Newborn heart surgery helps toddler born with Down syndrome thrive

ATLANTA - Chelsey and Joey Dillard's third child, Beau, 2, is the heart of their Kennesaw family of six.

"He's the happiest, sweetest, most loving little boy," Chelsey Dillard says. "He loves his siblings, loves to play. He loves music. He loves to dance."

Genetic disorder leads to hole in little boy's heart

Chelsey Dilalrd was 14-weeks pregnant with Beau in 2021, when the Dillards learned he had a genetic disorder known as Trisomy 21, or Down syndrome.

"We opted to do an amniocentesis a couple of weeks later, and it came back and confirmed that we were getting our extra special boy who at the time we were kind of terrified of, but loved already," Dillard says. 

"A couple of weeks later, we were told that he had a large heart defect, which was also terrifying.

But because Beau's heart defect was diagnosed prenatally, the Dillards got a head start, working with the cardiology team at Children's Healthcare of Atlanta to plan for his birth and treatment.

Chelsey also got online and started researching Down Syndrome and connecting with other families.

"I really had a lot of time to become educated about Down syndrome, and to really create a community that I could ask questions to, that would answer me honestly, that would support us and support him," she says.

Heart surgery required for toddler

When Beau Dillard was born on December 23, 2021, Dr. Nikhil Chanani, a cardiac ICU attending physician at Children's Healthcare was part of the newborn's medical team.

"Among children with Trisomy 21, probably anywhere in the range of 30 to 40%, will have significant heart disease or heart disease that requires an intervention," Dr. Chanani says. "In Beau's case, he had a hole in his between the chambers of his heart."

Chanani says that hole left Beau's heart unable to pump the blood where it needed to go.

"When his heart would squeeze, as opposed to all the blood going straight to the lungs and then out to the body, some of it would go to the lungs, instead of the body," he says. "This puts stress on his heart. This puts stress on his lungs."

Beau Dillard, now 2, underwent heart surgery when he was 5-weeks-old.

Surgery was always the plan, but Dr. Chanani says the team wanted to wait 4 to 6 months, to give the newborn a chance to grow and get stronger.

"I guess that just has better outcomes, or that's the ideal plan," Chelsey Dillard says. "Beau went into heart failure at about 3-weeks-old."

With Beau hospitalized, the Children's team was struggling to stabilize his heart and breathing.

He also was not getting enough nourishment to grow.

Setbacks for toddler after heart surgery

So, at 5 weeks of age, on February 1, 2022, Beau Dillard was rolled into a 6-hour heart surgery at Children's.

"You always have to weigh the risks and benefits," Dr. Chanani says. "In Beau's case, our hand was forced. You know, we really felt that it was the best thing for him."

Beau Dillard's recovery was challenging, as he struggled with respiratory problems and a series of infections.

Today, his heart is doing well.

"From a cardiac perspective, Beau's doing great," Dr. Chanani says. "You know, his heart function has recovered."

He has some setbacks, including being hospitalized last fall with RSV.

But, with the help of a g-tube for nutritional support, Chelsey Dillard says her son is making headway.

"He works so hard to meet every milestone, and he does. He celebrates every tiny thing in the world," she says.

And the Dillards are celebrating Beau.

For parents who may follow in their footsteps, Chelsey Dillard has simple advice.

"The biggest thing is find your tribe," she says. "Find your tribe. Stick with them. Find your people."