One Mom’s Story: Hypoplastic Left Heart Syndrome

Hearing my son get diagnosed with hypoplastic left heart syndrome was the scariest thing that’s ever happened to me. I didn’t know it was possible for somebody to live with only half of a heart.

Finding out that my unborn child would need at least three open heart surgeries and, someday, a heart transplant, completely shattered my world.

Hypoplastic left heart syndrome is a complex and rare heart defect. The left side of the heart does not form properly and cannot effectively pump blood to the body. We were told that without medical intervention right after birth that Walker would not have a chance to survive. I can honestly say that was the worst day of my life. I had so many questions going through my mind.

Why me? How am I going to do this?

Most of the time, when you find out you’re going to have a baby you are so excited and go into full-blown planning mode. You get all the cute onesies, blankets, the car seat and stroller. But, with Walker, I couldn’t bring myself to buy anything. Every time I would look at baby clothes I wanted to cry.

Can you wear clothes in the hospital after having open heart surgery? What kind of stuff will he need? What if I don’t get to bring him home? That was the worst question that went through my mind.

We live in Southern Kentucky and there wasn’t a hospital that could provide our son with the medical treatment he needed. After researching hospitals and cardiac surgeons one of our best options was Nationwide Children’s Hospital a little over 300 miles away. When you’re talking about your child’s life, distance is just a number. You will do anything and everything you can to save your baby.

Walker has been through those three open-heart surgeries and a heart transplant and will, eventually, need another transplant. He has spent many months in the hospital in his life. We have learned that navigating this journey takes a very different kind of map, but we are still finding our way.

Since Walker was born we have had family and friends who couldn’t deal with it. Some people just don’t know what to say. They don’t want to say the wrong thing, so they say nothing at all. When you spend months and months in the hospital with a sick kid and they don’t call and check in, you grow apart. But the heart community is amazing and we have made many lifelong friends with people who can relate to what we have been through. We are also very fortunate for my parents and my younger sister who have helped so much with our other three children when we need to go to Ohio.

If your child has just been diagnosed with a heart defect, know you are not alone. There are so many of us who have been in your shoes and understand how scary it is. Also, know there are so many of us who have made it through those scary moments. Life on the other side of a heart diagnosis is still full of unknowns, but we take it one day at a time and most days are good now. Walker is an active, energetic 3 year-old who can run and play with his brothers!

Everyone always says, “I don’t know how you do it!” To be completely honest, I don’t either, but I know we have no other options. This is the life that we were given, so we choose to make the best of it. Walker is amazing. He always has a smile on his face and we know that he is truly the strong one. He’s our hero – we are just his sidekicks.

For more information about The Heart Center at Nationwide Children’s Hospital’s, click here.

Leave a Reply

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