Friday, February 19, 2010

Congenital Heart Disease...Behind the Scar

At the end of the last post, I commented about Olympic gold-medalist Shaun White, who is a CHD (congenital heart disease) survivor.  I realized that I never posted last week during national Congenital Heart Disease Awareness week.  My friend Andrea (mom to Summer, lymphoma survivor and bone marrow transplant recipient) reminded me yesterday that before it happens to your family, so many of us go about life completely oblivious to the struggles of children with birth defects and chronic illness.  I have to agree.  I am an extremely different person now than I was two and a half years ago.  Heart disease colors every aspect of my life, even a "normal" pregnancy.  Our family is not alone.

Did you know that congenital (or "at birth") heart defects are the most common type of birth defect worldwide

Did you know that 1 in 100 babies born in the United States (about 40,000 babies each year) have a congenital heart defect and that the majority of those are undiagnosed during pregnancy and even throughout childhood?  A late-term sonogram saved Keegan's life.  A short, non-invasive, no-risk procedure that could save thousands, and yet is not yet routine in prenatal care in America.

Did you know that for 1 out of every 10 babies born with heart defects, it is fatal?  That means roughly 4,000 children in America will not live to see their first birthdays because of a congenital heart defect.  Many more will have just a few short years more to impact our lives.

Did you know that the leading cause of infant death in the United States is heart disease?

Did you know that the leading cause of sudden death during childhood is undiagnosed heart disease?  A simple, noninvasive, non-painful monitor called a pulse oximeter used on all babies at birth might help reduce that number greatly.  Most heart defects result in poor oxygenation of the blood.  Monitoring oxygenation levels on all babies for even a short period of time after birth could reveal undiagnosed heart problems and save many children.  Still, it is not yet mandatory in the United States.

Did you know that there are over 40 known types of heart defects and endless combinations of those defects?

Did you know that Children's Medical Center Dallas performs over 500 cardiac surgical procedures a year and over 300 open-heart surgeries per year?

Did you know that Children's has been performing cardiac transplants since 1988 and has since performed well over 120?  (Keegan was the 99th!)

Keegan is a CHD SURVIVOR.

And he's not alone.  We have met so many amazing CHD kids - Tucker, Karis, Hannah, Andrew, Natalie, Shelby...the list goes on and on.  You may not see it this way, but I think God has blessed each one of these incredible children with a gift.  An ability to inspire others, a strength beyond words, a light to shine in the darkest corners.  Each day while we mourn the loss of those who are no longer with us, we continue to be grateful for the days we have our survivor.  He has taught us so much more than we could ever have imagined.  As the days pass and scars fade, we remember this is the life of so many, and we promise to continue the fight as long as we are able.

Behind Your Scar...

Sometimes I have those "moments",
When I's just not fair,
Then I think of all you've been through,
And I see the scar you bear.
A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?
And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.
What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)
People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)
Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.
If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.
It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?
You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.
No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.
You've taught us to love one another,
(Helping each other to cope)
You've taught us compassion for others,
You've taught us to never lose hope.
You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

~Stephanie Husted, heart mom to Braeden (Hypoplastic Left Heart Syndrome)


Ashley & Chuck said...

A beautiful and informative post! Thanks for sharing!

Heather Elise Campbell said...

Maddie - it was so good to see you at Children's on Friday! I'm glad to hear that Keegan is doing well and has stayed out of the hospital. What an amazing boy he is -- the youngest and smallest in Texas to have a heart transplant! I'll be praying for him.