Sophie
During a routine ultrasound, we learned our daughter Sophie had a rare congenital heart defect called truncus arteriosus. At the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center at Johns Hopkins Children’s Center, we found hope alongside fear. A prenatal diagnosis allowed us to prepare for her delivery and critical surgery, giving her the best chance of survival.
Sophie was born on May 31, 2023, via cesarean-section, pink and beautiful, but gravely ill. She was rushed to the Pediatric Cardiac Intensive Care Unit (PCICU), where we knew her journey was just beginning. Miraculously, I was able to hold and nurse her that first day. We cherished every moment before her first open-heart surgery at just one week old.
Dr. Mettler and the PCICU team performed a complex procedure to reconstruct her tiny heart. When Sophie couldn’t come off bypass, she was placed on extracorporeal membrane oxygenation (ECMO) life support. A day later, she needed emergency surgery to revise the repair—her chances of survival now uncertain. She made it through, but faced seizures, blood clots and a brain bleed.
On June 19, we celebrated an unforgettable victory—Sophie came off ECMO! After 86 days in the hospital, Sophie came home in August to her four cheering siblings. She beat infection, ditched her feeding tube and continues to defy odds.
Sophie has endured more than most toddlers but has been surrounded by immense love from family and the extraordinary Hopkins team. Her heart condition is lifelong, but so is our gratitude.
Love has defined her journey. And if you meet Sophie, expect a hug—she has so much love to give!
