Ollie was born on October 6, 2021, after a seemingly normal and healthy pregnancy. But within minutes of his arrival, it was clear something was terribly wrong. Instead of hearing the reassuring sounds of newborn cries, we watched as a team rushed him from the delivery room straight to the Cardiac Intensive Care Unit at St. Louis Children’s Hospital.

It was there we learned the words that would change everything: a rare and critical heart defect called total anomalous pulmonary venous return (TAPVR). Along with this unexpected and urgent diagnosis, we were also told our beautiful boy had Down syndrome (trisomy 21).

At just 12 hours old, Ollie was placed on ECMO, the highest form of life support. At 36 hours old, he underwent his first open-heart surgery. We were told his chances of survival were very slim. After surgery, doctors were unable to close his chest, and for seven days our newborn son lay sedated with his chest open as his tiny body fought to heal.

Ollie spent the first five weeks of his life in The Heart Center at St. Louis Children’s Hospital. And while he survived that first terrifying chapter, his journey didn’t end there. As he grew, he developed pulmonary vein stenosis a condition in which the veins that carry oxygen-rich blood from the lungs back to the heart become narrowed.

Over the past four years, Ollie has endured:

• Five cardiac catheterizations to place stents and balloon narrowed veins
• Multiple admissions to The Heart Center for viral illnesses
• More tests, lab draws, echocardiograms, and clinic visits than we could ever begin to count

And still… through all of it, Ollie is pure joy.

He adores watching his big brothers play hockey and baseball. He lights up when he dances with his big sister. His smile fills every room, and his brave heart inspires everyone who knows him.

Next week, Ollie turns four years old a birthday we weren’t sure we would ever get to celebrate. Every single year with him is a gift. Every milestone is a miracle. Every moment is a reminder of his strength and the love that surrounds him.

We could not be more grateful for our boy and for the extraordinary care that has carried him through each step of this journey.

Ollie is here. Ollie is thriving. And every day with him is a blessing.