Why I Created Big Hearts, Bigger World

I started Heartbeat Forward because I believed, and still believe, that families navigating congenital heart defects deserve better resources than most of them currently have access to. Better information. Better preparation. Better support for the parts of this journey that fall outside the medical system but matter just as much.

One of the guides I created as part of this growing library was Little Hearts, Big Questions, written for the earliest years of a CHD child's life. The newborn days and the toddler months when a parent is trying to find words for something that feels almost impossible to explain, even to themselves.

But as I built that guide and spoke with families and listened to what they were carrying, one theme kept coming back to me. One moment that almost every CHD parent described with the same mixture of love and dread.

The day their child started school.

That moment sits at the heart of why I wrote this guide.

Because starting school is where so much changes for a CHD child. It is the first time they move through the world without a parent beside them to translate, to explain, to step in when a question comes that they are not ready for. It is the first time their scar is visible to people who do not already love them. The first time their medication is taken in a lunch hall full of curious eyes. The first time their physical limitations become socially visible in a way that can leave a child feeling profoundly different from everyone around them.

And most families arrive at that moment with no roadmap. No one has told them what to say to the school. No one has helped their child practise what to say when a classmate points at their chest. No one has thought through what happens when their child comes home one evening quieter than they should be, carrying something they do not have the words to explain yet.

I wrote this guide to be that roadmap.

I want to be honest about what this guide is and what it is not.

It is not a clinical resource. It does not replace your child's medical team, their cardiologist, or the specialist support that your family may already have around you. Those people are irreplaceable and I would never suggest otherwise.

What this guide is, is a companion for the human parts of this journey. The school gate parts. The scar parts. The sitting on the sidelines parts. The bedtime conversation parts. The I do not know what to say parts.

I wrote it because those parts matter just as much as the medical ones. And because the families I want to serve deserve support for all of it, not just the parts that come with a clinical pathway.

I also made a deliberate decision to write this guide for both parents and teachers equally.

That choice came from a simple truth: a child spends a significant portion of their waking life in school, in the care of adults who may never have supported a CHD child before. Those adults genuinely want to do the right thing. They want to protect this child's dignity, include them fully, and respond well when the hard moments come. They just, very often, have not been given the tools to do that.

So this guide speaks to them directly. It tells them what to know, what to say, what to watch for, and how to create a classroom where a CHD child feels like a full and valued member, not a special case to be managed.

Because the partnership between a family and a school can be one of the most powerful things in a CHD child's life. When it works well, it wraps a child in a consistent experience of being known, accepted, and supported across every environment they move through. When it does not work, the gaps show up in the child.

I wanted to help it work well.

The title of this guide, Big Hearts, Bigger World, is not accidental.

CHD children have big hearts. Not in the medical sense, though some of them do, but in every other sense. They have been through things that require a kind of courage that most people will spend their whole lives never needing. They carry a depth and a tenderness and a fierce aliveness that comes, I think, from knowing early that life is not guaranteed.

The bigger world, the school and the friendships and the social complexity of these years, deserves to meet that bigness with understanding. With preparation. With adults who know what they are doing and children who have been given the words they need.

That is what I tried to build here.

I hope it helps.

You can read and download the full guide, Big Hearts, Bigger World, for free at heartbeatforward.org/helping-children-with-chd-at-school

Deep Respect,

Adrian Adair Founder, Heartbeat Forward