Evelyn, now 18, leads a full and active life. She loves the arts and spends lots of time acting, singing and writing. Preparing to graduate from high school, Evelyn is juggling advanced coursework and extracurricular activities, and she plans to go to college in the fall. She intends to major in creative writing and minor in psychology.
She visits the Heart Center at University of Minnesota Masonic Children’s Hospital every six months for a checkup and has follow-up imaging studies once a year to monitor her heart. Day to day, Evelyn has very few limitations and is largely symptom-free.
As she prepares to enter college, Evelyn is determined to maintain her heart health. To support Evelyn’s goals, the team at the Heart Center is helping educate her about her healthcare needs so that she can manage her own health without relying on parents or family members. Though Evelyn’s care is tailored to her unique needs, this transitional process is one that Heart Center experts like Rebecca Ameduri, MD, undertake with many of their congenital heart defect patients as they enter adulthood.
“Her story is a great example of our full-spectrum approach to congenital heart defect care. We have the capability to provide complex heart care and surgery for infants and children, but we don’t stop there. To ensure our patients’ success, we provide follow-up care all the way to adulthood and throughout their lives,” Ameduri said.
Among her long-term goals, Evelyn aims to become a published book author. “I want to write the book for younger me—the book I wish I had,” she said. “I had no idea what all of this heart stuff was about, and there weren’t resources for my disease that were written for people my age.”
In addition to writing a book for kids with congenital heart disease and heart transplants, Evelyn wants to become a certified child-family life specialist. She hopes this career path will allow her to merge her creative passions and interest in psychology with her own experiences and love of children.
“[Child-family life specialists] were always my favorite people in the hospital,” she said.
Helping patients like Evelyn reach their goals is a passion for Ameduri and her colleagues.“For our team, it’s so satisfying to see someone like Evelyn—who was so sick in infancy and early childhood—to be doing so well 15 years post-transplant,” Ameduri said.