written by Amanda Rose Adams

When I was a little girl, I loved my LiteBrite toy. There was something magical about assembling all those little colored pegs, to then turn out the lights and see a birthday cake or an ice cream cone lit up in front of me. As I approach yet another year as a heart mom, I want to focus less on my little peg and more on the constellation that makes the bigger picture of our “Heartland.”

This is my twelfth February as a heart mom. My first February, in 2003, I didn’t know about CHD awareness week or heart month or really anything about congenital heart defects. I only new my unborn son was missing half his heart and and I was being offered termination for the second time in a month.

It didn’t occur to me, as my own awareness was just dawning, that many babies have heart problems. Even though my brother-in-law had a “heart murmur,” I didn’t understand that he too had a Congenital Heart Defect, or that his heart murmur was something he was born with, not just something discovered when he was running track. It turned out that I knew several people with CHD before my son was diagnosed, I just didn’t know what a heart defect was. Nobody, including myself, seemed to understand that a murmur, a hole in the heart, and a missing valve or ventricle were all congenital heart defects. No one I knew saw the big bright picture, and it took years to form for me.

Over the years, my awareness efforts escalated. I founded a support group for “already aware” parents of kids with his type of CHD, raised tens of thousands of dollars for CHD research, spoke to TV reporters, spoke on stage in front of groups of ten to ten thousand, started a blog, wrote a book that was published, and shouted from the mountaintops – almost literally, I live in Colorado where I’ve been advocating for high altitude newborn pulse-ox screening for the past two years.

Sometimes I feel like I’m preaching to the choir with all of my awareness efforts. It seems that, when I’m on television or the radio, the people watching already know me and my message. Where I believe I build the most awareness is through everyday encounters when I “out” myself as a heart mom.

Invariably, strangers and newer acquaintances reveal to me that they know or knew someone with a heart defect. Everyone knows someone with a heart defect, they just aren’t aware that it’s the most common birth defect. They don’t realize that the unique person they know isn’t so unique in this way. They don’t see the big picture, even though they’re holding one of the pegs.

In December, I hosted a baby/adoption shower, and four people under my roof (more than 10%) had heart defects. One was my son, and the other three were coincidental CHD survivors. From a new baby to a toddler to a thirty-seven year old woman, all of the cardiology patients in my home were under 40 years of age. None of them were part of my heart-mom community, They were simply people I knew from everyday life. Those of us affected by CHD are everywhere, hiding in plain sight.

My son’s story and our family peg is just one little light in a bigger CHD picture. Heart defects are everywhere, and CHD is bigger than one person, one story, one peg. Yet, if those pegs are missing, the picture isn’t clear. I hope that those touched by CHD, in any way, will plug in and help illuminate the message of awareness.