Echoes from an emergency

Writer Lizzie Simon's letter from the PICU

Photo by Mpho Mojapelo on Unsplash

Welcome! This is The Heart Dialogues, a free newsletter for people born with heart conditions (and the people who care about them). Every other week, I’ll send you candid conversations, essays, guest posts and/or interesting links about what it’s really like to live with a weird and special heart. Join this community and support my work. Sign up for free.

I’ve been talking with my mom lately about my heart surgeries in the first few years of my life. Even decades on, her memories are clear—the imperious tone of the cardiologist who told her I had a heart defect, the wood-trimmed walls of the hospital’s waiting room, the view of a statue outside the windows of the pediatric intensive care unit. It’s strange how these details are specific and universal at the same time. 

Earlier this month, a writer I know named

Lizzie Simon

published a gripping and beautiful essay in her Substack, Lizzie's Letter, about her daughter, then 7 months old, going into cardiogenic shock. As Lizzie writes, her daughter was born with a heart condition called Long QT 15, making her one of only 65 cases documented worldwide. 

“Here’s a moment I’ll never forget: lugging my daughter in her car seat into the entrance of the ER that morning and placing her on the intake desk. It makes the kind of heavy thunk that every parent probably remembers, the weight of their baby in a car seat, being thunked to the top of a table. The nurse took one look at her and grabbed her with the force of ten million nurses, and every alarm rang, doors flung open, and doctors and nurses crawled in from every corner, like an infestation of ants, to one hospital bed, the one my daughter was in.” 

The pair eventually move to the PICU on the ninth floor.

“What I didn’t understand until I got to the 9th floor is that we were prepared for one emergency, the one they could easily foresee. It honestly never occurred to me that there could be other emergencies, too. Why didn’t anyone tell me that a virus could bring her to the brink of death? I asked this and I wasn’t given a satisfactory response. But I was becoming aware of the answer and it was like being flung into a pile of rocks: she was a ‘medically fragile’ kid so, yeah, there were other emergencies, too many to convey, and comprehensive preparedness was impossible.” 

Although I’ve never been close to a medical emergency at this level, the piece made me think of what my mom went through; her memories echoed some of the moments in the piece. Lizzie, whose daughter is now 6 years old, kindly let me publish these excerpts. If you want to read the whole of “If You Should Find Yourself Here,” head on over to Lizzie’s Letter. And subscribe for “an entertaining mix of honest reflections on culture, memoir writing and being a heart mom.”

If You Should Find Yourself Here

I’m taking a little more time to work on the next edition of The Heart Dialogues—a Q&A on health-related anxiety—so I’ll keep this edition short. Happy Memorial Day! And thank you for reading!