If you watched 18-year-old Morgan play ice hockey, you’d never know she has a congenital heart defect. Diagnosed prenatally, Morgan’s had three open-heart surgeries and multiple procedures at Children’s Hospital of Philadelphia (CHOP) to treat hypoplastic left heart syndrome (HLHS). A recent graduate of the University of Delaware, Morgan now attributes her success – both on and off the ice – to an internal drive, which Morgan’s mom, Andrea, believes all cardiac kids have. “Morgan always called the shots on what she was able to handle, accomplish and conquer,” says Andrea.

Though Morgan, now 22, doesn’t remember much of her early medical journey, Andrea remembers it all too well. Morgan was diagnosed prenatally with HLHS and referred to Jack Rychik, MD, the Director of the Fetal Heart Program and the Fontan Rehabilitation, Wellness, Activity and Resilience Development (FORWARD) Program at CHOP.

With preparations made before Morgan’s birth, she was immediately transferred upon delivery to CHOP, where she underwent her first open heart surgery at 2 days old, her second at 3 months old and her third three years later.

While children like Morgan with severe CHD may also face neurodevelopmental issues, such as problems with behavior, social skills, feeding, motor skills, academics and language development, Morgan fortunately didn’t face these challenges.

“We had a lot of developmental screenings done throughout the years,” says Andrea. Although Morgan needed physical therapy and feeding support in her early years, “the warnings we had been given [about potential developmental issues] never applied to her. In fact, it was the polar opposite.”

Morgan was a strong student; she read at higher grade levels and consistently scored at the top of her class. Similarly, she excelled in athletics, especially ice hockey, a life-long passion she discovered at 7-years-old. “Dr. Rychik always encouraged us not to restrict her activity,” says Andrea. “We followed suit.”

Adds Morgan, “My heart condition doesn’t define me in any way. I never let it limit me. When I’m doing something or involved in something, it’s going to get my 100 percent effort.”

The best for single ventricle care

When Morgan was a pre-teen, Dr. Rychik told the family about the FORWARD Program, a (then) new program, that provides teens like Morgan with single ventricle defects specialized care and expert evaluation, including examination and monitoring of non-cardiac organs, such as the liver, lungs and bones; ongoing monitoring of growth and development; and preventative management of any complications that arise. The program also promotes ongoing wellness through personalized exercise, nutrition, social work and mental health consultations. 

Because Fontan circulation can have long-term impacts on many of the body’s organ systems, the best single ventricle heart care program takes a team approach. Through the FORWARD program, Morgan is followed by specialists in Hepatology, Pulmonology and Neurology, in addition to Cardiology. Once a year, she undergoes a liver MRI, an echocardiogram, blood work and a stress test, among other tests to ensure her body systems are working properly. 

“Her health has thrived all these years,” says Andrea. In particular, she attributes Morgan’s heart health to her physical conditioning as a result of hockey. “She exercised and played the sport at least 3-4 times each week.”

Morgan’s commitment to ice hockey continued through college, where she played four seasons at the University of Delaware. Her team made it to nationals every season, with the exception of her freshman year, when public health guidelines related to the COVID-19 pandemic limited college sports to prioritize the safety of athletes and the wider community. Morgan also served as the president and captain of the team her senior year.

“A lot of my success has a lot to do with my family and friends,” Morgan says. “They have always been there for me.”

Transitioning to adult CHD care

When Morgan turned 18, her CHOP care team began to discuss her eventual transition to adult cardiac care. “They haven’t rushed us through the process; they kept in mind what was best for Morgan,” says Andrea.

This meant waiting until Morgan had graduated college and knew where she would be living. Now a local civil engineer with a job in transportation engineering and urban planning, Morgan plans to remain in Pennsylvania. Through the Philadelphia Adult Congenital Heart Center, a partnership between the Cardiac Center and Penn’s Heart and Vascular Center, Morgan’s care team is now transitioning her to adult cardiac care.

“They have been phenomenal with giving us a proper recommendation at Penn and initiating the whole process for us,” says Andrea.

Adds Morgan, “I really trust Dr. Rychik’s and the FORWARD team’s recommendation. I’m looking forward to that transition.”

Though Morgan no longer plays hockey for a team, she continues to pursue her love of the sport – and her physical activity level – as a coach of a U19 travel team. 

“[Hockey] was such a rewarding experience,” she says. “I’m so glad my doctors didn’t restrict me, and my parents supported me. They gave me the thing I love most.”