For many parents, the arrival of a newborn is filled with joy, sleepless nights, and endless advice about how to care for a baby. But for some families, the journey into parenthood looks very different — shaped by hospital rooms, uncertainty, and a kind of love tested in unimaginable ways.

Kohen is one of those remarkable little fighters.

Born with several complex congenital heart conditions, including pulmonary atresia with an intact ventricular septum, hypoplastic right heart syndrome, Ebstein anomaly of the tricuspid valve, and myocarditis affecting the left ventricle, Kohen faced serious medical challenges from the very beginning of life.

For families affected by congenital heart disease (CHD), the experience can be overwhelming. Parents often live with a constant mixture of hope, fear, and determination as they watch their child fight through treatments and long hospital stays.

Kohen’s mother describes those early months as a time filled with emotional weight. While many new parents are told to “sleep when the baby sleeps” or to enjoy every moment because childhood passes quickly, she says no one prepares you for loving a child through such uncertain circumstances.

Much of their time was spent beside Kohen’s hospital bed, holding on to hope while doctors carefully monitored his fragile condition. Each conversation with medical staff carried both possibilities — the hope of recovery and the fear of loss.

For parents in similar situations, the experience can feel isolating. Even when a child grows stronger and begins to thrive, the emotional memories of those early struggles remain.

Kohen’s journey is one of resilience. Today, he continues to grow and bring joy to the people around him. Yet his family says the experience has forever changed their perspective on life.

There is deep gratitude for every milestone, every peaceful moment, and every smile. But there is also a quiet understanding of the challenges that families facing congenital heart disease often carry long after the hospital days are over.