Sydney McFall   |   August 14, 2019

Adventures of a HLHS Survivor — Meghan’s Story

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HLHS Survivor

Meghan Roswick was born in the hospital, left as a seemingly healthy baby, and returned back 7 days later due to odd breathing. The doctors “didn’t like the look of this baby” and thus began Meghan’s CHD journey. 

She was born with hypoplastic left heart syndrome (HLHS), a congenital heart defect (CHD) that means the left side of her heart was under-developed. Meghan’s parents were given three options — compassionate care (do nothing and wait for her to die), wait for a heart transplant or a set of experimental open-heart surgeries. The doctors urged compassionate care because they did not believe a “normal life” would be an option. Her parents chose the surgeries without a second thought and switched hospitals.

HLHS Survivor Hospital Search

Their options were limited as many hospitals did not perform the risky set of surgeries at the time. They landed on the hospital where Dr. Norwood, the man who invented the first surgery in the sequence, was working. Yes, that is how new and experimental the first open-heart surgery Meghan would undergo was. 

She had four open heart surgeries done between 11 days and 2 and a half years old. Since then, she has had multiple cardiac catheterizations and testing done. The likelihood of more medical interventions and possibly even transplant later in life is increasing everyday. 

However, she refuses to let that stop her. She is alive and is not going to forget it. “I have the blessing and curse of having the constant reminder that life is very short. Anything can change in an instant and there is nothing you can do about it except to know that you have done everything you can to make the most out of your life. I have been in the trauma bay multiple times whether it be from a stroke or being in Afib for hours and having to have that conversation with myself.” 

Pushing Limits

Meghan hanging upside down from the tree

Pushing the limits is something Meghan has done from a young age. She developed a love of gymnastics and was determined not to let her HLHS get in the way. Meghan worked her way up to training in one of the top gyms in the country, putting in over 20 hours a week. She was even selected for a photoshoot for The New Yorker showing the physical strength of gymnasts. They didn’t know she had HLHS and a photo of her hanging upside down in a tree actually made the magazine! “Gymnastics made a huge impact on my life. The gym became my way to cope with the anxiety and scary thoughts like what will happen to me in the future. It [gave] me the confidence to feel like I can accomplish anything.” 

HLHS survivor sky diver

Meghan has packed all sorts of adventures and accomplishments in her 28 years. She has run a 15k, skydived, hiked through national parks and even fulfilled her dream of moving to California with her husband.

Understanding Limits

Though adventure is always calling her, she realizes she has limits. She takes practical measures to ensure she is doing okay. “I am fortunate that my husband is a critical care nurse so I always feel like I have a layer of security, however the first thing I always do is locate the nearest hospital.” She also takes breaks especially while hiking in heat or high elevation, lets people around her know of her HLHS and what to do if something happens and practices positive self talk. 

Meghan (HLHS Survivor) and husband

She has fought hard to live the life she desires but still has limits due to HLHS. “Life with chronic illness means a lot of making lemonade out of lemons. On my worst days, I can always reflect on the amazing adventures I have been on. Am I happy with everything I have done? I am still trying to figure that out if I will ever get a “yes” and be satisfied but that’s why I love adventures.” She is squeezing every drop of life out of those lemons and making a life she is proud of.

Miracle Meghan

Meghan, the smart, strong and beautiful HLHS survivor, is a miracle to say the least. She is faced with her own mortality everyday when she gets dressed and sees her scar. “Invisible illness impacts the lives of so many people we see everyday. Everyone has a story and their own battles. Always go out of your way to be kind to someone because that may  be the spark they need to get through a bad day.” The invisibility of CHD is something we at Project Heart are working to expose. Exposure means awareness, awareness means funding, funding means research and research means a CURE. And that’s exactly what we’re going to do — cure CHD. 

You can follow along with Meghan and her adventures through her Facebook page.

Want to learn more about HLHS? Click learn more!

  1. Kim   |   August 14, 2019

    I am a mom to a HLHS son, Tyler, who lived to be just a month old. He passed after the first of the norwood procedures 25 years ago. It never leaves you. 🙁 I have followed Meghan on facebook for years now. She fills my own heart up with her love and zest for life and reminds us all not to take a moment for granted! We should all be so blessed to live such a full life and to have such a HUGE heart to be able to share her journey with the world. Thank you, Meghan. I wish you nothing but a LONG LIFE of health and happiness!

    • Mascha   |   August 14, 2019

      I’m sorry for your loss Kim, I think it helps us all to follow Meghan’s experiences to understand better what kids with heart disease and their families go through. We need more solutions!

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