On the first day of CHD Awareness Week, I have been thinking about what CHD Awareness means — why is it so important? To answer that, I think I have to go back to that very first day when I heard that there was something wrong with my baby’s heart.
You see, I read What to Expect When Your Expecting cover to cover. I feared many things that the book said could go wrong, particularly the cancerous molar pregnancy, which, although very rare, terrified me. I was tested to see if the baby had spina bifida or a chromosomal abnormality, which I believed were the two main things to worry about. I also had two boys already, and I had learned so much taking care of them. I was PREPARED! Or not.
You see, no one told me about the MOST COMMON BIRTH DEFECT in the U.S. I had never even heard the words “congenital heart defect” in my life. In fact, Mended Little Hearts did a quick survey a few years ago and found that 51% of parents — more than half — had never heard of congenital heart defects before their child was diagnosed.
That diagnosis — a diagnosis of a heart defect that is 100% fatal if left alone, that required not one but THREE open-heart surgeries before age four, that cannot be fully fixed with today’s technology — left me in a place of intense fear, devastation and anger. But most of all, I felt alone.
I felt alone because I had no idea that each year 39,999 other mothers also learned that their child had a congenital heart defect and that 9,999 other mothers learned that their child’s defect would require surgery or medical intervention just so their child could survive.
I felt alone because I had no idea that two-to-four MILLION Americans are living with congenital heart disease and that more than half of them are over the age of 18.
I felt alone because I didn’t know there were so many others out there with my same feelings, some that I was ashamed of, and who were dealing with this disease too. I didn’t know that they, too, were experiencing anxiety, depression, anger and symptoms of Post Traumatic Stress Disorder.
Yes, CHD Awareness is important because vital research is underfunded, and we need this for our kids to live long, healthy lives. But when I learned about my son’s heart defect, after wanting to know more about the defect itself, the first thing I wanted was connection — someone to talk to who would truly understand me, someone who would make me feel less alone.
So as we enter this week and do all we can to raise awareness of the number one birth defect in the U.S., know that we are letting families all over the country know that we are here for them; that they are not alone. And that, my friends, is priceless. — Jodi Smith Lemacks, Esq., Mended Little Hearts National Program Director