When Sydney’s mother was just 16 weeks pregnant, doctors discovered her baby’s heart was beating much too slowly. That finding led them to the University of Virginia, where Sydney was diagnosed prenatally with congenital complete heart block caused by an autoimmune condition her mother didn’t even know she had.

Sydney arrived 17 days early, and immediately after birth, doctors found her heart was enlarged, and she was having seizures, thrombocytopenia, and a pleural effusion. At just 15 hours old, a temporary pacemaker was threaded through a vein in her groin to her heart. Four days later, she received her first permanent pacemaker implanted in her tiny abdomen. She improved tremendously and went home on her original due date.

Since then, Sydney has undergone three more pacemaker surgeries and manages additional diagnoses, including postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), chronic deep vein thrombosis (DVT), Chiari I, chronic pain, and mental health challenges. She also faces barriers to care many providers don’t recognize congenital heart block as a congenital heart defect, preventing her from accessing adult congenital heart disease (ACHD) clinics. After more than 30 years of being pacemaker-dependent, Sydney now faces pacing-related complications and worries her heart isn’t being monitored as closely as it should be.

Despite these challenges, Sydney’s spirit and purpose shine. She earned her Bachelor of Science in Nursing from Shepherd University and now serves as a public health nurse while completing a residency through the University of Wisconsin–Madison. In 2023, she returned to Camp Odayin the heart camp she attended as a teen to serve as a cabin nurse for other heart kids.

Sydney uses her journey and her voice to advocate for others with electrical and conduction heart defects, determined to expand access to appropriate ACHD care. “I’m thrilled to work alongside OHHF,” she says. “I feel optimistic about what we can accomplish together.”