by I’m not ashamed to admit that before our son, I had no idea what CHD stood for, much less how much it would change our lives.
I remember after birth being told that our son had Down syndrome and thinking “so what?” Now to be clear, I didn’t think this because I thought it would be easy to raise a kiddo with Down syndrome. Rather I knew I could love him and care for him now and that we could figure out the Down syndrome as we went. It wasn’t important, and I didn’t need to do anything different in the moment that I didn’t do for our daughter when she was born. He needed cared for like any other baby. Feed him, change him, love him. I could do that, and the rest would come later.
But when he gagged and turned blue, was rushed to the NICU and we ultimately learned that something was wrong with his heart, I was absolutely terrified.
I knew that birth defects were a thing. Logically I knew that it could include any part of the body, but truth is that before that moment, I really hadn’t heard of tiny little babies having heart problems, much less having open heart surgeries.
Birth defects, in my mind, were things like missing a finger or a toe. That’s why parents count those things when their kids are born, right? Nobody’s worried about their kids heart, right?
But it happens. It happens more than I realized, more than most people realize. And when it happens, it feels incredibly devastating and overwhelming.
And this is why we advocate like we do. It’s why we push for the awareness. While I know that being aware most likely won’t make it any less hard to handle the news, but at least you would know you weren’t alone – that there is a whole tribe of strong, resilient men and women who have walked this path before you and are ready to come to your aid. More people will know what questions to ask at their ultrasounds, and what to look for after birth.
Over the course of the next week we will be sharing bits of information and stories. Please feel free to share the facts we post. If you’re a heart parent or know a heart kiddo, comment and share your own stories.
Remember that with awareness also comes much needed funding and research.
There may not be a cure for CHD today, but raising awareness and educating ourselves and others is one small step we can all take in the right direction.
