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“Half a Heart. Full Steam : Pushing Boundaries”, by Meghan Roswick

September 9, 2013

“Hi! My name is Meghan Roswick and I was born with a congenital heart defect called, Hypoplastic Left Heart Syndrome.

Hypoplastic Left Heart Syndrome, or HLHS is a heart defect where the left side of the heart is so underdeveloped it practically does not exist, nor function.

Parents today often find out during pregnancy if their child has HLHS – yet at the time I was born, my parents were not aware of my diagnosis.

On October 7th, 1991, I was born weighing 8lbs 12oz. Doctors had given me a clean bill of health and sent me home just a few days later.

At 7 days old, my mother noticed that I seemed to be breathing funny and took me to the emergency room. The nurse immediately said, “I don’t like the looks of this baby” and whisked me away. They didn’t have the equipment at the small town hospital I was at to see what exactly was wrong with me. So, I was taken to another hospital where, ultimately, they diagnosed me with Hypoplastic Left Heart Syndrome.

The diagnosis was very grim and the doctors told my parents there were three options available: a heart transplant, a three-step procedure, or to let nature take its course through compassionate care. Doctors told my parents that if it was their child, they would let nature take its course because it would be near impossible for me to ever have any sort of a normal life.

There were not enough hearts for a transplant and the three-step procedure was still considered experimental (and to their knowledge all who had undergone operation, were not doing well).

My parents took a night to discuss the options with the family and then decided to go ahead with the three-step procedure and move me to Philadelphia Children’s Hospital where the inventor of the main procedure was stationed.

At 9 days of age, I had my first open heart surgery, my second at 6 months, and my third at 13 months. I was doing much better than doctors anticipated but then I went into congestive heart failure once again and needed a fourth operation.

After that fourth operation my future seemed to be looking bright. Doctors were telling my parents to channel my energies into the arts because they figured I would never be able to do sports let alone walk a block without oxygen.

About a year after my last surgery – when I was 3.5 years old – I wanted to try gymnastics. My parents were wary but consulted my surgeon and he said that I would set my own limits.

I instantly fell in love with the sport and to everyones surprise I was doing well and keeping up for the most part. I continued to do well (except keeping up during cardio conditioning was very difficult for me). Most peoples hearts double, triple and quadruple the amount of work it can do, while mine can only double. That means less oxygen in my blood and to my muscles, ultimately causing me tire much more easily.

Doctors had no clue how much stress exercising would put on my heart, nor did they know how I was even able to bring myself to exercise.

They told my parents, “what she is doing is either the reason she is doing so well or it is going to kill her.”

I struggled tremendously with my body becoming exhausted so quickly, but I kept pushing and building up my strength to the point where applying my skills would be as effortless as possible.

I would turn purple after every floor routine and cardio exercise, but would quickly regain my pink color after some rest. I struggled between pushing myself and letting my body rest when it needed to. I ultimately broke my body down and became too injured to continue (not heart related).

It took a year to find my niche again in the world of adaptive sports but I discovered skiing and the freedom that comes along with it.

On a side note, I’m also a fan of Make A Hero’s adaptive ski film ‘The Movement and got in touch with them after watching the movie and finding out that Bethany Hamilton is working with them in their next adaptive water sports film ‘The Current’ – eventually we set up this guest blog post you’re reading today!

After successfully taking up sports as I’ve progressed through life, I’ve come to realize that I want to set an example for younger kids with similar “defects” to inspire them to believe that they have the possibility of overcoming predisposed limits.

As frustrating as it can be to realize that you do, in fact, have limits – it is always more rewarding to try find out first hand just where those limits are, instead of being immobilized by the thought of them.

I was a gymnast for 14 years. I played soccer, track, and ski-raced in high school. As a young adult, I recently ran my first 15k and am planning on running my first half marathon later this year! I hike up in the mountains at a high elevation. I just recently went skydiving for the first time. Now I am an avid adventurer! My next goal is to learn how to surf. I will never stop trying new things (and I will always keep people posted on my HLHS community Facebook page)!

It would be easy for me to get trapped in a world of constant worry over the uncertainty of my life. Participating in sports and activities is my way of escaping, breaking past limitation, and feeling as though I conquered a small battle in a life long fight.

HLHS is a congenital heart defect, which doctors have little known research on in regards to quality of life after experimental surgery. Testing the boundaries of what doctors believed possible for me has signified a personal challenge, with opportunities to experience freedom and exhilaration, along the way!

For anyone who has felt trapped by the limits that medical science has already set for them, I hope to represent an example of a movement, beyond self-emposed boundaries to a place of freedom and hope for the future.”

“Strength does not come from physical capacity. It comes from an indomitable will.” Ghandi

How have Meghan’s experiences inspired you?

Thank you for commenting below!


*** Make A Hero is a registered 501(c)3, non-profit, creating adaptive sports films and media content, inspiring individuals with disabilities to enjoy the freedom of participation in adaptive sports & recreation.

Please help us spread the word about Meghan Roswick, the Make A Hero Cast, and everyday heroes, by sharing this post through the social media buttons on this page, learning how you can Make A Herosubscribing to The HERO Newsletter, and / or giving a generous monetary donation.  Thank you! ***

Discussion - 27 Comments

  • Sarah Jun 19, 2015 

    Meghan, you remind me so much of my 8 year old son. he too was born with HLHS. His doctors in the hospital would tell us that e would be very lethargic, unable to run for long periods of time and not able to play sports. He is the exact opposite of what the doctors prepared us for. He, just like you always pushes himself and its a true competitor. Your story really touched home as I can see a lot of my son in you.
    Thank you for sharing your story and it goes to show that even a heart kid can be an athlete and push the limits.

    Reply
  • Kathy Barrett Haase Jun 19, 2015 

    Meghan you are an inspiration and you give so much hope to everyone…Thank you so much for sharing your story…

    Reply
  • patricia echeverri Apr 25, 2015 

    “Half a heart. Full steam: pushing boundaries”…What a beautiful quote!!!
    I have a 16 year old son (HLHS). It’s been difficult.
    Thank you for sharing your motivational story.

    Reply
  • Brandi Aug 10, 2014 

    The buckskin pedal band contract and strain near busting from your continuous pressure
    bearing down to them. Should you be fresh in getting products online,
    I simply want one to know that you’ve to-go for a check-up.

    Reply
  • Sadie Jun 30, 2014 

    Thank you for sharing! What an inspiration! You give so much hope to us parents with children that have HLHS. I will think of your story often when I find myself discouraged.

    Reply
  • Leona Spence May 12, 2014 

    Thank you Meghan, what a gift of inspiration you have given our family especially my daughter, 12 years old with HRHS. You have inspired us all the way in little old New Zealand, to look forward to life ahead! Thank you!! x

    Reply
  • Kate McDonald May 11, 2014 

    We also just saw your story on 60 minutes in Australia, thankyou so much for sharing. Our beautiful daughter, Abigail is four years old with HLHS and has just had her Fontan completion two months ago! She is doing really well, and it was so reassuring and has given us so much hope to see and hear your story tonight! I laughed when you said all HLHS kids have that spirited, determined personality because that is exactly our Abigail! Your strength and maturity is a true inspiration to us and i can only hope that our daughter grows up with a similiar outlook on life! Keep being an amazing inspiration to the world xo

    Reply
  • Faye Sutton May 11, 2014 

    Megan – I just saw you on the Australian version of 60 Minutes.
    You are an incredible young woman – keep living life to the fullest.
    My nephew was born with HLHS 21 years ago. Sadly he passed away
    at just 4 weeks of age. His family often wonder what he would be like now, what would he be doing.
    My hope is that he would be living life to the fullest – like you.
    Thank you for sharing your story & for inspiring other young people with
    heart conditions & giving their parents hope.

    Reply
  • erica beckett Feb 06, 2014 

    my son tylor seen ur post on facebook with me, I showed him ur story,.. he along like u, has hypoplastic left heart syndrome, he had his surgeries at Cleveland clinic,.. reading ur story today really brought up some painful moments in my Iife, but also brought up some great times, like u n ur parents, my husband n I were told our son tylor is a healthy baby when pregant’ didn’t find out til 2 hours after birth, he was 8 lbs. 8.9 oz’s, he had the norwood surgery at 4 days old” n the glenn surgery at 5 1\2 months old, n the faintain surgery at 4 1\2 years old”… u n my son tylor” n all other children with this heart defect r true” inspiration’s!!!!!… to all people.. u give that much more, hope seeing n reading ur story, n seeing u reach ur goals, for my son tylor”… God” made precious children,.. like u” n my son, my hero!!!.. thank u” n god” bless” u n ur family”..

    Reply
  • Barb sopotyk Feb 06, 2014 

    Meghan you are such an inspiration to those in a similar situation my granddaughter was born with HLHS is 8 months old and doing great. Her parents were given those options and like your parents went with the 3 procedures . Raven has had the first 2 operations and is we are so happy to know she will have a normal life thank. youMeghan you are a true hero and thank you for sharing your story

    Reply
  • Taylor Calame Dec 01, 2013 

    Meghan, thanks for sharing your story! My little one was diagnosed postnatally with a single ventricle CHD and is having his Glenn a week from tomorrow! It is so encouraging to hear your story of strength and determination. My prayer is that like you, he will not accept the limits others place on him…that he will thrive and live fully! Thanks for sharing your story.

    Reply
  • Amanda Nov 20, 2013 

    Megan, you truly give me hope to pass on to my son. He was born with HLHS that was also not diagnosed until we had him home. His first surgery was at 13 days and he just had his second back in September @ around 6 months. Currently, he is thriving and I’ll always worry about him but it’s good to know that through the advances in medicine, these kids coming up can lead full lives!! Thank you so much for being such an inspiration to us all!!!

    Reply
  • Janet McGuire Oct 17, 2013 

    Megan: I have a 7 week old grandson who was diagnosed with HLHS at 6 days old. He has had his first surgery at 13 days old . He will have the other 2 in the near future . I just wanted to say the you are a true inspiration to us and thank you so much for allowing us to share your story with you. I know our little guy has battles ahead of him but he has a strong and loving family in front of him. Knowing that people, like him are out there and doing so well is such a help for us. Thank you Megan……. Take care…….. Janet

    Reply
  • Steve Neish Sep 30, 2013 

    Meghan, Thank you for helping us to remember what’s important. Steve

    Reply
  • Phil Sep 27, 2013 

    My 9-month son was diagnosed with a heart condition shortly after he was born. He has had one surgery and we hope his last. Your story gives me hope that he will be able to actively enjoy sports as he grows up.

    Reply
  • Betsy Castillo Sep 25, 2013 

    Thank you very much for sharing your encouraging story. Your story and life experience allows people to keep dreaming big in spite of limitations or adversity. I pray that God continues to bles you with health and incredible energy.

    Thank you for the time you took to share your hopeful adventures and your passion for life.

    I will continue to follow you and pray for you.

    Betsy Sophia

    Reply
  • Elizabeth Wonka Sep 19, 2013 

    Meghan,
    You were a joy and inspiration at 5, and so much more now! Your words speak volumes, and so eloquently….I hope we will see you again before too long!!
    Love from all of us Wonkas!

    Reply
  • Melissa Simpson Sep 12, 2013 

    Fantastic message in your story, thank you. I have shared with our 4000 facebook members who are mostly all Heart parents or have CHD themselves. I know that this will be a popular post offering hope for the future.

    Best your pioneering surgeon is pretty impressed with you too!

    Reply
  • Carrie Larsen Sep 10, 2013 

    I am so glad I stumbled upon this….Our son has HLHS. He’s 13 and doing well. You are such an inspiration and I can’t wait to show him your story. Thank you. You give us strength and courage to defy what the Dr.’s tell us our children wont be able to do!!

    Reply
  • Amy Covert Sep 10, 2013 

    I’m crying tears of joy for you, Meghan – my gorgeous almost 16 year old niece has HLHS and has taken to skiing and hiking. You are amazing and so is she. Your inspirational attitude will be of great comfort to many terrified parents. I appreciate this article and video tremendously… 🙂

    Reply
  • Sandra Rivera Sep 10, 2013 

    Meghan, first time I met you and your mom was about 10 years ago, when you were attending TASIS and living in the same street in Puerto Rico. First I saw of you was another ‘blondie’ bouncing and tumbling around the school. I never even knew about yr challenge until that day you had to be whisked to the hospital for irregular heart rhythm and I found your brave mom in distress… No one would’ve guessed anything was wrong with yr heart then, you were and ARE clearly living your life to the fullest and thankfully your parents were always brave enough to allow you to set your own boundaries. Through the years your stories of accomplishments have amazed me! I am SO SO proud of you and I’m just a distant bystander… Just know, as incredibly inspirational you must be for children and parents who go through this as well, you are also an amazing inspiration for anyone else! Whenever I drag my feet and get consumed with the pity stuff of life, these kind of posts with your bright smile and amazing strength and energy, totally changes my day and my attitude! Thank you for sharing, Meghan. I will be following and sharing your adventures. You ROCK. Hugs xxx Sandra

    Reply
  • Mary Jo Lalor Sep 09, 2013 

    You are such an inspiration to me and a role model for my 7 year old daughter who has HLHS! Thank you for posting your story.

    Reply
  • Nicole Corbesato Sep 09, 2013 

    I love you Meg!! You have inspired me since first learning of my daughters diagnosis of HLHS . Now I have 2!!! 2 biological daughters HLHS….my “make a wish” is for you to meet us. You Are AMAZING!

    Reply
  • Crisse Sep 09, 2013 

    Meghan, You are an inspiration to not only younger kids with similar defects, but to all the parents of kids with CHD’s!!! I love your determination and strength. You are a truly amazing young woman. You are giving young girls with CHD’s (or any young girl for that matter) a MAGNIFICENT role model to look up to! The sky is the limit, and you are living proof of that!

    Reply
  • Molly Sep 09, 2013 

    I just watched this with my 3 year old little girl who has HLHS. She asked, why do you have tears, Mommy? I told her it was because I hope she is like you and never afraid to do whatever she wants to do. <3

    Reply
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  • Joshua Myers Sep 09, 2013 

    Meghan, Keep pushing boundaries – you are a hero and an inspiration (even to an adaptive athlete like myself)!

    Reply

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