CLEVELAND, OH (WOIO) - Congenital heart defects affect nearly one in every hundred babies born.
They're more common than cases of childhood cancer and cystic fibrosis but they are far less funded or researched.
Every 15 minutes, a child in the US is born with a congenital heart defect. About half are minor and can be treated, or are outgrown but some kids, like Charlie Nowak, have to have heart surgery as infants.
"You feel helpless. You're the one who is supposed to be able to help your kid and you can't," Charlie's mom, Michelle, said.
She affectionately calls her 11-year-old son her "little old man" outfitted with both a pacemaker and a defibrillator to help him manage several heart conditions.
"It's a double edged sword. He'll have to have these with him the rest of his life but it's the one thing that's going to save his life," she said.
The devices saved him recently when Charlie had what Michelle describes as "the big one," collapsing during gym class.
Dr. Tess Saarel at Cleveland Clinic Children's Hospital says parents are most concerned about the causes.
"Most of the time we actually don't know yet and that's why the research is so important so we can find out what factors are affecting the heart," she said.
Dr. Saarel says parents can help by asking about family history.
"We can now screen for these problems before birth. So it does help outcomes of babies if we know ahead of time," she said.
That allows doctors and parents to plan delivery and care accordingly.
Dr. Saarel also recommends that children go for their regular well child appointments because not all CHDs are detected right away. Some kids are asymptomatic, and some conditions get worse over time.
With a good repair, medication and devices like Charlie has, these kids can lead fairly normal lives. But it's something that's always looming.
"I don't go out to recess but I've been working on that, since I've been getting on the treadmill. I like to golf," said Charlie.
Charlie's working through his anxiety about his heart rate rising. But he uses a smart watch to monitor it, and he's working up to more physical activity.