06/23/2026
❤️ Congenital Heart Disease families, and professionals, we need your help.
If you’ve ever spent your lunch break arguing with insurance, kept medication schedules in your head, repeated the same medical history to five different providers, or carried a folder full of records everywhere you go…
…this is for you.
We are collecting anonymous stories about the invisible work of caregiving and living with complex medical conditions.
Not just the appointments and surgeries, but the paperwork, prior authorizations, pharmacy calls, scheduling, reminders, and mental load that nobody sees.
💙 Mostly tap-to-answer
⏰ Takes about 3 minutes
📝 Anonymous
❤️ Every story matters
Whether you’re a heart warrior, a parent, spouse, caregiver, or someone who has spent years professionally navigating congenital heart disease, your experience matters.
Our hope is simple: listen first, learn what people actually need, and use those stories to build something that gives families back time and peace of mind.
If this sounds like your life, I’d be honored if you’d take a few minutes to participate
and share it with another CHD family who might have a story to tell.
Because the invisible work deserves to be seen. 💙❤️
Documenting the Invisible Work of Caregiving Description: Help us document the invisible work of caregiving. If you’ve ever felt like you became a scheduler, insurance expert, pharmacist, advocate, and case manager instead of simply a caregiver, maybe even a chance to just be MOM, this is for you....