Why I Give My Heart to CHDs (Congenital Heart Defect Awareness Week)

I’m often asked why I started blogging.

Like many moms, it was a way to document my feelings as a mom and all the “things” that come with it. For me, it was actually a therapeutic band-aid/call-to-action and I felt like I was obligated to share my story and experience as a new mother of a beautiful son that also was born with a congenital heart defect.

That was almost five years ago — and today I have an even more beautiful son with an amazing, caring and relatively healthy heart. And I’m still blogging.Thankfully, it wasn’t the worst thing ever written and it resonated with other moms who like me, felt overwhelmed, undereducated and totally alone. Somehow, our story helped us connect so we could feel like we weren’t the only ones together. 

It’s not as healthy as yours or mine, but no longer do I fair daily that he is turning blue. No longer do I have to keep him home in “a bubble” to shield him from illnesses like the flu. No longer do I have to think that he could stop breathing at night. My worries for the most part, thankfully, are just like any other parents, for now. 

But I certainly don’t take that for granted. Each year since my little man was born I’ve tried to make sure to do what I can to educated others about congenital heart defects (CHDs). Sometimes I’ve gone big with ceremonies, mayoral proclamations or TV segments. Sometimes I’ve written an article. But it’s hard no matter what. It’s like opening a wound that I wish would heal and go away. Unfortunately, it doesn’t “go away.”

I’m reminded each time I take off his shirt or give him a bath. It will never go away. And neither should my efforts.

But I’m not the only mom of a child with a CHD. What I thought was such a rare thing since I had never heard of it until Jackson, actually is more common than most people think with 1 in 100 babies born every year with a CHD. And thankfully with new technology and awareness, more of those children, like my son, are born and live a wonderful life with their CHD. But that’s not enough. There still could be more children saved – as infants in utero and as teens with undetected CHDs with a simple screening.

Unfortunately, these screenings haven’t made the priority list for many state governments or there isn’t enough funding to make this possible for the public. Thankfully, committed parents and organizations have banded together to offer these screenings and awareness as much as possible, but that’s not enough.

So now as my little baby turns into a boy, I’m faced with new adventures as a mom. And there will be many other adventures as a mom of a CHD kiddo. Just recently I asked my son if he knew what the mark on his chest was.

Of course, Mama,” he said. “It’s because so many people love me, my heart got too big.”

While one day I’ll need to explain that a little more, his explanation is better than anything I could ever explain.

That’s today’s challenge. And as he gets older there will be more. I can only hope I can continue to carry the mama challenge torch in efforts to reach one more child and one more mom affected by CHD.

To learn more about CHDs, please see: http://tchin.org/aware.

Looking for more stories of families affecting by CHDs, just take a look here.