Today is the last day of Congenital Heart Defect (CHD) Awareness Week, and as many of you already know, I have a very personal experience with congenital heart defects. I’ve blogged about this in the past, but this week, it’s all about raising awareness and getting people to learn and talk more about this very important topic.
Shortly after our daughter Delilah was born, we learned that she had a severe atrial septal defect that would require open-heart surgery to repair. Needless to say, this news was terrifying.
Delilah was our second child and we had never really considered the possibility of one our babies being born with any type of health challenges, especially something as severe as a heart defect that would require open-heart surgery. But the truth is, this type of situation is far more common than most people think.
The Centers for Disease Control and Prevention (CDC) recently estimated that each year about 2,000 babies in the United States are born with an atrial septal defect, while approximately 40,000 babies are born in the United States with some type of congenital heart defect. About 1 out of every 4 of these babies is born with a heart defect that is defined as a critical CHD. Babies with critical CHDs need surgery or other procedures in the first year of life.
That means that roughly 1 out of every 100 babies is born with a congenital heart defect. To put that in perspective, that means that over 3 million people in the United States have congenital heart defects. That’s comparable to the entire population of Mississippi, Arkansas, or Iowa!!!
Raising awareness not only means getting people to talk about CHDs, but also helping people gain a better understanding of what they are and where to find support and information.
The word “congenital” means existing at birth. The terms “congenital heart defect” and “congenital heart disease” are often used to mean the same thing, but “defect” is more accurate. The heart ailment is a defect or abnormality, not a disease. A defect results when the heart or blood vessels near the heart don’t develop normally before birth. (American Heart Association, 2015)
There is an amazing support community and network through the American Heart Association and the Children’s Heart Association that is dedicated to serving people who are dealing with the devastating effects of CHD. People can connect with others who are sharing their journey, find encouragement and inspiration, and/or offer their own words of wisdom. You can find this online community at http://supportnetwork.heart.org/smallestsurvivors
During Delilah’s treatments, testing, preparation, surgery and hospitalization, we were able to find strength through the love and support of all our friends and family. Everyone on Team Delilah helped our sweet princess make it through her surgery and recovery. I can’t tell you enough how much it meant to our family to have the support of so many people around us.
So during this CHD Awareness week, I invite you to learn more about this topic and support those around you who may be dealing with CHD on a very personal level. Your love and support means so very much, and I say that from experience.
And oh yeah, you may be wondering how our little princess is doing now? Well I’m happy to report that she is doing great and living life like a normal kindergartner. She is an amazing little girl who loves to draw, play with her friend and soft toys, and spend time with family.