“We're allowed to be mad at our bodies”

A former TV news reporter opens up about having a congenital heart condition in the public eye

When she was a TV reporter, Leah Drake didn’t cover up her heart surgery scar.

Welcome! This is The Heart Dialogues, a free newsletter for people born with heart conditions (and the people who care about them). Join this community by adding your email below. Every other week, you’ll get an edition in your inbox with candid conversations, essays, links, recommendations, reader threads and other good stuff about what it’s really like to live with a weird and special heart.

Leah Drake calls her congenital heart condition her superpower. It has helped her empathize with interview subjects during her work as a TV news reporter. But Leah is also a realist. She has struggled to lug around camera equipment on hot Florida days while her heart is beating off kilter.

“When I have a good day, when I'm feeling good, I'm not having arrhythmia, I'm not having any of the other symptoms, I don't think about it,” she says of her heart condition. “Honestly, probably that's a good thing. But those [days] are few and far between.”

Leah, whose professional name is Leah Shields, was born with tetralogy of Fallot, a combination of four heart defects. Diagnosed at birth, she had open heart surgery at 4 months old and a pulmonary valve replacement at age 15. The 28-year-old lives in Jacksonville, Fla., with her husband. 

Although she now works as a communications and engagement specialist for the state’s attorney office, she spent years as a reporter for a local TV news station, where she often appeared in outfits that showed the scar on her chest. She did several segments on families with young children dealing with heart issues, as well as sharing her own story during broadcasts and on social media. 

We spoke about what goes through her head when people side-eye her scar, the complicated math involved in the decision to have biological children, and why we all need space to be pissed off at our hearts. 

What was it like growing up with a congenital heart condition? 

I had my first heart surgery at 4 months old, and so you just grow up with a scar on your chest to the point where you don't even think of it. Maybe if other people noticed it, they just didn't come to me about it. I don't remember being asked about it as a little kid. I don't remember other kids asking about it or anything like that. I do know I couldn't do contact sports. I really wanted to do some sports, though I was not good at all. I remember I would have to wear a chest guard, and it was really tight over my chest. I would get out of breath really easy, and I’d have to put my hand in the air, wave down the coach if I wanted to play.

I knew I was different, but lucky for me, the stuff I was interested in usually wasn't sports. Most of the time I had interests that were fine—theater and stuff where I didn't get out of breath. But then I had my second open heart surgery when I was 15. 

You grow up being told that all along, you'll need heart surgery. My mom remembers more. She says I had symptoms and stuff. I don't remember that. I just remember being a freshman in high school. I think I had a boyfriend at the time, I was doing musical theater. And then I remember one day they sat me down, a few months after a doctor's appointment where I had an MRI with contrast [dye], and told me I had to have heart surgery. And it was life shattering [at the time]. I thought I was dying, and this is it. I think the surgery only had a 1% chance of death. I had to [in the] middle of summer get completely cut open. I think I told my two closest friends, but I didn't really tell anyone. I think back, that's kind of weird that I didn't tell anyone.

That's a really tough age, though, for that to happen.

Yeah, it's a weird time in your life. You know when you’ve had heart surgery, and [the scar is] bright red, still, and puffy. Going back to school, I wasn't allowed to carry a backpack for a little bit, no textbooks. It's small stuff like that where I was like, Okay, I am a little different. I always felt very special with my parents. I’m Jewish, and my Hebrew name is Nesya. It means “miracle.” So I always felt very special. I wouldn't say it wasn't talked about. I was always told how special my heart was, but it was just those moments here and there when you realize, I'm different than my peers.

What was the recovery like after the valve replacement? 

It was intense. It was a six-week recovery. I couldn't sit up out of bed by myself. I couldn't shower by myself. I had a bell by my bed, so in the morning when I woke up, I'd ring the bell, my mom would come and help me sit up. To this day, I believe it affected my posture because I was 15, so depressed about it, that I think I slumped too much when I was healing. I was in the house for six weeks. I had friends stop by and hang out, which was really nice. And then slowly, you start walking on your own. You're doing a breathing machine [a spirometer]. It's like a little plastic thing where you breathe in, check how much your lungs are healing so that they can have bigger capacity, I guess. I remember breathing in it and being like, “Oh, I'm doing good.” And then my sister would do it, and it'd reach the top, and I was like, “Oh, I didn't realize other people have good lungs!” It was definitely tough. And then when school started, I remember my parents took me school shopping for new clothes because I wanted all crew neck [shirts]. I wanted everything to cover [the scar]. The scar was still healing. 

I remember one day at the first week or two of school, the top of the shirt went down a little bit, and my scar showed, and a guy said, “Ew.” I’ll always remember that because I was like, “Oh my God, how rude are you?” But people didn't know. I didn't tell anyone that I had heart surgery. It was definitely a tough recovery. 

I looked up some of your old clips from when you were on TV, and you wore clothing where you could see the scars sometimes. Can you talk about how you feel about your scar and how you got to that point? 

Sometimes I don't think anything of it, and then sometimes I am so annoyed. Growing up, I didn’t think anything of it. I would say, first heart surgery, I had a really great doctor. He did a really great scar. It was very small. Then in high school, [the new scar] finally healed, then you're more attuned to it. And then, eventually, normalcy hits in. You just forget about it. There was one instance in college where me and my friends were at a party, and my guy friend was talking to these new guys. And this guy was like, “Ew, what's on her chest?” That's when I became aware. Because no one ever asked me about it! I forget it's there because no one ever asked me about it, and so I was just like, no one sees it. And then there were moments like that where I was like, “Oh, people do see it.” I even asked my husband now, “What did you think when you first met me and you saw my scar? There’s no way you knew what it was right away.” He always is like, “I didn't think anything of it.” I was like, “Oh, okay.” 

So it varies based on what other people thought over the years. Sometimes there's certain cuts of shirts I just don't like. I don't have a smooth chest. I have a big scar down the middle. Or certain lengths of necklaces I can't wear, it hits weird on my scar. I think childhood was great where you just didn't notice it. And then as an adult you start noticing these things. But at the end of the day, it doesn't phase me. I don't know that I would say I love it. I'm very lucky that it's not big, and it's healed to be very much my skin color, and I don't mind it anymore. 

Can you tell me a little bit about how your parents handled your heart issues?

My mom is super good with doctors. That's kind of her forte, probably because of me, and also she has health problems too. She's always been someone who takes all the notes and everything. She kept all the files. I think, still to this day, she knows more about my heart than I do. So that was super helpful. My dad's very supportive, but he's kind of the quiet, emotional one where you think because he's more quiet that he is not feeling anything. But then the day of my second heart surgery, he was a wreck, bawling his eyes out. They both handle it in their own ways. My mom’s told me that if I was her first child, she wouldn't have had another child because it was so scary. My parents both worked, but my dad always was a little bit more of the breadwinner, in some ways, where my mom had to take care of us more and whatever our health problems were. There were times when it was just me and my mom at the doctor's office. But they were both very good about handling it. They must've handled a lot of the scary parts of it in private because they never made me feel scared.

Leah and her mom

How have your heart issues come up in romantic relationships? 

I guess there’s some point when you're dating someone where you start talking about it. It's kind of like on “The Bachelor,” where [contestants] start bringing up the hard parts of their life. My hard part of my life would be my heart. [My husband is] very good about asking about it and knowing if I'm not feeling well, but I can also tell it's still hard for him to understand sometimes. But I don't think it ever, in general, before him or with him, hindered any romantic connections. If it was going to bother someone, those weren't the guys that were going to date me anyway. A lot of people just assume you're fixed. You were born with a problem, you had the surgery. And then you start dating, and you’re like, “I actually probably will need another surgery down the line.” They’re like, “Really? But why?” That’s almost a benefit—they don’t see you as sick. 

I've had scares over the years while I've been with my husband, a new palpitation or I have chest tightness for too long and it scares me. He's more of an optimist. It's a good thing to have by your side, someone who just thinks, “No, it's all going to be alright.” That’s a great thing to have because I’m kind of the more fearful one about my heart. He has gone to heart doctor appointments with me before, so that's good. I just try to help him understand when I'm not feeling a certain way, or when I can't do this. If we do hot yoga, I might be really, really winded afterwards compared to him. He's just very understanding. It's second nature to him now.

Do you have any limitations nowadays?

I wouldn't say I have any limitations, other than simple ones. I was always told, “Don't go skydiving, don't drink energy drinks. Those sorts of things are not going to be good for your heart.” I don't know if my doctor would still say that to this day, but probably. So there's stuff that I just don't do. I will say, I've noticed over the past few years, now that my valve is 13 years old, shortness of breath more often or a little chest tightness more often. I had a new palpitation in December, so we upped my medicine to get rid of it.

When I'm having those days, as I'm sure you understand, where my chest hurts, you just want to curl up in bed. But you can't. The thing for me that I find that my body does as a reaction to chest tightness, either I try to crack my back—I think if I crack my back, “Oh, that'll open up the chest” or something—and then I also end up yawning a lot. That's a form of my body catching its breath. People are always like, “Oh, it's too early to yawn, quit yawning!” I'd be like, “God, I'm yawning because I can't breathe. I'm so sorry that this is uncomfortable for you.”

Do you say that to them? 

People I'm comfortable with? I have. People I'm not comfortable, I just laugh it off. If I'm around the same group of people a lot, I'll just tell 'em, “Can you see me yawning a lot? I'm not tired. I'm just catching my breath.”

I try to really appreciate my body on the days that are good. I do hot yoga, which can be pretty intense. I do workout classes. I can go on the treadmill for 30 minutes without stopping. I can't run. I can't catch my breath long enough to actually run consistently. But yesterday I did a walk around the neighborhood. I just try to appreciate my body because I know, in groups like Zipper Sisters, that there are people struggling. Their body may be diminishing before another surgery or whatever it is. So while I have all of the stuff good, I should really appreciate it.

That's so important. It's so easy to get down on your body. 

There's been many times I've been very mad at my body. I don't like the idea of, Well, there's people worse off in the world. I don't think that's necessarily healthy. It's moreso meeting your body where it's at and being thankful for what it can do. Because, who knows, in hopefully 10 years or more, I am going to eventually need another pulmonary valve replacement. I'm sure I won't feel very great around that time. So I'm trying to really appreciate the fact that I'm young and healthy and can move my body.

How does your CHD show up at work, especially when you were in such a public role as a broadcast reporter?

It kind of was like my superpower. It made me unique and different, and I was able to relate to families in a different way. Because of my position and people being interested in who I was because I was on TV, I was able to do stories about, not only my own heart condition, and spread awareness, but talk to other families, shine light on other types of congenital heart defects. If I'm doing a story about someone who's battling some sort of illness, I could sit there and talk to them in a way that I would understand some of the feelings behind what they were going through more. Also I was proud to show my scar because, like I said, it made me different. Being different is what makes you shine, especially in that industry. This is something that sets me apart and also makes me better at my job, being more empathetic and sympathetic towards many people who are going through things. 

I was proud to show my scar. I think the viewers loved it. I never had any negative or rude comments about it. People were always very interested. When it was my heart birthday, I would post about it, and they loved it. They were very supportive and always wishing me the best. I don't know if it was out of pity or support or whatever it was, I appreciated it. It always came in a very loving way. I also had viewers that were tough on me for other stories, so it's not like people just thought of me as the sick girl, and were just overly nice to me. Honestly, the scar was great because families would reach out. I still have my news TikTok account, and people still comment on photos or videos that I posted as an anchor. They're like, “Oh my God, I see your scar. My kid has this, and I'm terrified. I didn't know he would be able to live a normal life.” Everyone's heart disease is different, so I can't promise them what their child's future is going to look like, but it's really nice to be someone that makes other people feel hopeful.

What about in your current job at the Office of the State Attorney?

I'm behind the camera now. It's funny because, again, I don't think people notice it. If someone's going to notice it, they're going to be looking like they're looking at your chest. As a woman, that's rude and that's inappropriate. [laughs] A lot of people don't notice it simply because you're supposed to look people in their eyes. I was talking to my boss, who is the State Attorney, the other day. She was just casual. She gets to know you, and she's very sweet and open. We were talking to a coworker about [getting engaged]. [My boss said] “Are you ever interested in having kids?” in a very open, nice way. I was like, “Oh, maybe. I think so, but it really depends on my heart.” She was very interested and she's like, “I didn't know you had anything wrong!” 

I don't hide it. It's not like I'm only wearing high-neck tops to work. I'm going to wear what I want to wear. All women who have a scar down their chest have been in this situation, where you are talking to someone and their eyes keep going down. I'm like, I know I don't have a big enough bust that you're looking at my bust right now. You're looking at my scar! Which is totally fine because if you had a scar on your face, I'd be looking at your scar. I wish you would just ask instead of awkwardly thinking I'm not seeing your eyes dart down every two seconds.

I know exactly what you mean. I wish people would ask. I have a spiel that I have been giving my whole life about my scar that I can just rattle off, and then we never have to be awkward about it again. 

Let's say someone's like, “Oh, I've noticed you have a scar.” And you'd be like, “Oh yeah.” And you would point to it, and by pointing to it or talking about it, you're giving them that 20 seconds that their eyes and brain really wanted to look at it directly without being awkward about it. Because I'm like, I don't care. It's not ugly, it's just a line down my chest. Go ahead. Look at it. We're taught not to stare, so it's probably just out of people being polite. But it's just hilarious. I'm like, I see your eyes jotting down, and I don't have cleavage right now, so I know what you're looking at.

Right. I don't fault them for it. If this situation were flipped, honestly, I don't know that I would ask about it. I just wish it was different—we could just talk about it.

It's also understanding that people probably are just trying to be polite, and that's probably why they're not asking, and that's perfectly normal and fine.

Do you want kids? How does your heart condition interact with that decision? 

For me, kids is a very complicated thing. My mom was told, after my first heart surgery, “Yeah, she's probably not going to be able to have kids.” So my mom made that normal for me. I don't remember a sit-down conversation as a little child, obviously that would be traumatic, but I just knew—whether it was, maybe, doctors told me over the years. I remember having baby dolls and talking about adoption. That was so normal for me. My parents made it so normal and fun and cool, and it was exciting. Again, being different was exciting. 

At 15, I had my heart surgery. I do remember it being brought up pretty soon after my second heart surgery that they don't see why I couldn't have kids. They were like, “I don't see why not. Her heart's good. It'll obviously depend on when that happens.” That was weird because, again, I'm not in a spot in my life at 15 that I want kids. But there are girls growing up that their whole life, they want kids. I guess because of everything that happened before I was 15, I just never wanted any, or I just assumed I would adopt. After 15, I would think about it, but it was still something scary. And then year after year, when I’d go to my doctor, they would say, “Your valve looks good, are you interested in kids?” Eventually, when I got into my relationship with my husband, that was more a conversation that I was actually interested in to hear about. Again, they were like, “Well, I don't see why not. There's so many TOF patients who have kids and are very healthy. Of course, you would be high-risk because of your heart, we want to monitor you, but we really don't see why not.” 

My perspective on it has always been, when we have that feeling of, we want them now, it will depend if my cardiologist says if it's safe. Because if it's not, why would I do that to myself? I don't want something bad enough to hurt myself. My cardiologist recently told me that because of my heart, while it looks really good, having a child after the age of 30 is just harder on the body, in general. She's like, “If you want to have kids, I think you should have kids towards 30.” And I'm like, “I'm 30 in a year and a half.”

Leah and her husband at the Palace of Versailles

You better get on that!

I'm in this really confusing pipeline. I'm not going to do something because someone told me I have a deadline to do it. But then also, eventually, when I want a kid, will it be too late? I don't know. But I'm not going to do something to hurt my body because my health is my priority, not a future imaginary child. It's very confusing. It's a lot of these outside factors that other people in their late ’20s don't have to deal with. My friends don't understand at all.

Was that a conversation that you had to have with your husband?

Yeah. And he was totally cool. It was crazy. I don't know if it was just because we love each other or if it was me. Honestly, I really don't know if he ever had a yearning for kids or not either. I remember bringing it up, and he was like, “Yeah, if we can have them, cool, and if we can’t, we can’t.” It was not a big deal to him at all. 

You said that one thing that’s important to talk about is having space to feel angry and frustrated with your heart. 

You need someone in your life—for me, it's probably my mom—that you can go to and be like, “I am so done with this heart.” I'm so lucky that I feel like I'm really healthy, and I know there's people going through it in different ways. But I feel like we all need a place, a safe person that can either understand or is never going to say the wrong thing to us. And just be like, you're allowed to have those moments. Because there are days—especially in the last three years—where I'm freaking out, I have a panic attack because I think my valve must be done. Otherwise, why do I feel this way? You've got to have that space to be mad about it and upset about it, or depressed, or whatever feelings you have towards it. 

I know I told you earlier that when I'm walking, when I'm moving my body, I do try to have an awareness and mindfulness to say, Wow, I'm so thankful. But that's not all the time. That is literally at the end of the yoga class, and the yoga teacher tells you, “You have to say that,” and I'm like, “Oh, she's right. Someone's telling me to say that I'm trying my best.” But there are so many days where I'm like, Well, this is super annoying and stupid, and I'm pissed that I have to deal with this. As a TV reporter, you had to act like, “I'm super happy to share my story!” But also, I'm struggling. I'm carrying a 20-pound camera in 90-degree heat, and I'm having arrhythmia right now, and I'm over it. Accepting the fact that we're allowed to be mad at our bodies for the way they act, that's something I enjoy reading about. I don't want people to think I'm this overly positive person, like “I love my heart and I'm so blessed and blah, blah, blah.” We're allowed to be this.

So many of the stories we see are those stories of triumph. I survived, I had heart surgery and then I ran a marathon. Or they’re stories of tragedy, open heart surgeries and these really big things. Those stories are important, and I'm glad those stories are out there. But there are so many more nuances and shades of gray and little things that we live with, good and bad.

It's a chronic illness. It's something you live with. Your heart surgery, you didn't just heal it after six weeks and you're good and never thought about it again. There are people, including myself, where it is on your mind every single day.

When I have a good day, when I'm feeling good, I'm not having arrhythmia, I'm not having any of the other symptoms, I don't think about it. Honestly, probably that's a good thing. But those are few and far between. It is almost like addicts say, “We have to take it every day, one by one,” for recovery. It's almost like that for some people. Every day it's waking up and seeing how you feel and adjusting to that. I feel lucky that right now my heart is doing good, but the days when I have symptoms or the weeks when they persist, I'm so mad in my head. But then outwardly, I have to just keep going. I do have a positive personality, and I really enjoyed sharing who I was and my personality on TV. But it was hard to be like, “And this is me when I had heart surgery as a baby, and this is me now, blah, blah, blah.” I'm like, Ugh, this is not giving you the understanding that I still live with it. It's not one and done.

One hundred percent! You're preaching to the choir.

I figure the people like us, they understand it. But it's good to be told. I try to be a realist. With the public, you have to just state the facts and tell the story as best as you can. But no one except for our community is going to care about the nuances. They're really not. It's like when someone asks you how you're doing, if you're doing badly, be honest, sure. But you're not going to go into this deep of a conversation with any other person about your heart. They're just not going to care. Everyone has something going on with their lives. Everyone has some sort of struggle. But that's why it's important that when people either read this story or whenever I read your newsletters, and that person was able to articulate exactly how I'm feeling, I'm like, “Wow, thank you for saying that. I didn't realize other people felt that.” That's why it's so important to be honest about it. 

How do you balance appreciating your body while allowing yourself to be sad or angry? Leave a comment! Or, send me a note at theheartdialogues@substack.com.