LIVING with Hypoplastic Left Heart Syndrome

My name is Josh Shepherd, and I have been living with Hypoplastic Left Heart Syndrome for the past 19 years. When I was born it wasn’t likely I would live past two weeks. The average age of death currently is 4.5 days. Not a nice thought, I’m lucky to be where I am now. I wanted to write this as a kind of message of hope. A lot of what you read about HLHS can be negative. So it’s time for a bit of positivity.

What is HLHS?

Basically, the left side of my heart is seriously underdeveloped. My heart can’t pump blood through my body well. So when I was born the right side of my heart was doing all the work.

I needed to have surgery when I was born and have had several since then. The one I remember the most was my Fontan surgery. Most people who get that surgery survive past 20 years old. Some don’t and that’s a horrible thought.

What’s my Life been Like?

It’s been as good as I could ask for. My condition has held me back and I’m by no means healthy in comparison to other people without a condition. But for HLHS I’m doing pretty well. I take medication every day to keep me going, I’m in hospitals every few months for check-ups.

Sadly I was forced to leave high school due to my health. But I picked my education back up with college and I’m now about to start University along with everyone else who I was in school with

To everyone struggling with HLHS (or any other condition)

This isn’t just to the people who have it, I mean family as well. You, I’m sure, struggle with it just as much as the person with it does. You won’t have the same experiences as them, but they won’t have your experiences.

Life won’t be normal, but I’m fine. I adapted to my condition and I’m glad I grew up with it. It’s made me the person I am today. I don’t let it be my personality, but it’s part of who I am. The struggle you go through makes you stronger and don’t let anyone tell you differently.

You might not see yourself as normal, but that’s cool. You don’t want to be normal, I mean we’re literally alive with half our heart working regularly. If that isn’t tough and something to be proud of then I don’t know what is.

You’ve just gotta keep fighting it, don’t let it get the best of you. Keep surviving because it’s possible. Don’t let anything you’re currently struggling get the best of you. Whether it’s HLHS or another condition, or maybe you’ve lost someone important to you or any other issue in your life. I’m aware there are conditions much worse than mine, but those people shouldn’t let it hold them back either.

There are support groups out there, Facebook has a great HLHS community. You’ll find your people no matter where you go, Social Media might be seen as poisonous, but it helps people with similar issues connect.

There’s also Little Hearts Matter who still send me handwritten birthday and Christmas cards every year! And of course, the best support group is your family and friends. You’ll find your people no matter where you go, Social Media might be seen as poisonous, but it helps people with similar issues connect.