It's Congenital Heart Disease Awareness Week--Reflections of CHD

Three years ago on this day, we were inpatient at LeBonheur, preparing for Eli's open heart surgery the
following day.

It was OHS Eve.

You know that feeling you get when you are driving and you have a 'near miss' with another car?  That feeling that starts in your brain, moves into the pit of your stomach, camping out just long enough to make you sick, then moving down your legs, making you weak in the knees?

Yeah.  That feeling.

That's what OHS Eve feels like.  It comes over you in waves like the tide, pounding against your soul.  It whispers the details you fight so hard NOT to think about.  Over and over it comes, stealing your breath, knocking you to your knees as you watch your child sleeping in ignorant bliss.  Scary.  Scary for anyone at any time, but none more fearful than when it is your baby in that bed, in pre-op holding, being carried away by masked strangers, waiting to have his heart stopped.

No sir.

If you know me at all, you know that we are quietly celebrating a successful surgery three years later--thankful every day as we watch our son grow.

February 7-14th is Congenital Heart Disease Awareness Week.  This week someone you know will write a blog post or a Facebook status filled with personal CHD experiences or facts and statistics.  You may think no one you know in real life has experienced CHD.  You are probably wrong.

There are lots of us.

In spite of a lack of research funding compared to other serious birth defects and childhood conditions, the advancements made in care and treatment of Congenital Heart Disease over the past 20-30 years is amazing.  I can only imagine what could have happened if funding truly matched the level of need.

My oldest son might still be alive.

That's why CHD Awareness Week is so important.



A few facts for you taken from the March of Dimes website:

• About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States.  (Other organizations estimate closer to 40,000 or 1 out of every 100)
• The defect may be so slight that the baby appears healthy for many years after birth, or so severe that his life is in immediate danger. 
• Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths. 
• In the United States, about 1.4 million children and adults live with congenital heart defects today. Almost all are able to lead active, productive lives. 

CHD Awareness.  Pass it on.


*I'm working on posting our "CHD Story".  You can click the tab "Our Heart Story" on my header or by clicking here.  I'm hoping to have it posted today.