Providing support, education, and resources to those affected by congenital heart defects since 1985
Almost everyone knows someone affected by congenital heart defects and many of them think they are the only ones. Would this be you or someone you love? You are not alone, we are here for you.
It is our belief that education is power. Our goal is to provide you with the most complete resources available to make the decisions that are best for your "heart child" and your family.
Donations come in many shapes and sizes, some without it costing you a dime! We are a non-profit, IRS registered, 501 C 3 Organization. Therefore, all donations are tax-deductible and we thank you for your support!
How We Can Help
Kids With Heart offers a number of support systems, including group membership, bereavement support for families of those children that have passed on, as well as current news and events related to heart defects and Kids With Heart.
What Resources We Provide
Kids With Heart provides a selection of services, including parent matching and networking through our membership registration, a book store which includes a number of exclusive informational and support books, and a number of informational web links.
Kids With Heart, while focusing on supporting families who have to contend with heart defects, also actively pursues awareness of the group and of congenital heart defects in general. In this endeavor, we provide an awareness store, opportunities to volunteer or donate, and more information and background on the group itself, including direct contact information.
Who are we?
Start counting... we're roughly 8 out of every 1,000 people (or 1 out of every 125, if you want a number you can get your head around.) We represent both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.
We've made it through surgeries, hospital stays, infections, Endocarditis (infection of the heart), pacemakers, and heaven know what else. We've given gallons of blood, one vial at a time. We've fought back against tremendous odds. We've been so sick that we've scared the world's best doctors witless... and then amazed them even more when we've fought back.
We've celebrated our victories and we've mourned our losses. We know that most of those who came before us died, including 14 of the first 70 to have the Blalock-Taussig Shunt. We know that most of us shouldn't even be here and so we live every moment as if it is our last - because it could be.
We're Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We refer to our parents as Heart Dad and Heart Mom, and we use those titles as Badges of Honor. Why? Because they DESERVE them! They were the first ones to discover that a heart defect doesn't just break one heart, it breaks three.
We work, we play, we pay our taxes and we live our lives. We're in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.
We are people living with Congenital Heart Defects.
42 year old male with Tricuspid Atresia