What I’m writing about on the blog today is not my typical subject…but it hits so close to home, that I felt I had to share.
Do you know that congenital heart defects (CHD) are the most common birth defects?
Every year, about 40,000 babies are born in the United States with a heart defect.
February is CHD awareness month, so I thought I’d do my part to spread the word.
And I know this it the very end of February, but in reality, awareness is needed all year long.
Here is my reason for spreading awareness….
My now 16 year old son has a very significant heart defect.
He’s been through 7 major surgeries, each lasting between 7 and 15 hours.
Someday, I will write his story in more detail. But for now, every time I sit down to write about it, the words just won’t flow. The emotions it brings up, even after all these years, make it terribly difficult for me to recount our experiences. And I want to be sure to do him justice, so I’ll wait until the time is right to share more.
For now, here are a few facts about congenital heart defects:
* There are no cures; just surgical treatments.
* Of every dollar the government spends on medical research, only a fraction of a penny is directed to congenital heart defect research.
* There are 40 different types of CHDs.
* People with CHDs face life-long risks including (among others): growth issues, developmental delays, heart rhythm problems, and heart failure.
* CHD research is grossly underfunded relative to the prevalence of the disease. In the United States, twice as many children die from heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is 5 times higher than for CHD research.
* But even though the research is underfunded, death rates from CHDs have declined by almost 30% in the last decade due to medical advances. So, every bit helps!
I share all of this will you just to raise awareness, because with increased awareness comes increased funding. And increased funding, means that new treatments could be available in the future to help my son and the millions of others who are living with CHD into adulthood.
As a heart mom, here are my suggestions for anyone who wants to help:
- Spread awareness by passing along information
- Donate to organizations like The Children’s Heart Foundation
- Pray for those afflicted with this disease
- If you personally know anyone walking this difficult road, offer to help them in any you can (especially in the beginning and during any surgeries). Even small gestures are so very appreciated.
To the parent of a child who’s been recently diagnosed with a CHD, my advice to you is:
- Find other parents to talk to (through Children’s Heart Foundation, Mended Little Hearts, your local children’s hospital, etc.) It was invaluable to us, especially in the beginning, to talk to other parents who had been in our shoes.
- Talk to a counselor to deal with all of the emotions surrounding diagnosis, testing, and surgery.
- Pray! I couldn’t do this alone. I need God’s help and prayer was and is my anchor.
To all of the Heart Warriors and their families, I pray for blessings and health!
These heart babies are so special. They have strengths that inspire everyone around them. They usually have other issues besides the heart issues, and day to day life is not easy. I have never heard your son, my grandson, ever complain about anything. How many times have we said, “He’s such a trooper!” Well, he’s that and so much more!
Thanks, mom! Yes, he has overcome such obstacles and through it all, he remains steadfast and content.