February may be Heart Month, but for Kohen’s family, every month is a reminder of just how precious his little heartbeat is.

When Kohen was born with a complex congenital heart condition, his parents were suddenly thrust into a world of hospital rooms, difficult conversations and frightening uncertainty. Instead of simply learning how to enjoy life with their newborn, they found themselves sitting beside his hospital bed, hoping and praying that their little boy would make it through.

Kohen was born with pulmonary atresia with an intact ventricular septum and right-ventricle-dependent coronary circulation, along with hypoplastic right heart syndrome, Ebstein anomaly of the tricuspid valve, and myocarditis affecting the left ventricle.

His journey involved intensive medical care and long periods of uncertainty as doctors worked to support his fragile heart. For his parents, every update could bring relief — or another reason to worry.

There were moments when they had to prepare themselves for the possibility of saying goodbye to the baby they had only just begun to know.

“No one tells you how to love a baby you’re afraid you might lose,” the family shared. “You learn to celebrate every little moment while carrying a fear that never completely goes away.”

And even after Kohen survived those darkest months, the emotions did not simply disappear.

His parents describe it as “grieving a baby that survived.”

They are endlessly grateful that their son is here, growing and experiencing the ordinary joys they once feared they might never see. Yet the memories of those uncertain days remain close to the surface.

Sometimes the fear returns while they watch him sleep. Sometimes gratitude brings unexpected tears. And sometimes they simply find themselves overwhelmed by everything their family has been through.

“We are so thankful that Kohen is here with us,” they said. “But surviving does not erase what happened. CHD changed our family forever, and a part of our hearts will always remember those moments.”

Today, Kohen is their heart warrior — a little boy whose journey has shown his family the extraordinary value of an ordinary day.

“This is CHD,” his family said. “Our children can be happy, safe and thriving, while their parents still carry the scars of everything they once went through.”