Four-year-old Jack James of Clifton Park tilted his head skyward and pointed at a hawk suspended from the cathedral ceiling at the Albany Pine Bush Discovery Center.
“Is it real?” he asked his father, Matt.
And then he was off again, eyeing a model of a blue heron in flight, stopping for a few minutes to learn about how birds’ beaks work, and occasionally surveying his surroundings with a set of orange binoculars.
It was hard to imagine that the spunky little guy in the plaid shirt and blue jeans had been born with a serious heart defect.
“He turned blue and they didn’t know what was wrong with him,” Matt James recalled of the day his son was born.
Open heart surgery was performed when Jack was 5 days old to correct transposed arteries in his heart.
All sorts of families with similar stories could be found exploring the discovery center Sunday morning as part of a Cardiac Kids Outing sponsored by the American Heart Association.
The program offered a chance for young heart surgery survivors and their relatives to share stories and have a fun day out.
The outing is held annually, a few months before the Heart Walk, an event many of the families participate in to raise money for the American Heart Association.
“It’s not easy getting up and asking for money every day, but when I see how our research dollars have impacted these children’s lives, it more than makes it worth it,” commented Meredith Cohn, director of the Albany office of the AHA.
Guest of honor
Although the exhibits at the discovery center were the main attraction Sunday for the kids, their parents seemed most excited about the guest of honor: Neil Devejian, director of pediatric cardiac surgery at Albany Medical Center.
“Most of the families had him [perform] surgery for their kids, so he’s a local hero. If it wasn’t for him, their children wouldn’t be here today,” explained Sonja Seeloft, Heart Walk director for the Albany office of the AHA.
Devejian greeted the kids and their families like old friends, with an easy smile, warm hugs and questions about their lives.
“Hey buddy!” he called to T.J. Smith, 10, of New Lebanon, who promptly hid behind his mom, Christy. Both mother and son were born with the same heart defect.
Christy Smith, who was born in 1977, had what she called a “full repair” surgery at age two and a second operation, performed by Devejian, in 2008. Her son had his “full repair” surgery at 9 months old.
Neither have let their medical issue slow them down. Smith has participated in Warrior Dash events for the past two years and T.J. seems to be shaping up to be just as active as his mom.
Devejian, who is the only pediatric cardiothoracic surgeon in northeastern New York, said that since the days when Smith had her first operation, pediatric cardiac surgery has become very specialized with the ability “to fix every heart defect a kid can be born with, in little babies, newborns.”
During his 13-year career, he has operated on more than 1,000 children.
“We do 125 to 150 major pediatric cardiac operations per year,” he noted.
He beamed as many of his success stories scampered around the discovery center.
Four-year-old Eliana Clem of Ballston Spa was goofing around with her older sister, Emily, at the event.
Her mom, Leah, greeted Devejian warmly.
“He saved her life,” she said, nodding toward Eliana, who had open heart surgery when she was 2 days old.
Devejian remembered the entire procedure:
“Her aorta, the upper and lower part, were completely unconnected,” he recounted. “She needed to be on special medicines as soon as she was born that would keep a blood vessel open that would keep blood flowing to her lower body. She had to have major newborn surgery to put the two parts of the aorta back together and to close the hole in the lower chambers.”
He commented on how big the pixie-like blond-haired girl had grown.
“She’s not on the growth chart yet,” her mom replied with a laugh.
Nearby was another little sweetheart, this one a 6-year-old with long brown hair, glittery pink boots and a winning smile.
Ella Daikos of Malta was hamming it up for the camera without a care in the world.
She was diagnosed with a heart defect when she was 3 days old, but surgery wasn’t needed until she was 41⁄2 years old.
Handing Ella over to the surgeons was the scariest moment of her life, said her mom, Mary Daikos.
“But she’s a trouper,” she added, rumpling her daughter’s pretty brown hair.