Unseen, but Not Unheard: Congenital Heart Defect Awareness Week

April is Autism and Stress Awareness Month, August is Psoriasis Awareness Month, November is Diabetes Awareness Month and December is National HIV and AIDS Awareness Month, according to Medical News Today.

February is National Heart Health Awareness Month, so all month long expect Hoops for Heart campaigns, red ribbons plastered about in hospitals and The Real Cost anti-smoking ads to pop up on your feed more frequently.

I’m going to direct your attention to a part of February – specifically February 7 to February 14 – that is often lost in the broadness of Heart Health Month and the glitz and glam of Valentine’s Day (which is also heart-themed). This week has a ribbon of its own – red for heart disease and blue for “present at birth,” or congenital. This is Congenital Heart Defect Awareness Week.

Congenital heart defects or diseases (CHDs) are, according to Children’s Healthcare of Atlanta (CHOA), birth defects that affect the structure and functionality of a heart. Many hospitals and medical organizations offer support programs for those with CHDs, but because they are so rare, CHDs and the struggles that accompany them often go unnoticed by others.

I was born with a CHD called Tetralogy of Fallot (TOF), a combination of four heart defects that cause oxygen-poor blood to flow out of the heart to the rest of the body, according to Mayo Clinic. As soon as I graced the world with my presence, I was rushed into the first of two open-heart surgeries I would need before I turned two, and to this day I rock an eight-inch scar down the center of my chest to tell the tale.

If TOF sounds familiar, it’s because Olympic snowboarder and skateboarder Shaun White has it, too. So does one of comedian Jimmy Kimmel’s sons.

If you’re a fan of Alan Rickman (Professor Snape), you may be able to recall a made-for-TV film called “Something the Lord Made,” a biographical drama about cardiac pioneer Vivien Thomas and surgeon Alfred Blalock who, together, attack TOF and in doing so revolutionize the practice of heart surgery. The film won three Emmys.

And here is where my advocacy for recognizing CHD Awareness Week comes through: I used to hate that I had TOF and the scar that accompanied it.

When I was in elementary and middle school, and for most of high school, I was ashamed of my scar. I put many restrictions on what I could wear to ensure that it would remain hidden – no V-necks, no jewelry, nothing that would draw attention to it. If I went to the pool, I didn’t swim – I wore t-shirts over my swimsuit and sat on the edge of the pool, dipping my legs in. The prom dress selection becomes very slim when you weed out the dresses that wouldn’t cover my scar.

I never told anyone I had TOF, either. It was my problem, not anyone else’s, I’d tell myself. My parents wanted me to show off my scar as a badge of honor, a sign of bravery. I just saw it as another thing to worry about.

Scar insecurity is a common issue many face, and it often goes unheard of. According to the abstract of a medical review on scar insecurity, there is limited treatment to help those who suffer from scar insecurity, and majority of doctors often lack training in the recognition and management of scar insecurity. This is because the premium placed on beauty stigmatizes scars as something “ugly.” Even today, scars are used to portray evilness in media, which can be seen in the villains of children’s movies.

I’m not the only one who doesn’t see their scar as something good. Countless people with CHDs experience insecurity relating to their scar – the American Heart Association (AHA) often publishes spotlights on those that overcome heart-related challenges and has a section specific to those with CHDs.

In one such article, a survivor of a ventricular septal defect (a “hole in the heart”) had to receive open-heart surgery to treat it when she was seven months old. As a child, model Adrianna Acosta would hide her scar because “nobody else my age had that,” she told AHA News.

If a part of it was exposed, she said, her classmates would point at it and ask her why she had it. She used to write in her diary about how much she hated her body and wished she could change her scar. She overcame this after reading a journal her mother kept that documented all her struggles up to and after her surgery, and she realized her scar told a story of survival – and she was proud of that.

I overcame my hatred for my scar after learning that CHD Awareness Week existed, in the latter half of 2022. I was browsing the shops of Etsy and Redbubble looking for new stickers to cover my laptop and I came across a red- and blue-ribbon sticker on Redbubble that had “COA” written on it (COA stands for Coarctation of the Aorta, a type of CHD).

Out of curiosity, I looked for a TOF sticker and found one (which I bought this year and now proudly display on my laptop). Then I went to see if Etsy had any similar stickers, and it had so much more. T-shirts, sweatshirts, pins, framed artwork – all displaying this red and blue ribbon.

Upon further investigation (read: googling), I learned about CHD Awareness Week, and then I understood that my scar was something special. Here I was hating my scar while a whole community on Redbubble and Etsy and at CHOA and AHA were celebrating it. I wanted in on that. I spent $98 on CHD-related merch on Etsy and Redbubble this year.

It was because of CHD Awareness Week that I felt seen. I finally had an outlet that wanted people to show their scars, not hide them away. I hadn’t had that before. I no longer felt alone. I cried for hours.

I didn’t like that I learned about CHD Awareness Week through randomly stumbling upon a COA sticker, though. My cardiologists never told me CHD Awareness Week existed, despite their offices being smothered in Valentine’s Day and Heart Month decorations.

After another Google investigation, I am happy to report February 7 to February 14, 2024 has been officially recognized as CHD Awareness Week in Georgia by Gov. Brian Kemp. I am hopeful this will mean more people will be exposed to CHDs and be prompted to support their local cardiology centers and hospitals.

It’s an uncommon struggle, but that doesn’t mean it shouldn’t be brought up. Future children with CHDs should be able to proudly show off their scars as a memento to their bravery. I hope to never meet someone with a CHD who thinks it is something that should be hidden.

I implore everyone to wear red and blue from February 7 to February 14 to show support. If you have a CHD or know someone with a CHD, hype them up. Don’t make them hide their scars.

It’s 2024 – let’s stop villainizing our scars and start recognizing them as the badges of honor and bravery they are.