This is CHD Awareness week. I didn't used to think about Congenital Heart Defects. I guess we each know that things can go wrong during a pregnancy, but I never really thought about it the way I do now. We have learned so much as a family on this journey through Congenital Heart Defects. We are grateful to those who have spent time and energy studying the heart.
Here are a few facts about CHD.
*Every fifteen minutes a baby is born with a CHD.
*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).
*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.
*This year almost 40,000 babies will be born with a congenital heart defect.
*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.
*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!
*There is not yet a preventative cure for any type of congenital heart defect.
*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.
I found this poem written by another heart mom. I haven't had to deal with everything this poem mentions, but we have learned about a lot of them. Our lives have been forever changed because of our journey into CHD. Joshua was born with tricuspid atresia(the right side of his heart didn't form correctly), TGA (His great arteries are on opposite sides of where they should be) and a VSD (A whole in the ventricle of his heart).
What is a CHD???
You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day. This is...a CHD.
**Written by Stephanie Husted (fellow heart mom)
We need to spread the word. Be aware of signs and symptoms. Be a registered organ donor. Too many children die while waiting for the heart that never becomes available. Don't take for granted the time that you have with your loved ones. Consider a donation to a foundation that supports CHD families and research.