Julie's Story: Living with Complex Congenital Heart Disease – Held Together by Hope

My journey with complex congenital heart disease (CHD) began at birth. 1 in 100 babies are born with CHD. My first heart surgery was at two days old and then again at nineteen months old. I was the fifth baby at that time to receive the interventional heart surgery that ultimately saved my life. Growing up, though I had numerous surgeries, I lived a relatively normal childhood.

I was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect where part of the heart is missing or doesn't develop properly. Children with HLHS require multiple staged surgeries to survive, and I was no exception. My surgeons were incredible—each procedure brought me one step closer to a life I could call my own.

Living with CHD means living with constant vigilance. Regular cardiology appointments, echocardiograms, and MRIs have been a constant part of my life since those first days in the NICU. But I never let my diagnosis define me.

Today, I'm grateful for every breath, every heartbeat, and every moment. The medical team that has cared for me over the years has been nothing short of extraordinary. They've given me the gift of time—and with that gift comes a deep desire to give back to others facing similar journeys.