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 | Daily |
|---|---|---|---|---|---|
| Issues | 46 | Founded | 6 months ago | Last Issue | 9 days ago |
| Active | |||||
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betweenthebeats.substack.comLatest Issues
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...
Tetralogy Of Fallot Repair Isn't the Finish Line: What Families Need to Know About the Long Term
There’s a moment that (much like a Fontan parent like me) almost every Tetralogy Of Fallot (TOF) parent can describe, even years later. It might happen in a hallway, or a clinic room with too-bright lighting and a cartoon mural that your ch...
The Pulse Weekly Roundup: July 13-17, 2026
1. Building Local Capacity Seen as Key to Sustainable Cardiac Care
Date: July 13, 2026 Tags: 🏥 Clinical / 🌍 Global Source: Capital Ethiopia
“We do missions to stop missions.” Five words that say everything.
Capital Ethiopia reports...
The Pulse Weekly Roundup -- July 6-10, 2026
1. Hawaii’s Only Full-Time Pediatric Heart Surgeon Says Early Diagnosis Helps Keep Kids Close to Home
Date: July 8, 2026 Tags: 🏥 Clinical / 💛 Community Source: Hawaii News Now
Cardiac care is about more than the surgery. It’s about...
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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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