At his mom’s 20-week pregnancy ultrasound, the clinician noticed something. Within just a few hours, they were told their baby had a rare condition -- hypoplastic left heart syndrome.

Published: April 27, 2022 | Updated: October 13, 2022

It’s not a matter of how much heart you have, but how much heart you give. That is true for

Johnathan Young. He was born with half of a working heart.

Johnathan, age 11, is the youngest of Greg and Jill Young’s three children. When Jill had her 20-week pregnancy ultrasound, the clinician noticed something and quickly called their OB/GYN. Within just a few hours, Greg and Jill were told their baby had a rare congenital heart condition called hypoplastic left heart syndrome (HLHS).

“HLHS is a congenital condition typically diagnosed through an ultrasound. It is when the left ventricle does not develop,” said Roddy D. McDowell, M.D., pediatric cardiologist with Norton

Children’s Heart Institute, affiliated with the UofL School of Medicine. “The left ventricle is the main pumping chamber of the heart. HLHS impacts about 1 in every 3,800 babies born in the U.S. each year.”

Without surgical intervention, the condition is 100% fatal. And years ago, that was the case

for all babies born with HLHS. Today it is treated through a series of three surgeries or, in the most severe cases, a heart transplant. Learning this, Jill and Greg braced themselves for what their family’s future would look like.

“We knew there would be a potential of three surgeries ahead for Johnathan to basically rewire his heart so that his right ventricle is his main pumping chamber,” Jill said.

When Johnathan was born on Dec. 28, 2010, he appeared to be in good condition despite his

diagnosis. He underwent his first open heart surgery at just 6 days old.

“The first surgery in the series is the Norwood procedure. A cardiothoracic surgeon creates a new aorta to connect to the right ventricle. This starts the process of rerouting blood flow to make the right ventricle the pumping chamber to the body,” Dr. McDowell said.

Johnathan’s surgery went well, and all signs pointed to an optimal recovery. But just a few days

later, he took a turn.

“At 13 days old, things just went downhill fast, but thank goodness his team of providers and

caregivers were on it,” Jill said.

“At 13 days old, things just went downhill fast, but thank goodness his team of providers and caregivers were on it.”

Johnathan was placed on extracorporeal membrane oxygenation (ECMO). ECMO does the work for the heart and lungs, allowing the body a chance to rest and heal. Jill and Greg prayed over their baby boy and waited for him to grow stronger. About six weeks after his surgery date, on Feb. 14, Valentine’s Day, Johnathan got to go home for the first time. It’s a holiday the family continues to celebrate as “Heart Day” each year.

Over the next four years, Johnathan returned to Norton Children’s Hospital for two additional open heart surgeries, the Glenn and Fontan procedures, and four heart catheterization procedures. These don’t cure HLHS, however, they give kids like Johnathan a chance to live.

“He takes medication every day to help keep his half a heart strong and has regular checkups with his cardiologist to monitor his progress,” Greg said.

Johnathan and kids like him living with congenital heart defects have many visits with cardiologists and may be in and out of the hospital many times as they grow into adults. Just a couple of decades ago, the odds were stacked against them. Today, thanks to medical advances, these kids can live long, healthy, active lives — as long as top-notch heart care is available to them.

That’s why Johnathan and his family have made it their mission to support children with congenital heart disease through fundraising and personal donations to the Jennifer Lawrence Cardiac Intensive Care Unit (CICU) at Norton Children’s Hospital. The Jennifer Lawrence CICU gives families peace of mind that there is a dedicated facility and specialized health care providers to take care of children with special hearts.

It’s Johnathan’s miraculous journey that led him to be nominated as the 2022 Bourbon & Bowties^TM event honoree. His parents hope that Johnathan’s story will bring comfort and optimism to other families facing a difficult congenital heart disease diagnosis.

A giving heart. A source of encouragement. A team player. Those are the words Johnathan’s two older sisters and his basketball teammates use to describe him.

“Whether he is cheering his sisters on during their volleyball games or playing basketball with his friends at school, Johnathan always beams with a smile and gives it 110%,” Greg said.