Between the Beats

07/01/2026

Sharing this because it is one of those CHD stories that makes you stop for a minute.

A Shanghai couple who lived very simply donated their savings to help children with congenital heart disease receive treatment. Their gift helped 455 children.

It is a beautiful story of generosity, but also a reminder of something bigger: pediatric heart care is not only about what doctors can do, but also about whether children can actually reach that care.

For those 455 children and their families, this isn’t abstract kindness.

It’s everything.

An elderly Shanghai couple donated 5 million yuan (US$690,000) before their deaths to help 455 children with congenital heart disease.

06/25/2026

“Failing” is a heavy word. But in the world of Fontan care, it’s often just the beginning of a new chapter in management. 📖✨

For years (decades even), this phrase has carried a weight it doesn’t always deserve. When looking at the research, I saw something incredible: a system that is resilient, adaptable, and capable of finding workarounds.

But every great advocate needs a map. 🗺️💪

Information is the light that dispels the shadow of vague clinical jargon. I’ve decoded these terms to give you the precision you need for your next cardiology appointment. Management isn’t a fallback—it’s a proactive strategy. It’s about widening the path and strengthening the heart’s resolve.

We’re moving away from the fear of a "failing" system and toward the power of a "managed" one.

Get the facts. Find your voice. Let’s change the narrative together.

🔗 The full deep dive and translation map are waiting for you at the link in my IG bio.
Or simply go to http://tiny.cc/FailingFontan

06/22/2026

Hi. I'm Marie-Jo, and this is Between the Beats.

I'm the mom of a daughter with a complex congenital heart defect. She was born with tricuspid atresia, she's had two open-heart surgeries, and she lives with what's called a Fontan circulation. If you know, you know. If you don't, that's OK too; you're in the right place.

When Aveline was diagnosed, I did what a lot of us do: I Googled. I read. I asked questions. And then I hit a wall. The research was out there, but it was locked behind jargon and paywalls and 47-page PDFs that assumed I had a medical degree. The parent forums were full of heart and a boon when I desperately needed support, but light on science. And the space in between (the place where someone takes the actual peer-reviewed evidence and explains it like a human being) didn't really exist. And I really needed that, too.

So I built it.

I come at this from a bit of a different angle. While I became a full-time CHD parent (if we're being honest, that's its own career), I also spent 25 years in project finance consulting and multilevel risk analysis. I have 3 master's degrees (all collecting dust in a drawer somewhere).

I am not intimidated by dense research papers; I'm trained to pick them apart.

And when I started reading the cardiology literature with those same analytical eyes, I kept finding the same thing: families like mine weren't getting the full picture - in English OR French. Not because their doctors were withholding it, but because nobody was translating it and making actually useful for everyday life!

Between the Beats is that translation. I read the journals, I dig into the studies, I check the math, I read between the lines, and I ask the questions you'd ask if you had the time and the access. And then I write it up in a way that respects your intelligence without assuming you have a PhD.

So this page is for fellow CHD families — parents, caregivers, the grown-up heart warriors, the people who love them. It's for anyone who's ever sat in a cardiology waiting room and thought: I wish someone would just explain this to me.

Pull up a chair. I'm glad you're here. 🫀