How a boy's heart defect became a mom's mission

ATLANTA - At 5, Josiah Barfield is a frequent flyer here at Children's Healthcare of Atlanta at Egleston, recovering from his third open heart surgery.

"It was very hard to come back," Lacy Barfield says.

Barfield knows this was always part of the plan.

Josiah had his first heart repair operation at 8 days, another at 5 months.

This final procedure has been looming on the horizon for years.

"But at the same time, we're bringing back a little boy, and not a baby, who asked questions, and can express his fears and his worries," Lacy Barfield says.

It's been a long journey.  Right about the time this photo was taken, Lacy was about halfway through her pregnancy, when a routine scan revealed a problem with Josiah's heart.

They call this "Hypoplastic Left Heart Syndrome."

"Basically, he was going to be born with half a heart," Barfield says.  "The left side didn't fully develop."

So, Lacy and her husband Anthony braced themselves for what was to come.

"Our faith is our foundation. So, I think, I know that played a huge part.  But we were also reassured, you know, he's fine until he gets here."

Hours old, Josiah was transferred to Children's, where his parents met pediatric cardiac nurse Audrey Beckman.

"Lacy and Anthony were just the sweetest parents, and it's a scary, scary time for these parents, and a lot of times we are able to bond with them and be more like family, sometimes," Beckman says.  "And, it creates a relationship that you have with them throughout their life."

Soon, they were handing their son off to the OR team.

 "People said, 'You're so strong," Lacy Barfield says. "But, we didn't have a choice; in order for him to live, he had to have the surgery."

After the second operation, complications.

They spent 4 months in the hospital.

Then, got a break.

"Just to let him be a kid," Barfield says. "That's what we did for 4 and a half years.  He had to get stitches under his chin, because he fell, being a boy."

By the final procedure, Josiah had earned hundreds of Beads of Courage, one for each procedure, needle stick and night in the hospital.

Cardiothoracic surgeon Kirk Kanter, who performed all three of Josiah's heart repairs, had become a friend, and Lacy, a lifeline to other heart moms.

She returns to the hospital bringing food and sitting with parents whose children were also born with heart defects.

"She is someone we point to when there is a baby diagnosis before he is born, with Hypoplastic Left Heart, because she's navigated all of that," Audrey Beckman says.

Lacy hopes their story, Josiah's story, will give parents hope things will get better.

"So to have all that behind us, and know that we can just go and live life, is nice," she says.