An Open Letter to Congenital Heart Disease

Dear Congenital Heart Disease,

I hate you.

No really. I really, really do.

Hate is a strong word, I know. It’s one I tell my children not to use. But for you, CHD, it is more than fitting.

From the moment we met you, when our son was diagnosed with hypoplastic left heart syndrome when I was 17 weeks pregnant and the doctors held my hand and gently suggested termination, I’ve revered you with equal parts loathing and fear.

We didn’t choose termination. We chose to fight you. We chose to fight for our son’s life. But wow, has it been a fight.

You’re a ruthless enemy. You steal young children before they’ve even had a chance to fight. Sometimes, you let them stay a bit, only to steal them once their families have gotten to know them, to love them, to begin to dare to hope for a future. Sometimes you wait until they’re thriving and growing young adults, or husbands and wives with families. And suddenly, they’re gone. Just like that. And sometimes you don’t steal them entirely – just parts of them, as if somehow that’s easier to bear. Their ability to walk, to talk, to think. You are cruel, and, excuse the pun, heartless.

But I have news for you, CHD.

We’re coming for you.

Surgeons, nurses, cardiologists, therapists and most of all, parents.

You should be scared. Very, very scared.

We are tired of you calling the shots. Gone are the days when we blithely accept a 0 percent survival rate for conditions like hypoplastic left heart syndrome. Gone are the days where we are told to expect less of our children with congenital heart defects.

These children are growing. They’re thriving. Like my son, they’re surviving surgeries to go on and live amazing lives. They’re playing sports. They’re going to kindergarten, to elementary school, to junior high, high school, college and beyond. When you see them running on the playground at school, unless they lift their shirts to share their scars, you won’t know. They look like any other child.

For the first time in history, there are more adults living with CHD than children. That’s no accident. That’s the result of diligent efforts across the board to improve survival rates and quality of life

But we want more. We’ve demanded more. And we’re getting more. We’re advancing on you, CHD. Oh, the advancement is slow. Painstakingly slow. Not nearly fast enough for parents. Probably not fast enough for my son. But make no mistake, we are gaining ground on you.

Thanks to advancements in surgery, children are surviving who simply would not have years ago. Had my son been born 40 years ago, he would have died within a week of birth. Thirty years ago, he could have had “experimental surgery” – now that surgical course is standard and has survival rates of over 75 percent. The landscape for treating congenital heart defects has changed dramatically.

Thanks to parents and practitioners working together, through organizations like the National Pediatric Cardiology Quality Improvement Collaborative, we’re improving outcomes for children diagnosed with CHD. Because we know there is strength in numbers and success in teamwork. And if we’re going to beat a formidable foe like you, we must marshal our resources and work together.

Thanks to all of the advancements on the horizon (stem cell therapy, ghost hearts, mechanical hearts), there is more hope for children born with CHD than ever before. And we don’t expect that technology to slow down anytime soon.

Like I said, we’re gaining on you, CHD. We’re not there yet. But you should be looking over your shoulder, because every day, we’re inching a little closer to catching up with you.

And when that day comes, oh when that day comes when we finally catch you, it will be a glorious day.

Follow this journey on Hope for Baby Bennett.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.