How the co-founder of Zipper Sisters became a champion of the underdog

Lena Morsch went from "this dorky-looking, little blue girl” to an advocate for women with congenital heart disease.

Growing up in rural Illinois in the 1970s and ’80s, Lena Morsch was “this dorky-looking, little blue girl.” Bullied by classmates and misunderstood by teachers, she eventually learned to keep her heart condition a secret. That is, until a walk down a hospital hallway changed her outlook on her own story. 

Today, Lena is the co-founder of Zipper Sisters, a private Facebook group for more than 3,000 women with congenital heart disease (including me). She was born with a constellation of complex heart defects—double outlet right ventricle, transposition of the great arteries, a ventricular septal defect and pulmonary stenosis—that doctors initially diagnosed as an upper respiratory infection. 

At 4 months old, she had her first heart surgery, a pulmonary artery banding. Her second heart surgery, the summer after 9th grade, ended the cyanosis, a bluish tint to the skin and lips that some CHDers have. Her third heart surgery came in 2011, while she was working on a Master’s degree in literature. Lena never had a Fontan operation, a common procedure for kids with DORV and other ventricle problems (including me). Adult-congenital cardiologists have told her she is the longest survivor of this alternative surgical approach. She currently lives in Carbondale, Ill., where she works at a university. Here is her story.

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

I was born with an identical twin sister who doesn't have CHD. The hospital kept my sister and I two or three days longer because they thought I was jaundiced because my color was off. I didn't get diagnosed ’til I was 4 months old. I started turning blue. My sister was gaining weight, I wasn't able to swallow, I wouldn't be able to take my bottle. My mom kept taking me to the pediatrician, and they kept diagnosing it as an upper respiratory infection and giving me nose drops.

The day that I was diagnosed, my parents drove me to three different cities and three different states. And they finally got me to St. Louis Children's Hospital in the middle of the night. And that's when I was diagnosed with my major heart defect, not even minor ones. I was in congestive heart failure by the time I got to the ER. So I was pretty lucky to make it like I did. That's how my journey started. 

Did kids at school know that you had a different heart? Was it possible to hide? 

I was very blue. I was very cyanotic. I had the club fingers with the swollen nail beds, very skinny at that time. Smaller than my twin. I grew up in a rural school system, and they were not supportive of me and my family at all. It was an absolutely terrible experience. I was bullied incessantly. My poor sister had to get into so many fights standing up for me. You always pick the weakling to pick on if you're the bully because you're going to win. 

I didn't have any friends. I felt terrible going to school. I was sick and tired all the time. The teachers wouldn't accept the fact that I would get tired during the day if I wasn't sitting straight up in class at my desk or if I wasn't as active. I remember being cold all the time because I was on medicine, and a teacher made me take off my coat and go put it in my locker because she said I was too comfortable and that [the coat] was making me sleepy. So I froze the rest of the day. In retrospect, it's something that's taken me my whole life to heal from. Because I was an outwardly sick little girl—if you just looked at me, you kinda knew that. Feeling as bad as I did and being bullied and not having the support of the staff, for whatever reason, made it all the more difficult. And it was sad because that's a conversation that I never got to have with those teachers. It's something that definitely resonates with me now. I have this undying passion about defending the underdog.

That sounds really hard. For me it was very different because after my Fontan, I wasn't blue anymore. It was kind of the opposite where I knew that things were harder for me, but no one else did. No one knew that I was “sick.” Which was a blessing and a curse.

Did you ever feel like you're waiting for the other shoe to fall? Or was that something that you didn't experience until later in life?

I always had a sense of my own mortality. Not to be melodramatic!

The things that people don't understand, the things that you see in the hospital. [When I had my second surgery] the ICU just had curtains pulled between each bed. It was a big, open room. And you would hear the code blues, and you would hear the parents wailing when the child didn't make it. There were five kids that passed away in the ICU [while I was there].

When you wake up from surgery, you're kind of out of it. I would hear the code blue and I didn't know if it was for me or for somebody [else]. So that really left an impact on me. That whole scenario was just absolutely, I can't even put it into words. I know I definitely experienced post-traumatic stress after that and I didn't know what it was. And at the time, in the mid-1980s, the doctors didn’t know how to diagnose that. They were just like, “Oh, that's just part of recovery and you'll get over it.” But I had really violent dreams about my stitches coming apart, just really bloody dreams. I would wake up and I would still feel wet from the blood. 

I'm curious about how your parents dealt with all of this. What were they like?

They were very strong, awesome people. They didn't make my heart defect an issue. Whatever my sister had to do, I had to do. I had to do the same amount of chores and if they weren't comfortable with me going to a sleepover or whatever, they would just say we both couldn't go. It seemed like they were really strict, but they were good in the point where I didn't think my heart problem was an issue. I just thought, I guess I was blue. Like, you're born with brown eyes or whatever. I guess that's the decision that my parents made because they felt like if they had told me the truth of everything, that I would feel defeated. 

My dad was a special agent in the Illinois state police, so he had a talent of shining in really horrible, bad times. He always knew how to diffuse a situation. He always had a really good poker face. My mom was always, “Go in there and kick ass.” She wouldn’t say it that way, but she was very, “This isn't going to get you.” I was pretty lucky in that sense.

How does your CHD show up at work?

It's not been an issue. I did have to have my third open heart surgery in 2011. I had to leave [grad school] because I started having fainting spells. It got to the point where I was afraid I was going to face-plant on campus. My cardiologist was like, “You can't put this off.” I had to leave my assistantship, I had to leave grad school, I had to put my whole life on hold. And it was really hard because my mom was pretty sick then. I was trying to help take care of her, and she lived 70 miles away. 

But I've been pretty lucky. I've been able to work. The only thing that I was ever advised not to do was have children. When I was told that, I was like 12 years old. I got to the point where I didn't think I really wanted to have kids.

It sounds like I'm tooting my own horn, but I think that's why I'm such an active advocate because I've kind of walked the walk, but I've dodged all the bullets.

My very punk rock Zipper Sisters mug

How do you feel about your scars? Do you hide them? 

[After my surgery in 2011, my surgeon] helped me take a walk around the ICU. We were all going at a turtle's pace, you have your entourage behind you, somebody with a wheelchair in case you fall. I was going by every room looking at these sweet little babies and some kids were sitting up watching TV and they all were hooked up to everything. And I just wanted to hug every one of 'em. And I thought to myself, that's me. Why am I ashamed of that? This peace and comfort came over me. It was almost like everything happened to heal that.

I was just like, if I make it outta here, I'm going to be proud of my scar and not be ashamed anymore. My first surgery, I got picked up by my arm by a nurse that really didn't know how to pick up babies that had thoracotomies, and she ripped my stitches open, and it healed horribly. So a lot of things are connected to what happened and that hospital. The fact that I went back there and was able to find some kind of peace and resolve is really a massive miracle. So that's why I was like, I'm going to get outta here and I'm going to make a difference. 

That’s when you started Zipper Sisters?

I started that maybe about six months later. 

When you think about this whole journey that you've had, are there any benefits that you can see from it? 

I remember even just being a little girl, waking up and assessing how I felt. And I was always appreciative of feeling good and having energy—even 5 years old waking up like, “Oh, it's a good day.” People take those days for granted—that you wake up and you feel good and you don't have any aches and pains. It used to be really hard for me to express my feelings to people, but now I'm all like, “I love you, I love you so much!” It's made me really appreciative of time and people. It's made me really, really love the arts and always pursue that. 

This interview has been condensed and edited.