Friday, February 14, 2014

I'll Always Be A Heart Mom

Today is Valentine's Day.  You know, the day where everything around you is plastered with hearts.  My older kids like to refer to it as "Singles Awareness Day."  (Yeah, we can be a sarcastic bunch around here.)  But those hearts, yeah, those cute pink, white, red shapes, they represent the real thing.  That organ inside your body that does amazing work.  It's a simple pump, but for most of us, it works tirelessly, without a break, for 70, 80, 90 or more years.  Just moving along.  No replacement parts, minimal maintenance needed.   

But for some, about one in every 100 people, it doesn't quite work that way.  Those people, kiddos, babies really, are born with something "wrong."  That means that if there are 100 second graders in your kid's school, one of them was born with a congenital (meaning "birth") heart defect.  Really, they're all around you, on your son's soccer team, working at the store, even keeping your kiddo in the PICU breathing while waiting for their own next procedure (really!).  They're heart warriors.  

Many, many heart defects have gone unnoticed, undiagnosed until they've caused damage or even death.  Now there's a movement to mandate a simple, painless, inexpensive newborn test to check.  Named after a precious newborn, Cora, Cora's Law would require a pulse oximetry test for all newborns to check oxygen levels in their blood.  

No pokes, no pain, it uses light to measure, just like when you go to your doctor's office and they put the little clip thing on your finger for a few minutes while they take your blood pressure.  Aaron is actually on a pulse/ox all the time.  It lets us know how much oxygen he needs.  And it can help identify which "healthy" newborns actually need help while there's still time to get it.  You can read more about the details of the testing here.

This month is CHD (Congenital Heart Defect) month.  Kinda fitting that the month where we celebrate love, right?  Here's an essay written by a heart hero.  He says it so well.  And if you want to know what it's like to be a "heart mom," don't miss the video.  Well done, short, and oh so real.  Enjoy.

And share this post.  You know someone who is pregnant or who will be pregnant.  Who knows?  You may help save a child's life, and a mother and father's heart.

Who are we?

Start counting... we're roughly 10 out of every 1,000 people (or 1 out of every 100, 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, 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.

written by:  Steve Catoe, CHD survivor and power-voice, who passed away November 2010, at 44 years old

No comments:

Post a Comment