Kids With Heart NACHD, Inc. Disclaimer:
The intention of this information is to give parents of children with congenital heart disorders a place to find information about specific disorders and other support resources. Kids with Heart National Association for Children's Heart Disorders, Inc. personnel are not doctors or medical personnel. In no way should any information found on this site be a substitute to professional medical care or attention from a qualified practitioner nor should it be inferred as such. ALWAYS check with your child's doctor if you have any questions or concerns about any diagnosis, symptoms, or treatments.
Site maintained and created by Angela Brooks and Michelle Rintamaki for Kids With Heart National Association for Children's Heart Disorders a 501(c)3 charitable organization.
We are happy that you found us and yet sorry that you need us but we want you to know that you are not alone- we are all affected by congenital heart defects in some way and that is why we are here! This beautiful poem by
Steve Cahoe, 42 yrs old,
with a congenital heart defect known as Tricuspid Atresia
to quote John Rintamaki, 22, tetralogy of fallot
"Pretty much says it all!"
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.
Steve Catoe
42 year old male with Tricuspid Atresia
South Carolina__._,_.___
