Owen’s Journey

written by: Samantha (mother)

At our 20-week ultrasound, we found out that something was wrong with our baby’s heart. I’ll never forget that moment. The room got quiet, the air felt heavy, and all I could think was that this wasn’t how it was supposed to go. A few hours later, we heard the words pulmonary atresia for the first time. Everything I thought I knew about what pregnancy and newborn life would look like suddenly disappeared.

The rest of my pregnancy became a blur of appointments, specialists, and a mix of hope and fear. Every ultrasound felt like holding my breath. Every little kick reminded me that he was already fighting so hard.

When it was time to deliver, we went to CHOP. The room was filled with doctors and nurses waiting for him to arrive. I barely got a glimpse of his face before they rushed him away and intubated him. I wanted so badly to hold him, to tell him that everything would be okay, but instead I watched as they worked to keep him alive.

At just three days old, he had his first procedure, a balloon valvuloplasty to open his pulmonary valve. I remember sitting there, watching the clock, and feeling completely helpless. When we finally got to see him after, I couldn’t believe how small he looked under all the wires and monitors, but he was still my strong little boy.

When he was a month and a half old, he needed another procedure. Handing him over again felt just as hard, maybe even harder, because by then we had spent so many hours holding him, learning his sounds, and falling even more in love with him. But once again, he fought through.

Those early days were full of ups and downs. We learned to celebrate the tiniest things — a steady oxygen number, a quiet night, a chance to finally hold him again.

Having a child with CHD has changed everything about how I see the world. It has taught me what real strength looks like. It has made me more patient, more grateful, and more aware of how precious every single moment really is. Our son is brave, resilient, and full of light. He’s our miracle, and we’re so proud of every single step of his journey.

We will always be thankful for CHOP and the CHD community for giving him the best possible start in life, and for reminding us every day that hope can grow even in the hardest places.