The stories that don't get told
I chatted with heart parents Tom and Kat Hansen about nuanced narratives, the shortcomings of CHD labels and what to know about raising kids with heart issues
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As a writer and a journalist, I know the importance of the stories we tell about each other and ourselves. Putting a name to something, spinning a swirl of thoughts into words and sentences, constructing a narrative—all these things make meaning and help us decide what the world is all about. The stories of people with congenital heart disease are multi-faceted and sui generis, but too few places tell these accounts in a complex and thoughtful way.
So I was delighted to speak with Tom and Kat Hansen for their show, The Hope and Courage Podcast for CHD Parents. The husband-and-wife team are the parents of a son with CHD, and their podcast offers the lessons they’ve learned along the way, plus interviews with CHD experts, insights and resources.
I am often wary of talking to “heart parents,” i.e. the parents of children with CHD. Sometimes they interact with me as though I’m a cipher of their own child’s future or talk to me like I’m still a little kid. But Tom and Kat were lovely and thoughtful and open, and I really enjoyed our conversation. I spoke with them about telling more nuanced stories, the sometimes inadequate labels we use to describe people with CHD, and how parents can provide space for their children to experience heart issues in their own ways.
Listen to the episode, “CHD Identity & the Importance of Sharing Unique CHD Stories” on Spotify, Apple or wherever you get your podcasts.
I’ve included a few excerpts below. I’m still recovering from a whirlwind few weeks—a bout with Covid, a family trip in North Carolina and an appearance at a journalism conference in Boulder, Colo.—so today’s edition is a short one! (And thanks so much for all your well wishes when I was sick—it really means a lot.)
On the complexity of CHD stories:
Leigh: A lot of the stories you hear, that you read in the news—when there is any mention of someone who’s born with a complex heart defect—you get these stories of triumph, which are relatively simplistic. Someone has a surgery and then everything’s great. Or there are these stories of tragedy, where you hear about the worst outcomes or the worst experiences that people have. And I think there is so much other stuff in between. There are so many nuances. There’s both ways that this has enriched my life and ways that it has made it really difficult and I want to explore all of that.
On the words we use to describe people with CHD:
Kat: As a part of this podcast, we always ask, what do you want to be referred to as? And a lot of people say, “Warrior’s fine.” “Survivor’s fine.” They’ll just kind of default to these words. But I never really thought deeply about how those words could put pressure on you or box you in or, like you said, streamline the experience a little bit too much and not be a realistic expression of what it is that you guys go through.
On advice for parents with CHD kids:
Leigh: I think it’s important to leave space for your kid to experience this however they experience it. There were things that left a huge impression on my mom that I don’t even remember. All of my [heart] surgeries happened before I was even able to build memories, let alone express in sentences what was happening to me. And those memories are so, so, so strong and powerful for her. And there are things that I experienced as a 13-year-old that are so powerful for me. Being in an echo as a 13-year-old, you’re bare from the waist up—that to me was such a powerful memory. But that’s just a routine test. It’s not painful. Part of that is understanding that your kid is going to experience this in ways that might be very different from how you think it should be experienced or how you’re experiencing it. And then as your kid gets older, that will change and evolve.
These quotes have been lightly edited for clarity.
Related links
Don’t call me a warrior. Terms like “heart warrior,” “heart hero” and “survivor” always make me cringe. Why is that?
How to raise a kid with a heart condition. What did your parents do right? What might they have done differently? Thinking back on it now, I wish I’d been able to talk more openly about my experiences.
Podcasts by and for people born with wonky hearts. A whole bunch of podcasts aimed at the CHD community have cropped up in the past few years. Here are a few of the shows helmed by people with heart conditions.
What do you think about our conversation? Share your thoughts!