Meet the model embracing "scar inclusivity"
Andrianna Acosta had open heart surgery at 8 months old. Her zipper scar is not a flaw.
Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the free newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus essays, links, recommendations, reader threads and other good stuff about living with a wonky heart. Join this community and ensure you don’t miss the next edition.
I had never seen a model with a heart-surgery scar until I encountered Andrianna Acosta. The marketing professional, part-time model and CHD advocate, who lives in Philadelphia, has found success working with brands that understand her scar, including in campaigns for Michelob Ultra, Newman’s Own and Spirit Halloween.
As a baby, Andrianna wasn’t eating, and her skin was blue; her mother thought something was wrong. Doctors diagnosed Andrianna with a ventricular septal defect—a hole between the two ventricles—the size of a dime. She had an open heart surgery at 8 months old, leaving her with an 11-inch scar down her chest.
About four years ago, the 28-year-old started modeling. In one of her first jobs, she was taken aback when a photographer edited her scar out of the pictures. “It was just the weirdest thing,” she said. “It didn’t look like me.” I spoke with Andrianna about how she handled the situation and what she tells clients today.
What was it like growing up with a congenital heart defect? Did you feel different?
It's funny because having a scar since birth, you don't really know life without it. It's not like you fell and got hurt and you just have this new scar. For most of my childhood, it was just all I knew. And then once I was 13 through 17—those years where you're a little more self-conscious and you're a little more aware of your self-image and you start comparing yourself—that's when I was really like, what the heck is this? Why do I have this scar right in the middle of my chest? I thought it was annoying because I couldn't relate to anyone. I didn't really know too much of my story, so I felt like I couldn't defend myself when it came time to people saying, “What is that? Can you cover it up?” Or, “They make stuff that helps shrink scars.” As a teen, I started wearing lots of hoodies and sweatshirts. I loved turtlenecks. I mean, I still love turtlenecks, but as a teen I would love wearing turtlenecks, and it was more of a, “My sweatshirts have to be all the way up.” I was just very self-conscious in that way.
Was that because you didn't want to talk about your scar or you didn't like the way it looked? Or all of the above?
All of the above. My high school years, I felt like anything I wore, the first thing people see is this thing on your chest. And I felt like that's where a lot of eyes went. I just felt very exposed. I didn't want anyone to see it. I didn't want to hear the questions because internally I didn't have answers.
For me, I was going to the hospital once a year for tests. Did you have that kind of experience, or was it really just the scar that was the manifestation of CHD for you?
Throughout my entire childhood, I went to my cardiologist. It was a routine that was just so natural for me. When I was in high school, I was a cheerleader and I also played tennis. It came with the struggle of, okay, now I have to get medical clearance in order to play any type of sports. That was a whole other thing. As I got a little older, I started understanding, okay, there's a lot of issues here that I have to deal with—going through my cardiologist, getting the medical clearance, or having this school nurse say, “You know, you still have a little bit of a heart murmur. Is that okay?” And I'm like, “Yeah, yeah, that's fine. It's fine. I've had it all my life.”
You said when you were around 19 or 20, thinking about your scar and your CHD changed. What happened to change your thinking?
All my life, I just went through the, “Oh, what is that scar?” “Oh, I had heart surgery,” whatever. I remember I had spoken with someone1 and I went through the same shtick. And instead of the typical response that I would get in high school from high schoolers, this was an adult. They were just so surprised. They're like, “Wait, what do you mean? What kind of heart surgery?” I didn't know all the facts, but I knew most of them. I explained everything to them. I remember them being so taken aback and amazed that I was like, oh, maybe I should find out a little bit more of what this is.
I became super intrigued at what exactly happened. I talked a lot with my parents, and I think that was also one of the first times my parents told me in detail everything that happened—the beforehand, after, the during and what they were feeling, what they went through. It was very, very surreal. It was almost like listening to a story, but it was weird because the story was about me. Since then I did a lot of research, and I became so much more involved and in love with my scar. Once I got into modeling it became very important to me to showcase that as well.
What were your parents like around CHD when you were growing up?
They didn't really know what to do. It's not like they had all the answers. Really, they felt very alone because it wasn’t how it is now—there's all these organizations and it's more talked about. My mom had this journal that she kept since before my diagnosis, when she had a feeling something was off. I read a few pages of it, and it was so interesting to read everything that she went through. In her pages, I can feel the emotional heartbreak and I can feel the hurt and anxiety that she had to go through with my dad and my family.
She was about my age. I can't imagine having your baby, not really knowing what's going on and having them say, “Okay, we want to wait to do this surgery because she's not heavy enough.” I can't imagine what she felt. I know they did have a lot of faith, and they balanced each other out, but I know that they must have felt very anxious. It's not like now where they can call from the hospital or send a picture. It was just very lonely.
Are they involved in your care now? How has that relationship changed as you've become an adult?
For the most part, I am pretty independent when it comes to seeing my cardiologist. There are some things where if someone asks me, “Hey, do you know the kind of mesh that the doctors used?” I'm like, “Oh, I have no idea.” My mom knows all that, all the nitty gritty of it. She still has some of the original Polaroids and pictures, and she has all the original doctor information. But care wise, I'm pretty independent.
You're very open about your CHD, but how does it affect your work life or show up with your coworkers?
It's funny because when I first started my job—or really meeting someone for the first time—everyone notices my scar, but no one wants to say anything. I remember I said something like, “I have a cardiologist appointment.” And that kind of opened it up. All my coworkers and my personal relationships, they all know my story and they love that I'm so involved.
It has definitely impacted the work that I do as a model and the campaigns that I do. I've definitely seen both sides of the spectrum where agents love the diversity and they love that it's unique and it's very relatable. And then on the other end of the spectrum, I've seen agents and campaigns and photographers that want nothing to do with it. They're like, “No, that's a blemish.” That's kind of hard to deal with.
When I first started modeling, I didn't really think too much of it because, again, I've had it all my life. It’s part of who I am. Then I remember a picture was edited without my scar. I saw it for the first time, and it was just the weirdest thing. It didn’t look like me. It's almost like seeing yourself with an extreme Facetune. I've never seen my chest so smooth. I said something to the photographer because I was just so confused. I was like, “I did not know you were going to do this. And honestly, it's offensive. I would appreciate it if these edits weren't posted. If they're my face up or a side angle, that's fine.”
And did they?
For the most part, yeah, they respected my wishes. I've had some agents say, “Well, you have to understand, we want to give photographers and campaign managers the option.” I'm like, but there's no option. There's no option. This is what you get. It's going to sound extreme, but it's almost like saying, take a picture and edit my arm off. That's not a realistic version of me. You can't just say, “Here's some pictures with her scar and here's some pictures without her scar, and she can do both.” Because that's not accurate.
I tried to convey that as dramatically as possible because I didn't want my agents and photographers to think that I was just emotional. It was very serious. You can't just wish a scar wasn't there. It doesn't work like that. It's not acne or hair color. I tried to make it very dramatic because it was. It was serious.
What's great now is the campaigns that I do, the photographers don't touch those images. I've done national campaigns where you can see my scar. It's so refreshing. Brands will allow that. It really speaks to the diversity movement that everyone says they're for, but they kind of forget the scar inclusivity aspect of that.
Have you had to turn down work because of your scar?
Yes, I have. It's hard because you second guess yourself. Is it a big deal? Am I just being dramatic? Is it just me? And then I have to remind myself, no, I'm not being dramatic. Why would I want to do something that isn’t an accurate representation of me? Luckily, I haven't had to [turn down work] all that much, which is really nice.
I wonder if it's also that it's not just a physical feature. It’s a badge of what you've been through.
Exactly. The entertainment industry has made some strides when it comes to inclusivity, but a lot of times we focus on gender and race and size. But the things that make us different and the things that really unite us as a species altogether are scars. Everyone has them. So trying to count them as a blemish or trying to remove them just so a picture will look pretty, well, then it doesn't look pretty because it's not real.
How do you talk about CHD with potential romantic interests?
The question at first is always, “Do you mind telling me what happened there?” I explain it and the work that I do. They're always just so amazed. It's never weird. My last relationship, he was just so encouraging with it. When I had my Holter monitor this past fall—I have it once a year—I had to explain, “Yeah, I have to wear it with everything. I’ll be done in a week, just work with me here.” For them, seeing all those wires and everything, it's a little scary. I just have to explain, it's okay. It's just a checkup.
How do you think about what the future might hold in terms of your health?
Sometimes I think about it. Not often though. Sometimes I think about what happens when I get pregnant and have a baby. What will the care be like? Will I be considered high risk?
Has having CHD impacted your mental health at all?
You know what? No, it hasn't. If anything, because I love talking about it so much, it’s brought me a lot of joy and happiness.
This interview has been condensed and edited.
This was possibly an aide at school, but Andrianna said she didn’t remember exactly who the person was.
I love this interview! It's so refreshing to see someone who is so comfortable with her body and who doesn't mind talking openly about her experiences. Great interview, Leigh! Thanks for sharing, Andrianna!