February is CHD awareness month

February 7-14 is CHD Awareness Week. If you feel so moved, we’d love for you to wear red for Daphne.

I want every single person to know about CHD and its prevalence.

The month of February is Congenital Heart Defects Awareness Month. Each year, the week of February 7-14 is CHD Awareness Week. If you feel so moved, we’d love for you to wear red for Daphne.

I wish we knew more about congenital heart disease and defects before our world came crashing down.

My anxiety always drives me to the land of Google.com and it isn’t always a productive space to find myself. One of the first things I was told at our anatomy scan was to try not to Google anything until we had more imaging done and knew more information about Daphne’s heart.

I still believe that was the right thing to be told, and it was the first time I listened. I didn’t Google. I didn’t go down the spiral of what-ifs and try to diagnose my daughter myself. I’m not a cardiologist. I didn’t want my growing baby to feel the anxiety and stress that I might have put her through if I went down the rabbit hole of unknowns during pregnancy.

Because at that time, we didn’t know. It wouldn’t have been beneficial to my health or hers.

And as we continued along this journey with our little heart baby, we were in the most caring hands. I believe in the depths of my soul they wanted to safe-guard us and normalize our experience, allowing us to deeply love our daughter and focus on being her parents, with the anticipation of her living a long and happy life.

Looking at Daphne, no one would have ever guessed she had a heart that needed some extra loving. After all, she radiated love. She had the biggest heart of them all.

But the statistics around CHD are staggering.

Congenital heart defects are incredibly complex. It’s nearly impossible to be able to tell parents, “here’s what to expect,” because of the complexity of each unique defect. The heart mamas I connected with leading up to and since Daph’s surgery each have a different story. The combination of heart defects are each unique, even if our babies share defects.

Still, I wish there were resources given to parents who are suddenly journeying alongside their little heart warrior.

Congenital heart defects are the most common birth defect in the world. One in 100 children – that’s roughly one child born every 15 minutes – is born with CHD. One in four children born with CHD will have a critical CHD that requires life-saving surgery within the first year of their life. And to keep going, 25% of those children born with CCHD won’t see their first birthday.

But who knew? We certainly didn’t.

According to the American Academy of Pediatrics, CHD is 50 times more prevalent than childhood cancer. Which means for each one (1) child diagnosed with pediatric cancer, fifty (50) children are born with congenital heart disease.

The numbers are hard to crunch, but based on the data and information I found, less than 1% of federal funding is allocated to CHD research. Comparatively, around 4% of federal funding goes to pediatric cancer research. Both are important and both are life-saving research. So why so little? And how do we raise awareness around CHD and its prevalence to help support more research efforts?

There is no cure for CHD. Only lifelong monitoring, which includes surgery (and multiple surgeries for so many kiddos), medication and lifestyle management.

Daphne had an extremely rare CHD called cor triatriatum. She also had more “common” CHDs – VSD, ASD, PDA. But her cor triatriatum was a critical one – one that required life-saving surgery.

Cor triatriatum makes up around 0.1-0.4% of all CHDs. Based on a 2005 study, fewer than 250 cases have been documented since its discovery in 1868. Overall, it’s hard to pinpoint exact numbers because it’s so rare. And there isn’t a known genetic mutation associated with it.

Talk about one insanely special girl we got.

Daphne’s Brave Heart

And what a brave girl she was.

We are incredibly grateful to Akron Children’s and their partnership to very quickly set up a fund in Daph’s memory and honor. We hope the efforts of this fund help other families navigating congenital heart defect and disease diagnoses – particularly when faced with open-heart surgery – feel seen.

Anyone moved to donate in honor of our sweet girl can donate at give.akronchildrens.org/daphne.

Say her name, talk about her. Daphne is and always will be the best parts of us, and to be able to continue to spread the light and love that our sweet girl continues to bring to us means so much.