Stories From The Heart: Growing Up With A Congenital Heart Defect

Written by:

Today on smallbeats, we’re featuring a guest post from one of our very own heart patients, William Hind. He shares what his life has been like as a heart kid—and now that he’s grown into a teenager.

Chances are, if you saw me on the street, you would think that I’m like any other 15-year-old boy. It’s only when I’m at the swimming pool and you can see the scars on my chest, or maybe it’s when I need to jump into the school elevator to go up a flight of stairs that you notice I’m different from the average teen. 

I was born with hypoplastic left heart syndrome (HLHS). It’s a congenital heart defect. Because of it, I’ve had to be put to sleep 19 times for different procedures and 10 major surgeries.

My First Surgery Was At 3 Months Old.

congenital heart defect

I have to take medication twice daily—and probably will for the rest of my life—and I also have some stomach complications as a result of my condition.

I used to get bullied. I couldn’t always do what the other kids got to do, and I had to miss school and some activities here and there. For example, I did baseball for three years, but I had to stop because stomach surgery brought my energy levels way down.

Over the years, what got me through all of the surgeries and procedures was my family, the amazing staff at Children’s Hospital & Medical Center in Omaha, and believe it or not, Ellen Degeneres.

Listening to Ellen crack jokes and really care about other people—all while being super funny—got me through some really tough surgeries. So, if she happens to be reading this … I’d love to meet you, Ellen!

Things Have Really Come Together For Me.

Now, I’m in high school, and I want more than anything to help give back to my community. This year, I am a member of the Student Activity Council (SAC) at school. Currently, I’m helping make posters and fundraise for Make-A-Wish Foundation.

I’m also on the Teen Advisory Council at Children’s Hospital & Medical Center in Omaha. I, along with five others, am working toward making a difference at the hospital that I grew up in. We give our perspective on what it’s like to be a patient at the hospital.

We just got the hospital to bring in a children’s exercise bike to replace the larger adult exercise bike that was in the fitness center. We figured a children’s hospital should also have a children’s bike!

I really enjoy being a part of the SAC and the Teen Advisory Council. They allow me to learn leadership skills and to give back.

Recently, I was asked to be in this short video about my experience here at Children’s:

Source: Children’s Hospital & Medical Center in Omaha

My Heart Condition Has Shaped My Future.

In the future, I would like to be a paramedic. I had a chance to go on a ride-along with the local fire department and saw that paramedics work hard, give back, and help people. I want to do that.

Being a heart kid, I’ve also learned a whole lot about the human anatomy. I think that is going to help me when I head to college in a few years.

The thing that scares me most about going off to college is that if I do get sick and need emergency surgery, it will be scary to be so far away from my family.

My parents and older and younger sisters are really great. They are supportive, and they watch out for me. It’s going to be hard to be so far away from them, but I want to go to college and get a good education, so that I can give back and continue to live life to the fullest.

Here’s What I’ve Learned.

My condition has taught me that you have to make the most of the life that you’re given. I’ve learned to just keep going and to not take things for granted. I don’t even take my condition for granted.

Being born with a congenital heart defect is just a part of who I am. It’s made me into the person I am, and for that, I’m really grateful.

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

12 Responses to "Stories From The Heart: Growing Up With A Congenital Heart Defect"

Add Comment
  1. Tomi Jo

    January 12, 2016 at 7:56 am

    This is inspiring, what a beautiful young boy! Makes me so happy to see that he is proud and happy, and doing great things! My son also was born with several congenital heart defects. He has undergone 3 open heart surgerys so far @ Childrens in Omaha and will be 2 in less then a month. Seeing this makes me believe everything will be okay. I hope he turns out just as happy and amazing as you, William. ❤️

    Reply
    • Barb Roessner

      January 21, 2016 at 10:59 am

      Thanks for taking the time to read and comment, Tomi Jo. You’re right: Heart kiddos like William are truly inspirational!

      Reply
  2. Janet Percy

    January 23, 2016 at 1:14 pm

    I have never met William, but feel that I know him well through his grandmother, my dear friend Nancy Murphie. Nancy has shared with me many of William’s incredibly difficult challenges that he has faced with the most amazing courage, and he is truly an inspiration to all who know him. I am so happy that he is doing well, and is looking forward to a college experience that will help him shine his light even brighter.

    Reply
  3. Liz

    January 24, 2016 at 10:50 am

    This is truly heartwarming. William your words are so helpful to hear. Hypoplastic left heart, leaky valves, daily medication, are all household words for us, but seeing the smile on your face, and seeing what lies in store for the bright and budding 10 year old heart kid we know and love, being able to hope that he shares your path, this is priceless. It is so great to see you confident and capable, thriving in high school in spite of the bullies, living your life to the fullest. May you continue to inspire just by being you.

    Reply
  4. Natalie Bushaw

    January 29, 2016 at 2:13 pm

    Our son Logan is 12 and is getting to that age where life gets real. He knows limitations, wants to play football and realizes life for him will always be a bit different. He’ll likely be on the list for a transplant this summer–something we’ve always known was in his future as a single right ventricle, heterotaxy kid. Seeing stories like this are so terrific for us to be able to share with him as inspiration. God has blessed our family richly during his twelve years and I just so enjoy reading stories like William’s. Thank you for being a great resource.

    Reply
  5. George Garcia

    March 6, 2016 at 8:06 pm

    This is very inspiring – it just not giving praise to a brave child in coping with his condition but this is enlightenment to family of those with same condition. Family‘s love and support is very important in every child’s condition and how well they will go through with it.

    Reply
    • Barb Roessner

      March 9, 2016 at 3:18 pm

      We greatly appreciate the perspective of young Mr. Hind. His story shows us some of the ups and downs of his condition, and his persistence in relying on his support team and building up to the young man he is today is quite a feat. He is an inspiration to us all! Thank you for your comment.

      Reply
  6. Pingback: My Top 4 Tips For How To Build Self-Esteem In Heart Kids - smallbeats

  7. Pingback: How We're Working Together To Improve The Lives Of HLHS Babies - smallbeats

  8. Pingback: Facing Tough Times: Words Of Wisdom From Adults With CHD (Part 1) - smallbeats

  9. Pingback: Facing Tough Times: Words Of Wisdom From Adults With CHD (Part 2) - smallbeats

Submit a comment

Your email address will not be published. Required fields are marked *