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Minnestota Adult Congenital Cardiac (MACC) Program
A Child at Heart
Amy Wynia was born with serious heart problems. Now a healthy adult, she's part of a group of adults with reconstructed hearts who still need care. Children's of Minnesota is preparing to care for this new generation.
By Ginger Buxa Plumbo
Just a few decades ago, babies born with congenital heart disease rarely survived beyond infancy or early childhood. If they did reach adulthood, it was nothing short of amazing.
Amy Wynia was one of those amazing babies. Immediately after her birth in 1973, and again at ages 5 and 15, she endured surgery on her heart. The last two surgeries took place at Minneapolis Children's Medical Center, which is now the Minneapolis campus of Children's Hospitals and Clinics of Minnesota.
Now a healthy, active adult, Wynia represents a new generation from a medical standpoint. She's among a growing group of adults who were born with heart defects, received treatment as children, and now need specialized care for their reconstructed hearts.
Children's of Minnesota is developing a program of care for these adults, who still need the expertise of pediatric cardiologists and surgeons familiar with their heart defects.
A blue baby who needed surgery
Wynia was born with a heart defect called Tetralogy of Fallot. It's among the conditions sometimes called "blue baby" syndrome because the infant's skin looks blue from a lack of oxygen in the blood.
Tetralogy of Fallot combines four abnormalities: a ventricular septal defect (a hole between the ventricles); pulmonic stenosis (a narrowing of the valve leading to the pulmonary arteries); the position of the aorta (the major artery from the heart to the rest of the body) over the ventricular septal defect; and the presence of thickened muscle tissue in the right ventricle, making the heart work harder to pump.
Wynia's first surgery took place at the University of Minnesota Hospital when she was less than 24 hours old. The cardiac surgeon created a connection between the aorta and the artery to the lung, providing more blood flow. This improved her color. Wynia's physicians knew that she would need more surgeries later on. As she grew, so too, would the strain on her heart.
By the time she was 5, Wynia's heart needed a more complete repair. Surgeons at Children's closed the hole between the two lower chambers of her heart. They also removed the muscle obstructing blood flow to the lungs, opened up the pulmonary valve, and closed the surgical connection of the lung artery and aorta created when Amy was a newborn.
Wynia spent several weeks in the hospital. "That was the hospital stay that changed my life in so many ways," she says.
She recalls her mother's elation at how much more energy and spunk she had. "I remember my mom saying I was a totally different kid because for the first time, I could keep up with the other kids. As a result, I became more outgoing and more active," Wynia recalls. And for the first time, her skin color became pink.
The seeds of her career, sown at age 5
Although she didn't realize it for years, that hospitalization played a significant part in her career choice. At Children's Wynia met a young child life specialist named Sheila Palm, who she called "Sheila the play lady."
Because Wynia's condition required regular check-ups and periodic procedures to monitor her heart function, she became a "frequent flyer" in the hospital and clinics. She and her family kept in touch with Palm. When Wynia began exploring careers as a young adult, she met with Palm and asked a simple question, "What does it take to become a child life specialist?"
Acting on Palm's advice, Wynia received a degree in psychology and family studies from St. Olaf College in Northfield and did her internship at Children's. Now in her 10th year as a child life specialist at Children's, she credits her experiences as a patient and her positive memories of many dedicated health professionals at Children's as inspirations for her career choice.
For most of those early years, Amy's pediatric cardiologist was Blanton Bessinger, MD. She fondly recalls his booming voice, gentle nature, and how she would sit in Bessinger's chair during her clinic visits.
"I loved him so much that when I was 5, I named my teddy bear Dr. Bessinger," Wynia recalls. Later, Bessinger attended her high school graduation and her wedding. "He got to know me and my family. Dr. Bessinger went beyond just caring for my body. He cared for me personally."
By age 15, Wynia's heart had again outgrown the previous repairs. Her surgeon at Children's placed a valve to stop the backflow of blood from her lungs.
A shift into adulthood, with continuing specialty care
By this point, pediatric cardiologist Greg Wright, MD, of Children's Heart Clinic, had become her pediatric cardiologist. Wynia still sees Wright for regular check-ups, and he followed her especially closely during her two pregnancies.
"Dr. Wright has transitioned me from my teenage years to motherhood," Wynia says. "It was reassuring to have him watch over me during my pregnancies and to let me know that my children's hearts were developing normally. He's a kind and caring man, and I'm glad to have him caring for me still to this day."
After her third surgery, Wynia again felt a surge of new energy and vitality. Even though she would always have a serious medical condition, her heart was strong enough to keep up with her peers. She participated in cheerleading and "all the normal teenage stuff," Wynia says.
Today, Amy is thriving and living life to the fullest. She has a husband, Jonathan; two children, Ben and Grace; and a fulfilling job. She leads an active life and enjoys walking, swimming, playing outside with her kids, and riding a bicycle. Although she'll need specialized care for the rest of her life, Wynia has a normal life expectancy.
"Amy's story is the product of decades of clinical collaboration and innovation," Wright says. "She's one of many adults with congenital heart disease, and that's something we simply haven't seen in previous generations."
According to the Adult Congenital Heart Association, about 1 million adults in the United States have heart defects that have been present since birth. There are now more adults than children living with heart defects.
This medical achievement creates its own set of questions: Who should care for these patients as they reach adulthood? Where should they receive care?
Training for adult cardiologists generally focuses on heart disease acquired during adulthood. They may be unfamiliar with these patients' unique anatomy and previous surgeries. Pediatric cardiologists, on the other hand, focus on patients under age 21 and practice in children's hospitals.
It may seem odd for adults to receive care in a pediatric hospital or clinic. But because of their expertise with congenital heart defects and treatments, pediatric cardiologists have much to offer this group of adults, especially if these specialists have additional training in adults with congenital heart disease.
Wynia understands the issues well. "When I sit in the reception area at Children's Heart Clinic, people probably assume that one of my children is there to see the doctor, not me," she says. "But I know I'm where I need to be. I know that Dr. Wright knows my situation and is the best one to care for me."
Coming full circle: Giving back to the next generation
As a child life specialist, Amy works in the emergency department at Woodwinds Health Campus in Woodbury, a HealthEast community hospital that collaborates with Children's to care for the pediatric population. She meets children as they enter the emergency department, developing a rapport and finding toys and activities to keep them occupied.
Wynia helps children during their entire visit, preparing them for medical procedures and, when possible, helping them make decisions to increase their coping skills. She loves it when children realize their courage in accomplishing difficult things at the hospital.
Every day, she draws on her memories of what it's like to be one of those children. "Being a child at heart and remembering what it's like to be a young patient—that makes me a better child life specialist," Wynia says. "I wear my scar like a badge of honor. It reminds me of how far I've come."
Children's Hospitals and Clinics of Minnesota