How a rare heart defect changed one woman's idea of her body
How a rare heart defect changed one woman's idea of her body
Born with Shone’s complex, Mallory Stanek discusses the pressure to be thin and healthy with a heart condition, and how she moved forward from sexual assault.
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.
This interview deals with sexual assault and eating disorders. If it’s not the right time for you to read about that, feel free to skip this one.
When you grow up with a heart condition, your body is prodded and scrutinized by strangers from an early age. It can start to feel like it’s not your own, not under your control, not enough.
For Mallory Stanek, this has manifested in part as an unhealthy drive to lose weight and a sense that she couldn’t say no to unwanted sexual advances. She was born with Shone’s complex, a rare congenital heart condition also known as Shone’s syndrome, where people have at least three defects that affect blood flow in the left side of the heart. At 18 months, she had surgery to repair coarctation of the aorta, a heart defect where the aorta is narrower than usual. She got her mitral valve replaced with a mechanical valve at 9 years old, then had another valve replacement at 20.
Though she started out as a teacher, she went back to school to study education in human sexuality studies. Now 31, she lives in Philadelphia and works as a domestic violence counselor, including training medical professionals how to screen for relationship abuse and sexual violence. She is “particularly interested in how growing up with CHD, or other chronic illness, affects one’s sense of bodily autonomy and can lead to higher risks of victimization.” Mallory said she is a survivor of three sexual assaults, the earliest when she was 16. She said she has also struggled with disordered eating. Both issues have intersected with her heart condition in surprising—but somehow also painfully familiar—ways.
Read on to hear her story.
Shone’s accounts for about 1% of CHDs. What has it been like living with this particular heart condition?
I don't know if they diagnosed me with Shone’s complex at birth, but I know that once I got a little older and I asked my doctor the name of my condition, that's what they told me. I actually work in a hospital now, and there are child life specialists and more education programs to help kids understand their conditions. But that definitely wasn't around, at least not in my children's hospital, growing up. I feel like as an adult, I've had to do a lot of my own research. Almost every time that I go to a new doctor, they don't know what Shone’s complex is and have to go look it up. Oftentimes they leave the room, come back, and they have this worried look on their face. [laughs] I didn't realize how rare it was until I started doing my own research.
What was your childhood like?
Growing up, my parents always told me that I can do anything everyone else can. I'm just like everyone else. I know that came from a really good place, but as I've grown up, I know that that's not true. I can't do everything everyone else can. I think I held myself to a really high expectation. In gym class, I had such a hard time doing anything that required a lot of endurance. I would get very tired easily. I was also very, very small. And then once I had my valve replacement and started having my growth spurt and had been a little bit behind in being able to develop that endurance, I tried to get into sports and running and things like that. I always did dance, and that was what I stuck with growing up. Because [I take] anticoagulants, I can't play contact sports, with the increased risk of bleeding.
I also remember having to miss a lot of school. I was never, never going to be able to get perfect attendance. That was just not even an achievable goal for me. Aside from having to be taken out of school for the cardiology visit that can sometimes take a whole day, and then getting blood draws for my INR1, I also got sick a lot easier. I had pneumonia seven times [in first grade]. At my mom's house, I have a bunch of cards stored up from elementary school friends writing me notes when I was in the hospital.
How did your friends react?
I had friends that came to visit me in the hospital when I had my first valve replacement when I was 9. Even though I had my IVs in and potentially some sort of oxygen cannula in my nose, I still wanted to play and visit with them. I don't know if this is something that a lot of hospitals do, but I got a heart pillow for that surgery. I had all of my nurses, all my doctors, anyone who came to visit me, all signed that pillow. I definitely had a lot of family and friends support. I remember coming home with so many stuffed animals and putting them all in the bed with me. I'm sure a week later, I think my mom's like, “Okay, you can donate some of these, you can pick your favorite.” [laughs]
How does your heart condition impact your life today, if at all?
It definitely impacts me. I still check my INR, usually about once a month. I have a machine that I can check it at home. I see my cardiologist every six months. I still don't play any contact sports or anything that could potentially lead to a blunt trauma. I have my scar.
Once I became an adult, I noticed people started thinking of my heart condition differently and lumping it in with heart disease or heart failure, which feels very stigmatizing. Because this wasn't something that I brought upon myself with poor eating or smoking or anything like that. It was something I was born with. When I had that newer scar [from my second valve replacement] that was very much still healing compared to the one from 2001, I remember getting a lot of weird looks or comments. Even people close to my family, like at church and neighbors, who may not know that I had a heart condition. Even now if I were to go to the ER for shortness of breath, worried about Covid or something, my chart will say “heart failure.” It always seems like such an extreme term. I don't feel like my heart is failing, but I know that if the valve was not functioning, then it would.
Why do you think the term “heart failure” affects you that way?
I was born with a congenital heart defect rather than developing something over time, later in life, it doesn't feel like it was in my control. It's not even necessarily the label, it’s the assumptions that go along with that label.
This is something that's not your fault, but you feel like you're being blamed for it anyway.
Right. I have to try to prove harder that I'm healthier in other ways.
There's a thing called healthism, which is this idea that you're morally superior if you are healthy, and if you're not taking actions to be “healthy,” then you're somehow a problem. The reality is that health is made up of hundreds of different factors, many of which are not in our control. Even for people with acquired heart disease, a lot of that is genetic. It's about the resources people have, the access to food and exercise and time and money and health insurance. It's really hard for people to have so much pressure to be “healthy,” whatever that means, and to feel like you're somehow less than if you're not healthy.
When I was growing up, before I had my mitral valve replacement, my growth was stunted. My family's fairly tall. Because my heart wasn't functioning well until age 9, I really didn't start growing a lot until then. But I also started gaining weight at a higher rate. I always was slightly closer to the higher end of the BMI, but was never overweight growing up. But I was made to feel that I was. And because people were worried about my heart in the future, that pressure as an adolescent and young teenager, led to a lot of unhealthy dieting. Which then made it harder once I was an adult to sustain healthy eating habits. That’s something that I've had to work on as an adult. I never went to a specialist for it, but I think that I had an eating disorder.
I remember in high school, I would be dropped off at the gym every day that I didn't have dance team practice after school. My senior year, I wasn't allowed to see my boyfriend unless I went to Weight Watchers meetings with my dad. I remember going to those meetings, and they have scales you step on before the meeting. And they would be like, “Oh, you lost a pound since last week!” and be happy about it. And I would know in my head that I didn't eat that day. It reinforced some of those negative habits. Or being at school or at church and having someone tell me like, “Oh, you look so great! Did you lose weight?” Again, knowing, I probably did so in an unhealthy way. It can affect self-esteem. A couple years ago, I went and looked back through a bunch of pictures, and I definitely had body dysmorphia because I saw pictures of myself when I was 15, 16, 17, and I couldn't believe that that's how I looked. I was captain of the dance team. Just because I don't like running and I was never able to do that very, very well, I still was an active person.
A lot of those factors bundled in together and affected me in adulthood when I was able to grocery shop on my own and be in charge of my own schedule. Not being able to stick to healthy routines when it comes to diet and exercise. I was always doing the extreme dieting and then binge eating and then extreme dieting and binge eating cycle.
Thank you for sharing that with me. I'm so sorry you had to go through that. I have been through similar things in my life and finally got out of it entirely a few years ago. Obviously there's so much pressure across society to be thin no matter who you are. For me, the heart defect and surgery played into it because I felt like my body couldn't do these things or was deficient in some way because of my heart, and that I could make up for that with being thin. It's something that people don't talk about a lot, but you're not the first person that I've talked to with a heart condition and an eating disorder.
When I was having my second valve replacement, they were worried about weight gain and they wanted to try and get a bigger valve in. They kind of sold it to me as, “If you want to be able to get pregnant and carry a pregnancy, you will need a bigger valve.” I was 19 at the time, and I felt like I had to make this huge life decision of, “Do I get a second surgery now so that I can have the possibility of having kids in the future?” I was finishing my sophomore year of college, so that was definitely not something I was thinking about anywhere in the near future.
Eventually I found out, partly from my own research and then finally from when my doctor retired and I saw a new doctor and got a straight answer, that my heart condition is one of the few that he highly recommends against pregnancy. It could be fatal. Knowing that, I felt a little jaded about the way that I was educated about the second surgery, because it was my choice. I didn't need to get it right then. I passed my stress test with flying colors before the surgery, and my surgeon was even confused why I was there. The valve that they put in was only two millimeters bigger than the one I had when I was 9. I sometimes still wonder about that, if I didn't have that surgery, then how I'd be doing now. I feel like I was lied to by doctors and my parents about the pregnancy thing.
Do you want kids?
When I was younger, I definitely wanted to be a mom. You know how people imagine their weddings. I didn't imagine my wedding. I imagined how I would be as a mom. I had a younger brother and I remember helping take care of him a lot. My first job was babysitting and working as a summer camp counselor, and then I went to school for education. So always, always loved kids. When I started to do some of my own research, I had a feeling that it would be a very difficult process. Until I finally got a straight answer from my doctor—that's when I was 25—that affected the way I felt about myself in relationships. Knowing I wouldn't be able to offer biological kids. It's something I’ve come to terms with. I’m really passionate about foster care. I don't have a time limit to worry about since I'm not having my own biological kids. That's something that I plan to do once I'm ready.
When you reached out, you talked about your work in sexual violence prevention and how your CHD has impacted how you thought about that work. Can you tell me more about that?
When I was starting to date and have relationships in high school—I didn't realize this until later—I had a harder time telling people no if I wasn't comfortable with things. I realized later, when I was in the hospital once as an adult, I’ve got somebody putting an IV on one arm, someone doing blood pressure on the other arm, someone's listening to my heart with a stethoscope, I’ve got people all around me, and I'm just laying there like a rag doll. I grew up trusting doctors are the experts. They know what's best. That idea, reinforced over time, affected the way I thought of my own body and autonomy over my own body. Especially with people I trust or people of authority, I had a harder time expressing discomfort with things.
I remember there was a boy who asked me out. I said no. But his mom came up to me and made me feel bad about it. She said he just needed a good influence. “You can at least be his friend.” I felt obligated to do what she said. I spent time with this person, and when we were planning it, I made sure his family was going to be there. It was not a date. But then on the drive home, he pulled over and tried to do things that I was not comfortable with. I remember my phone was dead at the time, and it was dark out, and I didn't know my way home, so I couldn't just leave the car. I had to try and fight him off, but then still allow something to be able to get him to still drive me home. That was the first time I was sexually assaulted. It's happened four times since then. That has affected me a lot.
The first time that a doctor ever asked my consent to touch me was a therapist. When she asked me that, I had this immediate comfortability and this wave of like, “Oh my gosh.” No doctor has ever said that. And I wonder how much that would have changed things if there was more education and conversation of that environment of consent. Obviously they're doing what they need to do to save my life, but at the same time, if it's not an emergency, there can still be that level of trust and communication there.
As a [high school] teacher, I was noticing a lot of gender-based violence and bullying and teen dating violence. With my own experience and seeing it in schools, I started researching comprehensive sex education and what that looked like. A lot of that is coming from nonprofits who do violence prevention work. So I went back and got my Master's in education for human sexuality studies. What I went through inspired me to turn that into my work, so that other folks don't have to experience that.
That's powerful that you could turn what is a difficult experience into something beneficial. It's interesting to have that parallel between the doctors and thinking about consent and bodily autonomy. It’s hard because doctors are supposed to be helping you, but it's also possible to feel violated by doctors. Not because of any malicious intent but because you're a kid or you're helpless, and you can't really consent.
I've had to tell doctors that I can't have more than one thing happening to me at the same time. If there's a lot of people in the room and someone's taking my blood, someone else is doing this on the other side, that can trigger my PTSD. I've had to come to an understanding that I have that, what my triggers are, and then be able to communicate that to my doctors. That sort of thing doesn't really happen unless you're in the ER or something. For normal doctor's visits, it's usually just one person in the room at a time. But that's definitely been something that I've had to advocate for.
Do you have any advice for how to advocate for yourself in that way?
Having a sense of what your own triggers are is a good thing. And then being able to communicate that. Finding a doctor that you're comfortable with and that you trust is a huge part of it. That's not so easy. Not everyone has the time to shop around for doctors. But that makes a huge difference. Someone who, when you explain what's going on, they believe you. I still struggle with advocating for myself. Remembering that you are the expert of your own body is the most important thing. And then having doctors that listen to you and that you trust.
What else is important to talk about?
Every so often, I'll find out something that is a symptom that I have as a result of either my heart condition or trauma. An example I have is, I remember turning to my husband and being like, “You remember where part of your hand goes numb?” And he's like, “What?” I was like, “Yeah, when your pinky goes numb or part of your palm goes numb.” And he's like, “No! That’s not normal.” And I looked it up, and it's nerve damage. And I'm like, what can cause nerve damage? Well, IVs in your hand can. With all of the times I've been pricked for either getting blood draws or having IVs, I guess that has caused slight nerve damage in my hand, so sometimes parts of my hands go numb. I thought that just happened. Like, you know, your leg falls asleep, your hand goes numb. I thought that was a normal thing that happened to everyone. It’s things like that. I’m slowly learning, Oh no, this is something that I've always experienced, but everyone else does not experience.
Interview has been condensed and edited.
How has your heart condition affected the way you think about your body? Tap the comment button to join the conversation.
A test to measure how quickly your blood forms a clot.
For me having zero control of my congenital heart defect and all its life implications from surgeries to meds to lifestyle limits, I am passionate about the things I CAN control, like my diet, habits, friendships & lifestyle choices! I'm not a victim, I'm a survivor and cherish every moment and try not to sweat the small stuff. A day not in the ICU
Is a good day!!!