Jett’s journey began long before he was born. At our 20-week anatomy scan, we received news that changed everything—our son had Hypoplastic Left Heart Syndrome (HLHS), a rare and complex congenital heart defect that affects 1 in every 5,000 babies. From that moment, our path took a new direction, and we transferred our care to Maternal Fetal Medicine at Children’s Mercy Kansas City to prepare for the fight ahead.
Jett is a heart warrior in every sense. While his twin sister, Ivana, was born healthy, Jett entered the world already facing unimaginable challenges. At just 8 days old, he underwent his first open-heart surgery, the Norwood procedure, at Children’s Mercy Hospital. He spent 62 days inpatient, fighting for his life and proving his incredible strength.
At 5 months old, we made the life-changing decision to take Jett to Boston Children’s Hospital for an LV recruitment procedure—an alternative approach to the traditional palliative path for HLHS. Instead of settling for a half-working heart, we chose to fight for a fully functioning one. Against the odds, Jett’s left ventricle began to grow. After just 14 days inpatient, we came home with renewed hope and the miracle of a heart that was healing.
Now, on March 4th, we’re heading back to Boston for Jett’s third open-heart surgery: a full biventricular repair. This is the next big step in his journey—one that will give him the best chance at a heart that can function fully on its own.
Jett’s story is one of resilience, faith, and the power of never giving up. His journey is far from over, but with God’s grace and the strength he’s shown from day one, we believe his heart is just getting started.
