Stories Along The Way

When your child is sick, it is one of the hardest things a parent can experience. But when a doctor tells you that your child needs open-heart surgery, it is difficult to describe the fear that comes with those words.

My son was born with congenital heart disease. His heart murmur was first noticed when he was about eight months old, and from then on, he had yearly appointments with his cardiologist.

When he was four years old, I took him to one of those appointments as usual. The cardiologist said everything looked fine, and we went home.

The next day, while I was at work, I received a call directly from his cardiologist.

As soon as I realized she was calling me personally, I knew something wasn’t right.

She told me that she had gone back and reviewed his echocardiogram more closely and discovered that he had a sinus venosus atrial septal defect (SVASD), a congenital heart defect.

Then she told me something I was not prepared to hear.

My four-year-old son needed open-heart surgery.

He was only four years old.

He was my child. My only child.

I immediately started crying. I was afraid of the word surgery, and it was difficult to process everything she was telling me.

Just the day before, I had walked out of his appointment believing everything was fine. Now I was standing at work being told that my little boy needed heart surgery.

It took me almost five months from the time we were told he needed surgery until I felt ready to go through with it.

Those months were difficult.

I talked to family and friends, but sometimes I felt as though they didn’t fully understand why I was so afraid. Looking back, I realize they probably didn’t know what to say or how to help.

I needed to talk to parents who had actually experienced this.

So I started searching social media and found groups for parents of children with congenital heart defects. I found parents whose children had undergone open-heart surgery and who understood my fears without me having to explain them.

Those groups helped me tremendously.

I cried many nights during those months. The thought of something happening to my son was difficult to handle. I had struggled so much to become a mom, and now my little boy needed heart surgery.

I also prayed a lot. I prayed for my son’s safety, but I also prayed for peace for myself.

Eventually, I found that peace.

My faith and the support of other parents helped me get through those months.

My son’s dad handled the situation differently. At the time, I sometimes wondered why he didn’t seem as worried as I was.

I later realized that he was afraid too.

He simply didn’t show it the same way I did.

Then surgery day arrived.

I can still picture my little four-year-old walking into the hospital with his cute little backpack.

He didn’t fully understand what was about to happen. He was simply carrying his backpack and trusting us to take care of him.

I wanted my son to feel as safe and comfortable as possible. I didn’t want my fear to become his fear.

He loved Transformers, so that day I decorated his hospital room with Transformers figurines.

He also loved Mario, so I brought him a Mario stuffed animal and a cute blanket.

I wanted him to have familiar things around him in an unfamiliar place. I wanted his hospital room to have things that made him happy.

The hospital also gave him a very special teddy bear. The bear had a heart on its chest with a zipper that opened and closed, resembling the scar he would have after surgery.

I can still see him there—my little boy with his backpack, his Transformers, his Mario, and that special teddy bear.

My son was incredibly courageous.

At only four years old, he went through the appointments, the tests, and everything leading up to surgery.

When it was finally time for them to take him, he wrapped his little arms around me and hugged me tightly.

He didn’t want to let go.

Neither did I.

For a few moments, I just held him.

I wanted to keep holding him. I wanted to protect him from everything that was about to happen.

But eventually, I had to loosen my arms and let him go.

My heart ached.

I tried not to let him see how afraid I was because I wanted him to feel safe. I didn’t want my fear to become his fear.

Then we waited.

His surgery lasted approximately three and a half hours.

They were the longest three and a half hours of my life.

There is something about waiting while your child is in surgery that is difficult to explain unless you’ve experienced it. I prayed, watched the clock, and waited for someone to tell us he was okay.

Finally, we received the news we had been waiting for.

The surgery was over, and he was in recovery.

I could breathe again.

I will never forget when his dad saw him afterward.

Our little boy was connected to machines, tubes, wires, and cables.

His dad broke down and cried.

That was when I truly understood how much fear he had been carrying quietly.

It wasn’t that he didn’t care or wasn’t worried. He had been suffering in silence, trying to stay strong while carrying the fear and uncertainty of watching his child go through something so serious.

He simply dealt with it differently than I did.

There is one part of that experience I don’t have photographs of.

I never took pictures of my son while he was connected to all those machines, tubes, and wires. At the time, I didn’t want anyone to see him that way unless they came to visit him personally.

I don’t know if that was the right decision, and sometimes I wonder about it now. But at that moment, I was his mom trying to protect my little boy in the only way I knew how.

I didn’t need a photograph to remember that moment.

Twelve years later, I can still see it.

The hospital staff at Children’s Hospital were wonderful to our family. They cared for our little boy and helped us through something that was completely unfamiliar and frightening to us.

And then our son surprised us.

He got up and walked that same night.

Three days later, we were back home.

And there was the little boy whose heart had just been operated on already trying to jump off the couch.

After spending months worrying about everything that could go wrong, seeing him wanting to play again was something I will never forget.

There was also his scar.

I never wanted my son to look at the scar on his chest and think there was something wrong with him. I didn’t want him to hide it or be embarrassed by it.

So we gave it another name.

It was his superhero scar.

I wanted him to understand that his scar represented something incredibly brave that he had gone through.

And he embraced it.

He proudly showed his superhero scar to people.

To him, it wasn’t something to hide.

It was something that showed how courageous he had been.

Today marks 12 years since my son’s open-heart surgery.

Twelve years later, he is a healthy, active 16-year-old who loves sports and plays baseball. He is a teenager now, living life, growing, and becoming his own person.

His heart is still part of our journey. He continues to see his cardiologist every two years to make sure everything is okay. Those appointments are reminders of what he went through, but they are also reminders of how far he has come.

He believes in God, and so do I. Our faith has remained an important part of our journey and continues to give us strength and gratitude.

Even after twelve years, writing about this brings back emotions I thought had faded.

I am crying as I write this.

I can still picture that little backpack.

I can still see his four-year-old face.

And I can still feel those little arms wrapped tightly around me when he didn’t want to let go.

Some memories simply stay with you.

A mother’s heart remembers.

To Another CHD Parent

CHD is a journey no parent expects to face.

Before my son went through this, I didn’t fully understand how many different heart defects a child can be born with. Unless CHD touches your family, it can be difficult to realize how many children and parents are affected.

There is a community of CHD families who understand the fear, the waiting, the hospital rooms, the scars, the cardiology appointments, and the incredible courage these children show.

One of the most important things I learned was the value of finding other parents who had already walked this road.

Every child’s heart journey is different, and your child’s doctors are the people who should guide you through the medical decisions.

But when it comes to the emotions—the fear, the waiting, the questions, the tears, or simply needing someone who understands—other parents can be an incredible source of comfort.

If you are a parent going through this and need someone to talk to, have questions about our experience, or simply want to connect with someone who understands, I am here.

Twelve years ago, other parents gave me comfort when I needed it most. If sharing our experience can offer even a little of that same comfort to another family, then telling our story is worth it.

Sometimes you don’t need someone to tell you not to worry.

You just need someone who understands why you are worried.

Twelve years ago, I watched my four-year-old walk into the hospital carrying his little backpack.

Today, that little boy is a 16-year-old teenager who loves sports, plays baseball, believes in God, and continues to amaze me every day.

He still has his superhero scar.

And I still remember the courageous little boy who was brave enough to earn it.