"Your scars are familiar"

A writer whose late son was born with a heart defect finds strength—not pain—in meeting adults with the same diagnosis

Photo: Gabriel Hemery

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People sometimes email me to thank me for my work. They don’t often include a content warning. Please feel free to stop reading if it makes you uncomfortable, wrote

James G. Robinson

. Not only did he work for a competitor, he told me, but his interest in congenital heart disease was wrapped up in an experience I might find distressing.

Like me, his son was born with a single-ventricle heart and had the same trio of cardiac surgeries as a child. Unlike me, Nadav didn’t make it. You'd think that reading about CHD survivors would be upsetting for a parent like me, he wrote, but surprisingly that's not the case.

James works for The New York Times, lives in Brooklyn and is one of the few people I’ve encountered who has opinions about the Fontan. When he emailed me in May, he was getting ready to publish his memoir, “More Than We Expected: Five Years With a Remarkable Child,” about his journey with his son. (It came out in November.) It was clear that we’d have a lot to talk about.

Out of a coffee and more emails came this essay from James, about his experience meeting people who’d survived the things his son had not. This might be a difficult piece to read—if you need to skip it, please do—but know that it is hopeful. It offers a reminder that shared experience gives us strength and that life, however short or long, is a gift.

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I remember being amazed when I read your essay in The Wall Street Journal. Wow! I thought. There’s a community of people who survived? It had always seemed like such a longshot.

Like you, our son Nadav had three surgeries before the age of 4—a Blalock-Thomas-Taussig shunt at five days old, a Glenn at 5 months and a Fontan just before his fourth birthday in 2015. Our hope was that these surgeries might help him survive until teenage years, when he might become a candidate for a transplant. But those years were so far off and abstract. 

In the midst of all of the medical challenges our son faced, I tried my best not to linger in what might be. Not until we’d made it through.

I’d never met anyone who’d survived these three surgeries. There was some evidence that the operations worked: a bundle of holiday cards pinned to a corkboard in the pediatric cardiology unit, pictures of smiling kids, the pride of the unit. But they were all so young. Their parents were probably gritting their teeth off-camera, I imagined, hoping that their luck would hold.

Those surgeries felt like the heart-wrenching spins of a high-stakes slot machine: the game deceptively simple, the odds impossibly long. There must be someone who wins the big jackpot. But it wasn’t likely to be someone you know. 

* * *

Our luck held out, for a few years at least. Nadav’s three surgeries went well, aside from some anxious moments during the Fontan. And as he grew, his personality emerged: an old soul with a calm gaze and a wry laugh, his curly blond locks an unruly, adorable mess. He adapted to his low oxygen levels by pacing himself throughout the day, singing himself to sleep long after his two brothers started snoring. 

James G. Robinson is the author of the memoir “More Than We Expected.” Photo: Earl Wilson

But we were blindsided on a family trip to Australia, three months after the Fontan, when he was diagnosed with a sudden clot that required an emergency operation and left us stranded on the other side of the world. Any hopes of teenage transplants were put on hold. We found ourselves merely hoping he’d make it out alive. 

We spent three months in Sydney, clinging to life, before an amazing series of miracles helped us return to the U.S. By then, my focus had changed; I’d learned to accept the reality that his life might be short. All I could do was be grateful for the time we had together.

* * *

By the time I finally met a survivor, I’d come to terms with this reality. 

It was about nine months after we’d returned from Australia. Nadav—now 5 years old—was in the hospital for a cath, and while he recovered, we were invited to the lounge for a special parents’ tea. Some of the volunteers serving homemade cakes were parents whose children had once been patients in the cardiac ward. Who were these amazing creatures? I thought. Could this be my future?

One introduced me to her teenage daughter, who’d received a heart transplant a decade before, and now seemed in perfect health. We chatted for a long time about what it felt like to have been a patient; how thankful she was to survive; her hopes and dreams for the future. (I think she was planning to go to med school.) 

It was an effortless, wonderful conversation. Talking with her made it easy, even obvious, to imagine that we might have the chance to emerge unscathed, freed from the constant tragedy of a broken heart; to imagine that everything could be OK, because she was; that amongst all of the death and despair, there was at least one mother able to watch her daughter grow up.

And then, as if on cue, a nurse whispered in my ear. “Please come with me,” she said. “Your son is coding.” 

* * *

Thankfully, Nadav pulled through that day. But a few months later, he was gone, at the age of 5. And we suddenly found ourselves thrust into an entirely new community—one centered on grief, not hope. Our world no longer revolved around sats or pressures or procedures. It felt like exile.

Still, I feel no bitterness towards those parents whose cardiac kids made it through. It was not a misfortune for us to have experienced Nadav’s life, short as it was. Those five years opened my eyes to the mysterious ways in which the body forms and grows, giving life, and our extraordinary capacity to compensate and heal. We were so incredibly lucky to experience him, and all of our children—three brightly shining gifts, the greatest of blessings.

I struggled for years to explain why sharing such a short life was such a privilege. I even wrote a book about it, which was published recently. And one of its unexpected gifts has been the opportunity to reconnect with those communities we once inhabited: parents dealing with similar challenges, doctors caring for kids with complicated conditions. And a community I'd never really known—those who beat the odds and made it through to adulthood.

Even though our outcomes were different, your scars are familiar. 

* * *

It’s a bit of a risk, sharing our story with those who survived. I have no idea whether it is something the adult CHD community wants to hear or not. I worry that hearing it might bring you pain. And I hope, honestly, that it does not. 

Years from now, I suspect, dealing with heart defects may well be routine. Perhaps they will rebuild hearts from stem cells—or even just print them, mighty muscles built to order—and be done with it. No more endless surgeries, wrenching the body’s circulation into abnormal circuits, waiting for another’s tragedy to make a new heart magically appear. 

For now, I can’t help but be inspired by the stories of those who beat the odds. Even though our own journey didn’t turn out quite as we’d expected, it’s somehow reassuring to know that the path wasn’t entirely hopeless.