Parents who post
What happens when children’s heart stories become content?
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Every once in a while, when I lose myself down a TikTok hole or read a particularly vile string of Instagram comments, I thank whatever power is out in the universe that the so-called social web didn’t exist when I was young. My teenage missteps are safely contained in diary entries and old Polaroids. Mark Zuckerberg and his algorithm have disseminated exactly zero of my infant milestones. Neither my parents nor I turned my childhood into content.
This also means that, for better or worse, none of my childhood experiences with a heart condition were chronicled online. That feels so different from how it works for kids today.
It’s a thought I’ve been mulling since Carolyn, who shares updates about her son’s CHD via the Substack
, posted this comment on one of my essays in December:“The reason people read Henry's Heart is because they care about my family. This is a great reason, as we are in the thick of the early days of the single ventricle path at only 3.5 months old. I'm not trying to go viral at all; in fact, I worry about what my son will think of all of this when he's older. I hope I'm respecting his privacy and dignity. (I would so love your perspective on the phenomenon of families sharing their babies' health journeys publicly.)”
Parents are, indeed, sharing their babies’ health journeys publicly—from Instagram to GoFundMe, Facebook, Reddit, podcasts, newsletters and beyond. Pictures abound showing children fresh out of heart surgery, angry red scars on their chests, or decked out in “Little Heart Warrior” t-shirts; details of their defects, procedures and progress are commonly included.
As the first generation of children born in a post-social-media world is now reaching adulthood, questions of privacy, protection and consent are ever more urgent. Some children of influencers—now fully grown—are beginning to understand the harm of their early years being documented on the internet in excruciating detail, Teen Vogue reported recently. How we present our children online before they understand the stakes is an important matter of debate.
With CHD stories—and health stories more broadly—everything feels a lot more complicated. Health information, in another context, would be legally protected as confidential. Yet parents might feel, understandably, that this is their experience to share—they are living through it alongside their kids, who might be too young to grasp what’s going on, let alone articulate it for the internet.
Sharing these experiences often helps people feel less alone, and can spread needed knowledge. I think of Tom and Kat Hansen, for example, describing their son’s experience with CHD on “The Hope and Courage Podcast for CHD Parents” to guide others in the same boat. I have a lot of compassion for parents watching their kids go through potentially life-threatening procedures, sometimes for years on end. Who wouldn’t reach out to the vast universe of the internet to find camaraderie, condolences, information and a reminder that others are going through the same thing? In the U.S., which lacks public healthcare, sharing children’s stories online, especially on a GoFundMe profile, can help pay medical bills.
Sometimes, as Carolyn told me in a follow-up email, parents share their stories “out of sheer desperation.” She added:
“The system surrounding severely sick children is simply not good enough. The experience is isolating, depressing, traumatic, and totally life changing for not just babies but their entire families. I want people to know about it so that we can work together to improve it. …
I used to be judgmental toward the more viral [heart mom Instagram] accounts; it seemed unfair to the child—even exploitative—getting famous for being sick. But now all I see is desperation, an outlet for families who can’t think of anything to do other than scream their story from the rooftops. And if they make a supplemental income somehow from it, well, they probably had to leave their job to care for their child anyway so this is more helpful/necessary than exploitative. All of that said, I still worry about the child’s privacy and rights.”
I do, too. I find it hard to look at photos of children in the hospital, tubes tentacle-ing out from their small bodies. I think of how vulnerable they are, how they can’t cover themselves, how they can’t say no, how these moments of injury are captured in electronic amber. I feel a deep relief that I was never one of those babies, available for consumption online. What I’ve shared here in this newsletter or elsewhere on the internet is my narrative, the things I feel comfortable disclosing.
Of course, everyone has a different tolerance for sharing online. Mine is generally pretty low; on social media, I’m more of a lurker. The unforeseen side of this is that what I experienced as a little kid is something of a black hole. My “heart journey” exists mostly in the fog of my parents’ memories, now decades removed, or the medicalese of my health records or the wordless recollections of my body. Without the habit of sharing, there was little reason to document.
When I asked my mother last year whether she had any photos of me in the hospital for my surgeries, she sounded taken aback. “You have to understand, for us, this was the scariest time in our lives,” she told me. “So no, there are no photographs.”
I want to know what you think. Leave a comment or send me a note at theheartdialogues@substack.com.
What did your parents share about your heart stuff online, what did they keep private, and what did you think of that approach?
For the parents out there, how are you grappling with this question, especially as your kids grow up?
Are there ways to share in a more responsible way?
This is so big and so hard.
When my son was alive, I didn’t share as much publicly. I was pretty strict about not sharing his image on social media at all. I started writing on Substack and mostly wrote about my life, but I did start sharing his health info in bits and pieces because my audience was almost exclusively friends and family at that time. Hard to say how that would have evolved, I think I likely wouldn’t have felt comfortable sharing pictures of Han as he went through surgery but I imagine I would have written about it from my perspective.
For any future children, I will probably rediscover my interest in their privacy.
My son was born in 1984, long before the advent of social media. I did post a photo of him leaving the hospital in 2021 after a grueling five weeks recovery from botched pacemaker replacement surgery. So...part of his story belongs to me and to his dad and his sister and all those who love us. I don't think I would do a blow by blow account, but yes, his operations and hospitalizations were indeed the scariest moments of our lives and, no, there wasn't a tremendous amount of support. Indeed, there still isn't! The truth is, no one understands these journeys unless one has gone on one. So social media allows young (and old) parents to interact with people who are can understand. I do know that my son would never post anything about his experience on social media, or on this forum either. I wonder how many adults with chd would...that is why I find this blog so compelling!! Thank you for your thoughtful comments, Leigh, as always!