Lena Mörsch has adult congenital heart disease, and she’s on a mission—several of them, actually. Mörsch has dedicated a good deal of her time to helping others with her disease find support and camaraderie. And she works to educate people about adult congenital heart disease and to help secure funding for related research.
“She’s a superadvocate,” says Joseph Billadello, MD, director of the Washington University Adult Congenital Heart Disease Center, a collaboration between St. Louis Children’s Hospital, Barnes-Jewish Hospital and Washington University Physicians. He’s right, but her life took several twists and turns to make her into the person she is today.
Congenital heart disease is an umbrella term for a range of defects in the heart’s structure that are present at birth. Sometimes these defects are diagnosed during pregnancy or shortly after birth. Other times they’re not detected until years later.
Mörsch, now 45, was diagnosed with congenital heart disease when she was 4 months old. While her twin sister was thriving, Mörsch struggled, affected by constant congestion and coughing and difficulties eating. She wasn’t growing the way her sister was, and her mom took her to the doctor several times, concerned that something might be wrong, though nothing more serious than a cold was diagnosed. Finally, a physician at the small-town hospital recognized that something was wrong with Mörsch’s heart.
By that time, Mörsch was in critical need of care, and her parents rushed her to a larger hospital and then to St. Louis Children’s Hospital, where they were told she might not survive. But she did, and four months later she was well enough to go home.
But Mörsch’s childhood was rough. She was weak and frequently sick, often with pneumonia, and poor blood circulation caused her fingers and lips to turn purple and blue. She was different, and some kids were mean to her.
“Being bullied and ostracized was so painful,” she says.
When she was 14, Mörsch underwent open-heart surgery to repair her right ventricular outflow tract, which carries oxygenated blood out of the heart so that it can flow into the body. Once she recovered, she felt good for the first time in her life, and her skin lost its blue color. She wanted to forget about her disease and move on with her life.
“All of a sudden, I looked normal, and I felt normal,” Mörsch says. “I went into this rebellion and started blowing off my doctor’s appointments.”
In 2010, however, she did keep an appointment with Philip Ludbrook, MD, a cardiologist at Barnes-Jewish Hospital, and learned that she needed several heart repairs. The news was a wake-up call.
“For adult congenital heart patients, there is no such thing as ‘cured,’ Mörsch says. “That’s why we have to follow up with our cardiologists for our entire lives.”
After her second open-heart surgery, Mörsch says, she reached a turning point. “I decided then that instead of being ashamed I would wear my scar with pride, and I would get out there and make a difference.”
That’s exactly what she’s done.
As a senior ambassador for the Adult Congenital Heart Association (ACHA), Mörsch oversees about 20 other ambassadors in the Midwest. In this role, she organizes an annual Congenital Heart Day in St. Louis at Busch Stadium to help raise awareness. She’s also visited Capitol Hill five times to tell her story in support of the Congenital Heart Futures Act, which authorizes research and data collection specific to congenital heart disease. She’s currently working on a website that will provide news and information about the disease. And she started Zipper Sisters, a Facebook support group for women with congenital heart disease.
“Lena is motivated, articulate and smart, and has been through the ropes herself,” Ludbrook says. “She has a great deal of savvy and spirit, and she is the ideal spokesperson for people with adult congenital heart disease.”
Mörsch says one of her priorities is to help people understand the difference between coronary heart disease and congenital heart disease. Coronary heart disease, the leading cause of death in adults in the United States, occurs when cholesterol and other material builds up inside the arteries that carry blood to the heart. It is most common in middle-aged and older adults, and diet and exercise are keys to preventing and controlling it.
Congenital heart disease, present from before birth, may require several lifesaving surgeries during one patient’s lifetime. Though many adults with congenital heart disease lead a relatively normal life, some have physical limitations and a variety of symptoms.
In addition, because congenital heart disease is a lifelong condition, one of the challenges for those who have the disease is the transition from pediatric care to adult care. Because Mörsch understands that difficulty, she is working hard to make the transition a little easier for children treated for congenital heart disease at St. Louis Children’s Hospital.
With support from the ACHA, Mörsch is part of a team that is organizing a conference for teenage and adult congenital heart disease patients. The primary goal is to teach them about the Adult Congenital Heart Disease Center at Washington University and Barnes-Jewish Hospital and prepare those still receiving pediatric services for a transition of care once they are adults.
“Currently, children with congenital heart disease are often treated at a pediatric hospital until they are 20 to 22, and then they’re told, ‘OK, it’s time to move to an adult cardiologist,’ says Amy Mueller, RN, ANP-BC, a nurse practitioner at St. Louis Children’s Hospital who works with adolescent and adult patients. “That’s difficult for these kids who have grown up with their cardiologists and are very comfortable with the nurses and staff they’ve seen for years. And often the parents feel like their pediatric cardiologists have kept their kids alive. Understandably, the whole family often becomes very attached to their physicians and health care team.”
The conference, set for Dec. 2, will feature panel discussions; talks given by Mörsch, Mueller and others; and opportunities for teens to talk with members of the adult congenital heart team at Barnes-Jewish Hospital and St. Louis Children’s Hospital.
Billadello describes the open collaboration between pediatric cardiologists at St. Louis Children’s Hospital and their counterparts at the Adult Congenital Heart Disease Center as unique and emphasizes that adults with complex conditions can receive all the care they need at one location.
Mörsch agrees, and she intends to keep spreading the word.
“I love my advocacy work, and I love being around people with congenital heart disease,” she says. “They are the most amazing, extraordinary people in the world, and because of them, this work is extremely rewarding.”