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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?
I have really strong boundaries around sharing my child’s health stuff with people - social media or otherwise! We frame it like this: it’s HIS story to tell, and we don’t want him to resent the way we handled it before he was old enough to have a say.
The information is on a need to know basis. Teachers and school professionals? Need to know. Close family and friends? Need to know - our biggest support system! Every last extended family member? Nope! Casual acquaintances? Nope! Folks on social media? NOOO!
Have I posted in the occasional forum? When someone is seeking specific help who is in a similar boat? Sure! Have I asked others for personal info in those same forums? Sure. Do I prefer to move it to a private message when possible? Absolutely.
Now our child js in elementary school and knows enough about their diagnoses to be able to communicate for themselves sometimes which is great. More people know now, because our kid is old enough to tell whoever he wants.
Were the early years lonely? Yes. Even with a support system in place. I empathize with this take on parents sharing simply out of desperation — you feel somehow in control (of the posts, the info) so you maintain this record because you’re clinging to this community of people who have a parasocial relationship with you online. But that’s not community (in my viewpoint). It rings hollow. It exacerbates the loneliness, in a way.
It’s so complicated, and there are so many ways to do it. Kids growing up in public, so online, for all to see! It’s wild. So much to think about here. Thank you!
I’ve struggled with the whole issue of posting my son’s CHD journey online. By preference I’m not somebody who likes posting online even when it’s about myself, and generally avoid doing so on any medium. Especially when it came to setting up a GoFundMe for my son’s medical bills resulting from his CHD, I was adamantly opposed to doing so for exactly the reasons you listed. My son can’t advocate for himself yet, and I felt it was an invasion of his privacy to post about his personal health status to ask for help from others. If I’m being honest I’m still not completely comfortable with it, and I struggle with the thought of him one day telling me that he wished we hadn’t posted about his defect and that it makes him uncomfortable that so many people know about it. But given how things have played out for us, we had a lot of medical bills already from doing IVF (which at the time was not covered by our insurance,) and adding this on top of it left us feeling like we were short on options. It has provided us with much more comfort and solidarity, especially hearing from other heart parents who’ve reached out to us after reading about his story on our page, but long term I worry about the effect this will have on him, and I only hope that as his father I work hard now to find an answer to these questions so that I’m prepared for what issues they might bring about in the future.