Between the Beats
BTB translates complex-congenital heart disease conditions and research into clear, practical explanations for the families living it. No med jargon, no false reassurances - just the evidence, what it may mean, and better questions to bring into the room.
| Platform |  | Pricing | Freemium | Publishes | Twice weekly |
|---|---|---|---|---|---|
| Issues | 49 | Founded | 6 months ago | Last Issue | 6 days ago |
| Active | |||||
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betweenthebeats.substack.comLatest Issues
The CHD Research Gap: Parent Priorities vs. Reality
I had been chasing a (metaphorical) rabbit about research themes in the CHD medical world and I was looking over a data table I just put together when a thought popped into my head:
How much of the medical research actually addresses what...
The Missing Ruler: A Free Tool to Grade the Quality of CHD Information
I was fresh off my Gimme the Numbers article and was reading some of the posts from readers in the comments thread when something caught my eye - someone made a joke at all the bad advice she’d gotten over the years, and others ei...
🔬 Your Child's Heart Surgery, Decoded.
TL;DR
There’s a specific kind of quiet that moves into your body after someone in a white coat says the words “open-heart surgery” out loud about your child. To me it felt like a void that opened up in the pit of my stomach, like I’d been...
The Pulse Weekly Roundup: July 27-31, 2026
Last week's Pulse covered 10 stories across 3 continents and every stage of a CHD life: from a predictive screening model for high-altitude newborns in China, to Fontan failure biomarkers, to a Brown University study that maps exactly where...
"Give Me the Numbers.” What 1,297 CHD Parents Unilaterally Declared About the Information They Actually Need
Parents Chose the Numbers, Not the Stars.
I know you know this one.
You’re sitting across from your child’s cardiologist, and you ask a question. Not the big existential one (you learned early that “will my child be ok?” doesn’t have a cl...
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Authors
The writers behind this newsletter.
Fontan mom. Research translator for fellow CHD families. One article at a time, and altogether now.
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