Jenn Skelley of Homer Glen said she had no idea her five-month-old son had a congenital heart disease until 36 hours before his open heart surgery.
Skelley, now the fundraising coordinator for Conquering CHD – Illinois, is inviting the community to attend the Conquering CHD - Illinois 10th Annual Walk at 8:30 a.m. Sunday at The Promenade in Bolingbrook.
She said the walk will help educate and raise awareness about congenital heart disease and help support families affected by it.
According to the Conquering CHD website, “1 in 100 people are diagnosed with CHD and nearly 40,000 babies will be born with CHD in the U.S. this year.”
Many people with CHD are diagnosed during the mother’s pregnancy or shortly after birth, she said.
Skelley’s son David, now 7, wasn’t one of them.
‘Just a little tiny guy’
When David was born at 37 weeks, he seemed to be OK but didn’t tolerate formula, his mother said.
Skelley tried one formula brand after another. But David gained weight slowly. His hair fell out in clumps. He breathed hard.
“At one point in the beginning of 2015, he’d gone to the pediatrician probably three or four times in one month,” Skelley said.
At 5 months, David was a “super happy baby” and reached all his developmental milestones, Skelley said.
“His whole body had adapted to this,” Skelley said. “It was crazy ... he was just a tiny little guy.”
‘Don’t let this family go home’
One day at the pediatrician’s, David’s oxygen was in the 80s, a dangerous level. Skelley made an appointment at Ann & Robert H. Lurie Children’s Hospital of Chicago. Before the family headed there, a local hospital called and said David had an appointment for an echocardiogram, an ultrasound of the heart.
“To this day, we don’t know who ordered that,” Skelley said.
David’s official diagnosis was congenital discontinuous right pulmonary artery. And that deprived his body of oxygen “everywhere,” Skelley said.
Skelley said David’s hospital room was a “whirlwind of people” admitting him.
“It was scary for a first-time parent,” Skelley said. “Super scary.”
Within 36 hours, David had open heart surgery to reconstruct his right pulmonary artery. David’s reconstruction was described in the World Journal for Pediatric and Congential Heart Surgery.
But David’s troubles weren’t over.
Only a scar remains
The following year, David had a heart catheterization. During the procedure, his right pulmonary artery ruptured, Skelley said. David also had a stroke and his vocal cord was injured.
Eventually, David went to the former Rehabilitation Institute of Chicago (currently the Shirley Ryan AbilityLab), for several weeks of therapy, Skelley said.
David started taking Taekwondo at age 3, she said. Now, at age 7, he’s a red belt. He also started baseball this spring.
He’s “big on” Minecraft and Roblox,and is a “great kid” with a “kind heart” who “likes to have fun,” Skelley said.
“And he just recently started to love reading, which is awesome,” Skelley said.
Here’s why raising awareness for CHD is especially important, Skelley said.
“At the park the other day, he took his shirt off,” Skelley said. “The kids were commenting about his scar, and he didn’t know how to navigate that. Because we’ve always celebrated it. So he didn’t know how to navigate these kids he didn’t know seeing his scars and asking him questions.”
Skelley said that’s why events such as Sunday’s walk are important for CHD kids, too.
“They can just be around kids like them and talk to each other,” Skelley said.
To register for Sunday’s walk and for information, visit conqueringchd.org/events.