Welcome! The Heart Dialogues is a free, biweekly newsletter for people born with heart conditions (and the people who care about them).
Join this community for in-depth interviews, plus occasional essays, resources, reader threads and other good stuff, all focused on what it’s really like to live with congenital heart disease.
Who’s Behind This?
I’m Leigh Kamping-Carder, a longtime journalist, currently heading up the newsletters team at one of the top newspapers in the U.S. For the past 15 years, I’ve variously been a reporter, editor and digital strategist, covering everything from luxury homes to innovation to arts and culture. I’ve written for The Wall Street Journal, The Walrus, The New York Observer, The Forward, The Brooklyn Rail, Guernica and others. I’m based in New York, but I grew up in Toronto. 🇨🇦
I was born with tricuspid atresia, a type of single-ventricle heart defect. I had several heart surgeries as a kid in the ’80s, including a Fontan operation when I was almost 4 years old. Other than the zipper scar down my chest, you’d likely never know I have a lifelong illness. But I think about my heart every single day.
Read my essay for The Wall Street Journal: “My Heart Defect Was Repaired by Age 4. But Was I Cured?”
Listen to me on
’s “Burnt Toast” podcast, where we explored body image, scars, navigating medical settings and the pressure to be as healthy as possible.I also appeared on “The Hope and Courage Podcast for CHD Parents” with Tom and Kat Hansen. We talked about the sometimes inadequate labels we use to describe people with CHD and how parents can provide space for their children with heart issues.
I spoke with Boots Knighton about coming to terms with a lifelong heart condition for “The Heart Chamber” podcast.
In an interview on the “Heart to Heart With Anna” podcast with Anna Jaworski, I spoke about why I started this newsletter.
What Are Subscribers Saying?
“Leigh has a gift not only as a writer, but she's also a great listener. She has searched for stories that not only help educate the readers, but make those who have CHD feel understood. The Heart Dialogues is becoming a rich collection of those who overcome, inspire and choose to help others. It is a wonderful resource.” —Lena Morsch, co-founder of Zipper Sisters, a Facebook group for women with congenital heart disease
“The ACHA team and I enjoy reading each issue of The Heart Dialogues newsletter and, in some cases, even seeing our volunteers and supporters profiled. Leigh asks helpful, honest and probing questions of the people she features in her interviews, making it easy for our patient population to identify with the stories being told." —Mark Roeder, president and CEO of the Adult Congenital Heart Association
“Reading this, I have never felt so seen. Thank you so much for this post.”
"Where do I start? I'm so very impressed and appreciative of what you're doing with The Heart Dialogues! It's so far above and beyond any other resource for heart families in terms of breadth, depth, wit—and humanness. Thank you for this incredible contribution, I can't tell you how many features you've done that feel like necessary reading for me and my husband." —
, heart mom and writer of Lizzie's Letter
“Reading each edition of your newsletter has been eye-opening for me. I've never known anyone else with a childhood heart defect, so your articles and interviews have made me feel less alone.” —
, an adult with CHD and writer of TeenDramaWhore
“I subscribe to exactly 4 newsletters. One’s about cooking, one is about parenting, and one is about tech and publishing. Yours is the only one I consistently open and read. It reminds me of my favorite magazine and newspaper columns; you’ve got a clear and compassionate voice, and compelling stories to tell.” —Karen Shimizu, subscriber
Why Does This Exist?
Heart defects are the most common birth defect in the U.S., affecting 1 in 100 babies. Medical advances have allowed more people to survive into adulthood and, today, more adults than children live with congenital heart disease—a combined 2.5 million-plus in the U.S. alone.
At the same time, researchers are only beginning to understand the complications of growing older with a heart defect. Lifelong medical care is necessary but often difficult to access. And many people with CHD have grown up without ever meeting anyone like them.
While a few groups are doing critical work to raise awareness, conduct research and increase access to care, not many places exist for people with CHD to share their experiences, ask questions and feel… less weird? The Heart Dialogues is one of those places.
Get in Touch.
Questions? Feedback? Want to be featured in The Heart Dialogues? Drop me a note at theheartdialogues@substack.com, or reply to any newsletter you receive.
