What one life reveals about the changing possibilities for children born with complex heart disease
I was born in 1973 with a complex congenital heart defect that left me with a single functioning ventricle.
The year matters.
Modern treatment for single-ventricle heart disease was only beginning. The Fontan operation, which would eventually change the outlook for thousands of children born with one functioning ventricle, had only recently been introduced.
There wasn’t much of a roadmap for growing old with a heart like mine.
Medicine spent much of my lifetime creating one.
Surgery improved. Imaging improved. Intensive care improved. Procedures once considered experimental became established treatment. Children who might not have reached adulthood began going to college, building careers and having families.
The progress has been remarkable, but single-ventricle congenital heart disease remains serious.
One study of adults with single-ventricle hearts who had not undergone Fontan palliation—a group more similar to my own surgical history—estimated survival at 73 percent by age 40 and 53 percent by age 50. Even those numbers reflect people who had already survived childhood.
I was fortunate to reach 36 with the heart I was born with.
Then, on September 9, 2009, I received a donor heart.
Transplantation in adults born with single-ventricle anatomy presents its own challenges. Previous surgeries and unusual anatomy can make an already complicated operation even more difficult. In a large U.S. study, about 80 percent of adult single-ventricle heart-transplant recipients survived the first year and 54 percent were alive at ten years.
I’m now 53 and seventeen years post-transplant.
There isn’t enough data on people with my particular medical history to say precisely how unusual that is. I simply know I’ve been very fortunate.
Statistics can show us how far medicine has come. They can’t describe a life.
For me, those additional years meant my daughter Eliza was born. I later married Tina, gained another family in Slovenia and saw parts of the world I never expected to see. I’ve skied mountains, fly-fished rivers and become an advanced scuba diver.
None of that makes my story more important than anyone else’s. If anything, it makes me more aware of the children and adults represented by these numbers whose outcomes were different from mine.
On Friday, two days after my transplant anniversary, Winterfield releases a song I wrote called Dear God.
It isn’t about congenital heart disease. It’s a simple prayer about listening, stillness and gratitude. But one line feels different to me this week:
“Dear God, speak to me
when my heart is still.”
Throughout my life, faith in Jesus has given me a belief that anything is possible. I believe in the God who became man—who suffered, bled, wept, died, and rose from the grave.
That doesn’t mean I don’t wrestle with mortality. I probably think about it more than most. In some ways, I’ve spent my whole life knocking on heaven’s door.
There is an irony I’ve mentioned again and again over the years.
We live in an age when a gifted surgeon can open a human chest, remove a dying heart, place another person’s healthy heart inside it, and give someone like me seventeen more years of life.
I’ve experienced my own small, very human version of being brought back from the edge of death.
So perhaps it isn’t surprising that I don’t find the resurrection of Christ impossible to believe.
Medicine and faith are not the same thing. My transplant was made possible by extraordinary human beings applying generations of science, research, skill and sacrifice. The resurrection is a claim about God and, ultimately, a matter of faith.
But after 53 years of watching the boundaries of what we once thought possible continue to move, I’ve become careful about declaring what cannot be.
I’m grateful for the researchers, physicians, surgeons and nurses who kept pushing those boundaries.
I’m grateful for a donor and a family I can never adequately thank.
And I’m grateful for faith—for teaching me that what appears impossible today may not be impossible at all.
I’m still knocking on heaven’s door.
Just not in any hurry for someone to answer.