His Story Isn’t Finished

Written by Sherie Perry

When I was pregnant with my son Malachi, I never imagined I would hear the words “half a heart.”

Around 20 weeks into my pregnancy, we found out something was wrong with his heart. I remember being scared and confused because I didn’t really understand what it meant. All I knew was that my baby had a serious heart problem and that his life was going to be different.

Malachi was born about a week early. When he was only 7 days old, he had his first heart surgery and had a shunt placed. At around 6 months old he had his Glenn surgery. Then at 4 years old he had his Fontan.

I can still remember so many things about those years. The hospital became a place I knew too well. There were surgeries, tests, procedures, and so many times I had to try to be strong when I was scared myself.

His Fontan recovery was supposed to be another step, but it wasn’t easy. He ended up being in the hospital for about 12 days. One memory that still makes me smile is him dancing to “Thriller” with his chest tubes still in. That was Malachi. Even after everything he had been through, he could still find a way to be a kid.

People can look at him and not know what he has been through.

He has grown up living with a heart that only has one working ventricle. He has dealt with fatigue, lots of doctor appointments, catheterizations, missed days of school, and things that other kids his age don’t have to think about. There are also things people don’t see, like the anxiety that can come from growing up having so many medical experiences.

For a long time, I thought if we could just get through the Fontan, maybe the hardest part would be behind us.

I was wrong.

As he got older, we started hearing more about his Fontan pressures and what they could mean for his future. There have been times when doctors have talked with us about transplant evaluation and what could possibly be ahead.

Now he is 17 years old.

He is getting ready to graduate, and at the same time, we are facing another unknown.

His doctors have found changes in his liver and an enlarged spleen. His testing has shown signs that his liver may have been affected by everything his body has been through. He is scheduled to have a liver biopsy to find out how much damage there really is.

I would be lying if I said I wasn’t scared.

There have been conversations about the possibility of a liver transplant, a heart transplant, or even a combined heart and liver transplant depending on what the biopsy shows. We don’t have those answers yet.

And that is one of the hardest parts of being a heart mom.

You learn to live with not knowing.

You learn to celebrate the good news because you know how quickly things can change.

Recently, Malachi had another catheterization, and we were told that his Fontan hemodynamics were stable. That was good news. It was an answered prayer for us.

I’ve learned that sometimes you have to celebrate the good moments without letting fear steal them from you.

I have also learned that faith doesn’t mean you aren’t scared. I can be scared and still trust God.

There have been so many times when I didn’t know how we were going to get through something. But somehow, we did. One surgery became another birthday. One hospital stay became another year. One scary test became another answered prayer.

Malachi has taught me more about strength than I ever knew I needed to learn.

He has also taught me that a diagnosis doesn’t get to tell you the whole story of a child.

When I think back to the pregnant mom who first heard that her baby had a serious heart defect, I wish I could go back and tell her that she was going to make it through things she couldn’t even imagine yet.

I would tell her that she is allowed to be scared.

I would tell her that she doesn’t have to have all the answers.

I would tell her to take it one day at a time.

And I would tell her to hold onto every good moment, because those moments become some of the most precious memories you will ever have.

I don’t know exactly what the future holds for Malachi.

Right now, I’m praying before I know the answers.

I’m praying that his biopsy won’t show what I’m afraid it might show. I’m praying for his future. I’m praying for strength. And

I’m trusting God with the parts I cannot control.

Seventeen years ago, I was told my baby had half a heart.

Today, I look at my son and I don’t see half of anything.

I see the little boy who danced with chest tubes.

I see the teenager who made it through more than most people will ever understand.

I see my son.

And I’m still here, still fighting for him, still praying for him, and still believing that his story isn’t finished.