I sit back and reflect on the day that we received Quinn’s original diagnosis...
I remember sitting in that room staring at the ultrasound and her very broken heart wondering how had I never really heard about this? Nowhere in any of the multitude of books and birthing classes did it even utter mention of heart defects.
I mean I guess I probably did hear about it at some point…. or had seen or heard something about it on social media and just kept scrolling. But honestly, how could I be so incredibly ignorant?
What do you mean that congenital heart defects are “VERY common?” It obviously wasn’t that common that I, Miss-Research-Everything-Mama, didn’t really and truly know this was a common thing, right?? … or was it and I was too focused on the other grave and unjust childhood illnesses that we hear about more frequently.
It took a matter of .02 seconds to realize that even with all the rare and specific heart problems that can occur, that congenital heart defects as a whole were more common than I even wanted to admit to. 1 in every 110 babies born have CHD of some sort.
Guilt waved over me in an instant. Humility overcame my ignorance and my need for awareness become great. No matter what my little girl’s outcome would be, I knew it in my WHOLE HEART that I would make CHD known for these kids without one.
I had my own heart problem. My heart was emotionally broken for these babies and kids with physically broken hearts with no real cure.
So here I am…. starting my wholehearted pursuit for awareness… for Quinn, for these babies, for these kids, for each and every heart mama, heart dad, heart baby, heart warrior and heart angel out there.
Besides being blisteringly underfunded for research, I do this so these parents and kids know they aren’t alone. So they know there is another parent out there experiencing the same anxiety over oxygen levels and heart rates, another family spending the first days, weeks, months of their child’s life in the CICU, another baby fighting for their lives one heartbeat and breath at a time ….
And that while it can be a lonely, painful and emotional journey, that there is a community of HEARTFELT people here for them that will not only support them with their connections, knowledge, comfort and love, but that we would be able to give financially so that their people can continue to receive the care & medical advancements that is essential for survival!
Please take heart and take the time to at least share this post …. it costs you nothing, but has the potential to mend a broken heart of the next heart baby — because every 15 minutes another CHD baby is born.
**Please consider supporting our team or even join us for the CONGENITAL HEART WALK in August!**