Living with congenital heart defects takes special strength

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Ronda Adamo remembers the fear that took hold of her heart when she learned that her grandson had serious congenital heart defects.

Brandon Halsey was born 10 years ago in northern Indiana and had to be airlifted to Riley Hospital for Children shortly after birth when it became clear that there was something wrong with his heart.

Diagnosed with Epstein anomaly, he underwent open-heart surgery as a baby to correct multiple defects and has had a challenging few years but is doing well today, said Adamo.

This year during Congenital Heart Defect Awareness Week, she is sharing an essay she wrote a few years ago to put words to the feelings she and so many other families have experienced as they navigate the complicated world of pediatric heart conditions. Following are excerpts from her essay.

“Today I tried to imagine a world without congenital heart disease.

It shook me to my core to think of it.

Just imagine never hearing those awful words, ‘There is something wrong with his heart.’ Or life-altering words, ‘He may not live.’

Imagine never knowing how much an echocardiogram can tell you about your baby’s heart.

Imagine not understanding what an EKG looks like or what those squiggly lines mean.

Imagine never having to watch a team of doctors flood into your child’s room to shock their tiny little heart back to a normal rhythm.

Imagine never hearing the call for a code blue for your child’s room.

Imagine never watching machines keep your baby alive.

Imagine not having to watch your child play and wonder how long his heart will hold up.

Imagine just for a minute what it would be like…”

Adamo, who for years volunteered with Mended Little Hearts, can’t imagine what it would be like to be outside the world of CHD. She wishes she could, but the words she wrote a few years ago still ring true today, she said.

“Brandon had a really rough start. I was distraught at the time. There is no anger that he was born like he is, but it sure would be nice to be in that other world,” she said.

A world without CHD.

Even after his surgeries, she worried.

“Frequently, he would be running and playing, and I would be terrified,” she said. “I wondered, ‘Can his heart do that? Can he handle it?’ We found his limits. We know what he can and can’t do now, but when he was younger, I’d wonder, ‘Is today the day?’ I think about it a lot.”

Brandon, 10, remains under the care of Riley cardiologist Dr. Adam Kean. He is dealing with some fluid retention around his heart, so he comes in to see the cardiology team at Riley every six months for the time being.

“We’re not dealing with the big and bad right now, so it’s a little less traumatic,” Adamo said.

But she knows there are families coming to grips with scary diagnoses and treatment options right now, and she hopes sharing her experience might offer some hope.

“When Brandon was little and going through the worst of the worst, we were sitting there for days on end at Riley and feeling very alone,” she said.

She saw a glimmer of hope in the early days of spring.

“I remember very clearly walking through the CVICU and I saw a bigger kid, maybe 13 or 14. Usually, all I saw were babies there and sometimes they didn’t go home. It hit me then that they can live. That physically took me to my knees,” Adamo said.

“That was so profound for me to realize they can live. And at that point, I realized that sharing Brandon’s story can help other people because there is hope, and that is the best message of all.”

Riley Children’s Health is consistently ranked among the nation’s leading pediatric cardiology and cardiac surgery programs by U.S. News & World Report.