As the parent of a child with a Congenital Heart Defect, I constantly wonder what the future holds for my eight month old daughter Mila, diagnosed with Hypoplastic Left Heart Syndrome (HLHS). I not only wonder about her future health, but also about her quality of life way into adulthood. It was therefore my absolute pleasure to have encountered our interviewee Meagan Broucek, who has been kind enough to share her story.
Meagan is a beautiful and vibrant 24 year old originally from Saline, Michigan who is currently living and thriving with HLHS. She is one of three children and holds a Bachelors Degree in Psychology from Trine University in Indiana. Meagan is currently a photographer who owns her own business – Meagan B. Photograpgy https://www.facebook.com/MeaganBPhoto. See part one of two of her very candid Pink Bow Diaries interview below, which demonstrates that despite the bumps she’s encountered in her life’s path to date, she has prevailed, triumphed and is now living her life happily on her own terms!
1. When did you first become aware of your HLHS diagnosis and how did you handle it?
I first became aware after my Mother and I attended an event for children with congenital heart problems when I was 5 years old (1995). All these parents were coming up to me and my mother and asking her all these questions and wanting to see my scar. I think that is when I started to become ashamed of my scar because so many people wanted to see it. I then became very shy about it, and scared what people would think of me. When I had my surgeries, they put tubes down my throat, which hit my vocal cords, so my voice sounds like I’m sick all the time. So that added to me being shy. I handled it by not making a lot of friends and keeping to myself.
2. Describe how your heart condition has affected your relationships: the dynamics in your family and external relationships.
I was most comfortable with my family, since my older sister and parents were at the hospital when it all happened and know every detail. My parents worried about me all the time until middle school. They wanted to make sure I wasn’t pushing myself too hard. My older and younger sisters are great, my older sister was the first one to hold me after I was born, and also she named me. My younger sister didn’t know I had HLHS until she was a little older. I knew I was different because I couldn’t play as rough as them and I couldn’t play all the cool sports like my sisters did.
I did play softball for 12 years and soccer for 6. I wanted to try lacrosse and basketball, but they were too much for my heart. I only had a few friends growing up and I am still really good friends with them. I only told a few people about my HLHS because I was so worried about what people would think. Yes, people judge and make fun, and that is what made me so shy and made me not want to tell a lot of people. Since I was so shy through school, I didn’t have many relationships. I did date and meet some nice people, but then I met a really great guy who understands that I have HLHS and loves me for who I am.
3. Describe the main differences between living with HLHS as a small child, teenager and now as a young adult.
Child: As a child I didn’t fully understand what was going on with me. I can’t really explain how I felt back then because I don’t really remember it all. I only remember stories I was told and photos I have seen.
Teenager: When I was a teenager, I played softball, had friends that I trusted, and was doing very well in school. I was in a lot of groups and met a lot of people, but I still didn’t tell many people about my HLHS.
Young Adult: Now that I am an adult and have my own life, everything is different. I am living with the guy of my dreams, have a full time job, my own photography business and my scar is just part me. If people ask, I just tell them what happened, I don’t try to hide it anymore. It took time, but I grew into my scar and realized it was who I am, not what defined me.
4. What have been the main challenges about living with HLHS in your experience?
Honestly, other people. There are people in this world who don’t care about others and say whatever is on their mind and it can hurt people. There were times I went home and cried because of what people have said to me, or how they acted because I was different. People can be cruel and curious. While in school, almost everyday I was asked “What’s wrong with your voice,” “Why do you sound weird?” and “you had heart surgery and lived?”
I got used to it, but it was the most annoying thing at the same time. In middle school and high school I was made fun of for being so different and having a “weird” voice. I also was usually asked “are you sick?” or people would mimic my voice, which was just rude. I always questioned how people were so mean to people who were different than them. I thought about it, and realized, people just want to know the unknown and make fun of what is different.
5. What are some of the positives about living with HLHS in your experience?
There are many positives! You have an amazing story to tell others if they want to hear it. You are different and can really show others how amazing you really are. This one is funny, but as a child I used it to get out of things I didn’t want to do. For example, I didn’t want to go to school one day and I told my mom “I don’t feel good, my heart hurts” which was what I said when I had some slight chest pain. My mother let me stay home and watch movies all day, it was great! You have a pretty badass scar to show people. Having HLHS has been a love hate relationship with myself, but now that I am older, I love it and I just want to help others like me.
6. How has HLHS impacted your spirituality and your general outlook on life?
HLHS has changed the way I look at things in life. I try to see the good in everyone and everything, even if they are different than me. I don’t judge others, because I don’t want people to judge me. Having HLHS has made me want to help others more and more. Helping people just makes me happy and puts a huge smile on my face. I also don’t question others about their scars, if they want to share it, then they will. I don’t want to force people to talk about something they don’t want to.
7. Describe what your social life is like and what you do for fun, living with HLHS.
I am very social now that I am a young adult. I try to meet new people and like talking to different people. I love photography, so I will go out and just take photos. I played softball for the longest time, and love just walking or running on the beach. I can do anything like a person who doesn’t have HLHS, but I need to know my limits on how much my body can take.
8. What advice would you give to parents with infants and small children who have HLHS?
• Be patient
• Don’t worry too much
• Research everything: your doctor, the surgeon and about HLHS
• Trust your gut
• Talk to older people living with HLHS
• Let your child live their life!
Please visit Meagan’s page at https://www.facebook.com/MeaganB11 to follow her story.