This is the first part in a blog series about Gabrielle Wanek, a twenty-three-year-old living with hypoplastic left heart syndrome.
I think a few of you may know me, or maybe have heard of me. I am Gabrielle Wanek, the daughter of Todd and Karen Wanek and I was born with HLHS. I was raised in Arcadia, Wisconsin, a tiny town with a tight knit community. Let’s just say that even if I wanted to get away with something, I never did.
My parents found out I had HLHS when my mom was about 7 months pregnant. This early diagnosis allowed them to find a doctor with the best success rate in the Norwood Procedure. (You have to remember that the Norwood Procedure was still being perfected, so many parents didn’t want to take any chances.) Through the assistance of the doctors at Mayo Clinic, we flew to Switzerland, where Dr. Norwood was practicing. For the next month, we lived in Switzerland until I was born. After which time we came home and they had to learn how to take care of not only my brother, who is three years older than me, but a child with a heart issue. It was a struggle, but raising kids is a big challenge on its own. Now, they had a whole new challenge to the mix, a challenge that very few people had experience with. My grandparents did what they could to help, coming over often to help my parents take care of us.
I grew up learning how to properly manage my situation. I had to learn how to do things differently than my brother, I couldn’t do all of the things he could. Don’t get me wrong, I was a very good child, but ultimately I didn’t like sitting on the sidelines for very long. As I grew older the more I could do, the more I could keep up with him. I proved that I was able exert myself more and more. I could go climb the tree out on our front lawn, join the swim team and go hiking with my family. I just had to learn to read the signs that my body was giving me and be aware when it was time to take a break and rest. As I reached high school, I became more independent. I knew I had to be home before my curfew, (10pm on weekdays) and take my medicine before I went to sleep and when I woke up. If I ran out of pills, I had to be the one to order them and pick them up. I had to deal with a low sodium diet, which is really hard to do and that caffeine maybe wasn’t the best thing for me. I joined different teams such as swim team, golf team and I got good grades. I would spend weekends with my friends, and I would go to the water park for the day. I would go to golf meets as a member of the varsity team, and could ride on roller coasters with my best friend. I learned to be responsible and was trusted to not overexert myself and to take care myself.
When I went off to college, I had to learn how to make friends that I wasn’t raised with. I had to be aware of each choice I made because my parents weren’t there any longer to fix my mistakes. I was just another college kid in everyone’s eyes and that was okay with me. The only people who knew about my challenge were a few of my professors who became aware of it, but they never said anything aloud and they would talk to me after class if needed. Most of my professors and friends don’t know that I am different. One time when I was talking to one of my professors and telling him about it, he looked me over and then told me, “you look and act no different than every other student that is here. You're still the only person that is able to come up with enough snark to come back at me, so don’t change.” His words help me deal with the complications of everyday life and it makes me smile. It's a strength that I didn’t think I needed.
Come back next week to read more from Gabrielle as she tells her story of living with hypoplastic left heart syndrome.
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.
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