February 7th-14th is Congenital Heart Defect Awareness Week. 1 in 110 babies are born with a heart defect and I didn’t realize this until my son was that 1. According to The American Academy of Pediatrics, there are over 40,000 babies born each year with a CHD, and it is the leading cause of death in babies under the age of one. In honor of my son and all of the other children and adults living with a CHD, I wanted to bring more awareness to our and so many others’ journey.
When our oldest son, Dylan, was born in 2008 we did not know he had a CHD called Tetralogy of Fallot. He had surgery at 5 days old and open heart surgery at 8 months old to help repair his heart. He is doing well today and is a very active almost 10 year old boy, but he does has annual cardiologist appointments and will need more surgeries in the future. There is no cure for a congenital heart defect, only lifelong treatment.
There are many different types of CHD’s and we have met many other heart families since Dylan was born. We help found and are still part of an organization called Mended Little Hearts of Indianapolis where we were to talk to other heart families and share our concerns, get advice or just be a shoulder to cry on. It’s been a complete full circle for us now almost 10 years later as we now get to share our experience with new families at the start of their heart journey with their child. It’s a club you don’t want to be a part of, but having other families who have been in similar shoes has brought so much comfort to us in our journey.
All of these heart kids have one thing in common—they are warriors. Kids are so resilient and although I wish Dylan wasn’t born with a congenital heart defect, it has helped shape him into the strong boy he is today and the even stronger man he will become someday. His CHD doesn’t define him, but is definitely part of him and always will be.