The Missing Ruler: A Free Tool to Grade the Quality of CHD Information
An instrument for grading health information on congenital heart disease has existed since 1998. Somehow it never made it to us, the people who benefit from it most.
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.
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🔬 Your Child's Heart Surgery, Decoded.
A kitchen-table guide to open-heart surgery for kids with congenital heart disease: why they stop the heart, who needs the heart-lung machine, and what recovery looks like.
The Pulse Weekly Roundup: July 27-31, 2026
Blood Vessels in Minutes, Cath Labs Without Radiation, and the Zip Code That Decides Your Survival
"Give Me the Numbers.” What 1,297 CHD Parents Unilaterally Declared About the Information They Actually Need
The research proves that parents of children with congenital heart disease want the hard facts, not mere reassurances. Why "less is more" gets it backwards, and what real translation looks like.
Tetralogy Of Fallot Repair Isn't the Finish Line: What Families Need to Know About the Long Term
TOF repair is a starting gun, not a finish line. The survival stats, the valve that leaks, the quality-of-life research — decoded for heart families.
The Pulse Weekly Roundup: July 13-17, 2026
There's a striking narrative thread this week: Jonathan King's story, the FUEL FALD data, and the septation procedure form a SV triptych — the problem, a potential treatment, and potential alt pathway
The Pulse Weekly Roundup -- July 6-10, 2026
Quite the range this week — from access equity in Hawai'i and Malaysia, to the medication burden nobody's mapping for kids, to a headline that got a full source-chain autopsy by yours truly!
🕵🏻♀️ DEBUNKED: The Telephone Game - CHD Edition.
How a 2% Risk Factor Suddenly Became the “Primary Catalyst” for CHD
🔬DECODED: Pediatric Medical Trauma Stress
What Medical Trauma Actually Is — and Why Parents of CHD Children Live Inside It
DECODED: The “Failing Fontan”
What the term means, what it doesn’t, and why Fontan care is really lifelong system management.
The Missing Link Between Your Child’s Gut and Their Brain
Your child’s brain development has been shaped by factors mostly out of your hands. The gut microbiome might be the first one that isn’t.
🔎 DECODED: Perfusion
This one concept connects your CHD child's liver results, exercise tolerance, brain development, and half of what the cardiologist monitors. Here's how to see it.
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🔬DECODED: The CHD Gut Microbiome
What parents need to know about the science connecting their CHD child's heart, gut, and brain development.
Failure to Launch?
Transitioning From Pediatric to Adult CHD Care (And What You Can Start Doing About It Now)
📰 FRESH SCIENCE: On The First Feed of Critical-CHD Newborns
New research shows parent presence is 5x more powerful than any other factor at a Critical-CHD baby's first feed. Fresh Science breaks down what it means for your family.
Do Pulse Oximeters Work the Same on Everyone?
Skin Tone, Accuracy, and Your CHD Baby
Clockwork Hearts - A CHD Community Call-to-Action
The CHD community doesn’t need a single voice — it needs to hear the one it already has and use the mechanisms it has already built.
CHD and Growth Failure — Or, The Second-Gear Baby
Your heart baby’s body is working harder than you think, burning more fuel than you’d expect, and keeping less of it than it needs. Here’s what the research says.
Yelling From the Rooftop - Part 2
How one researcher's fraud nearly silenced the most promising therapy for HLHS babies — and what a money trail through tax filings reveals about who really decides which children get saved.