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
How do you mend a broken heart? You’re operating on a heart and it’s got a tear in it. How do you seal it?
Sutures? Staples? These are the traditional answers, but they aren’t good ones. Both involve piercing tissue and creating holes, which is bad news for an organ that’s constantly moving, and vigorously pumping blood. Holes lead to clots. They also bleed.
on Monday, January 27, 2014
As the cohort of survivors with the single-ventricle type of congenital heart disease grows, it becomes increasingly evident that the state of chronically elevated venous pressure and decreased cardiac output inherent in the Fontan circulation provides the substrate for a progressive decline in functional status. One organ at great risk is the liver. Wedged ...
on Wednesday, January 1, 2014
The oral administration of probiotic products to infants with cyanotic congenital heart disease was associated with improved outcomes, including better survival, a Turkish randomized study found.
Among 100 infants given Bifidobacterium lactis plus inulin or placebo, 8% of the active treatment group developed sepsis compared with 28% of the placebo group (P=0.01), according to Dilek Dill...
on Wednesday, September 18, 2013