Hope after congenital heart disease

Today, Ben is planning a wedding with his fiancée, Mollee in Georgia.

He's building a career, giving back through his nonprofit and embracing the life he once feared he might never get to live.

There was a time when Ben believed his future had already been decided.

"It felt like my life was over," he said.

For Ben and his family, hope had become harder to find.

Until they found it again at Dell Children's Medical Center in Austin, Texas.

A normal childhood despite a congenital heart defect

Ben was born with transposition of the great arteries, a complex congenital heart defect diagnosed shortly after birth.

Growing up in Georgia, he received care close to home and underwent his first open-heart surgery at just six days old.

From there, life looked surprisingly ordinary.

He grew up playing baseball, staying active and doing nearly everything his peers could do. Aside from regular visits with his cardiologist, his heart condition rarely slowed him down.

His parents made a conscious decision to let him experience childhood as normally as possible.

"We just let him be who he was supposed to be," his mom recalled.

For sixteen years, that's exactly what happened.

Until one summer, everything changed.

When life took an unexpected turn

During baseball conditioning before his sophomore year of high school, Ben noticed something felt different.

The athlete who had always been one of the fastest on the field suddenly couldn't keep up.

Testing revealed that the heart valve his doctor had monitored since birth had worsened.

At 16 years old, Ben faced his second open-heart surgery.

"It was confusing," he said. "I didn't really know what I was getting into."

The surgery was successful, and within weeks, he was back on the baseball field determined to finish high school doing what he loved.

His family believed they had overcome another obstacle.

They didn't know an even more difficult chapter was still ahead.

When endocarditis changed everything or A heart infection changed everything

After graduating high school, Ben enrolled at the University of Georgia.

Life felt normal again.

Then the unexplained fevers started.

At first, doctors believed Ben had pericarditis, inflammation of the thin sac surrounding the heart. But as his symptoms continued, he underwent months of testing and hospital stays. Eventually, his care team discovered he had developed endocarditis, a serious infection of the inner lining of the heart.

He underwent another complex heart surgery.

While the procedure saved his life, what followed was even harder.

Ben and his family were told that if he ever needed another heart surgery, he likely wouldn't survive it.

His father remembers that conversation clearly.

"Hope was lost," Ben’s father said.

The surgery had kept Ben alive.

But it also left him believing the life he had imagined was no longer possible.

The journey to Austin for advanced pediatric heart care

For years, Ben's family had trusted the team caring for him close to home in Georgia.

But after another surgery and devastating news about his future, they knew they needed another path forward.

They reached out to someone they had never forgotten.

Amy Greenwood Hemingway, DNP, CNS, CPNP-AC/PC, a nurse practitioner with the Texas Center for Pediatric & Congenital Heart Disease at Dell Children’s Medical Center.

Years earlier, Amy had cared for Ben during his surgery as a teenager. Even after the family returned home to Georgia, they stayed in touch.

When Ben's mother called her after Ben's latest surgery, he wasn't looking for guarantees.

He was looking for hope.

Amy encouraged the family to come to Dell Children's Medical Center for a second opinion.

In January 2025, Ben traveled from Georgia to Austin.

More than another heart surgery

From the moment Ben arrived at Dell Children's, something felt different.

He wasn't treated as an impossible case.

He was treated as a person.

The congenital heart team created a plan that addressed not only Ben's heart, but also the emotional weight he had carried for years.

For the first time since his diagnosis with endocarditis, Ben felt something he hadn't experienced in a long time.

Confidence.

"They understood how serious it was," Ben said. "But they also told me they could do it."

His care extended far beyond the operating room.

Psychologists helped him process the emotional weight of everything he had been through. And before surgery, his care team paused to pray with him.

"I felt like I was their child," Ben said. 

For his parents, the difference was impossible to miss. "They gave him comfort. They gave us comfort," his mom said.

Healing beyond the heart

Before Ben returned home, the team at Dell Children's addressed something that had followed him for years.

For years, the blood thinners Ben needed for his heart condition caused severe nosebleeds that disrupted everyday life. They caused him to miss holidays, family gatherings and even his grandfather's funeral.

While recovering from heart surgery, an ENT specialist visited Ben at his bedside, identified the source of the bleeding and treated it before he went home.

For Ben's father, that moment represented something much bigger than solving another medical problem.

It showed how every member of the care team worked together to care for the whole patient—not just one diagnosis.

"It felt like we were finally putting a bow on everything," he said.

For Ben, it was one more reminder that healing can happen in ways you don't always expect.

Choosing to live

Today, Ben's story looks very different than it once did.

He graduated from college.

He recently became engaged.

He's beginning his career.

And alongside his family, he founded a nonprofit dedicated to supporting children, young adults and families navigating congenital heart disease.

Inspired by Ben's own journey, his foundation focuses on something that is often overlooked after open-heart surgery: the emotional and mental healing that comes long after physical recovery.

"Some people go through this and just exist," Ben said. "I choose every day to live."

Passing hope forward after a congenital heart diagnosis 

If you ask Ben's mom what she wishes every family facing a congenital heart diagnosis could know, her answer is immediate.

Hope.

"When Ben was born, I would have given anything to meet someone who had made it," she said. "Now Ben gets to be that person for someone else."

If your child has complex congenital heart disease, the nationally ranked Texas Center for Pediatric & Congenital Heart Disease at Dell Children's Medical Center provides advanced, compassionate care for patients from infancy through adulthood. Learn more about our program or ask your child's Pediatrician or doctor about a referral.

This blog is intended for general informational use. Any health-related information shared is not meant to provide or replace professional medical advice and does not establish a patient-provider relationship. If you are experiencing a medical emergency, call 911 or go to the nearest emergency room.