It's a condition you don't normally associate with kids. But it's the second leading cause of high school athletes collapsing on the field.
Congenital heart disease is a hidden danger for kids, can strike without warning in kids can be a silent killer because it strikes without warning.
"These patients are at risk for sudden death and that's their first symptom,” said Dr. Tom Kimball of Cincinnati Children’s Hospital.
The possibility was “terrifying” to Natalie Mauch, a Tri-State teen who’s headed to Indiana University. But when Natalie was 13, she suddenly found out she needed open heart surgery.
“It was overwhelming,” Natalie remembers. “I was old enough to know what was going on, but still so young and it was so scary.”
Doctors following up on a heart murmur discovered she had congential heart disease.
Her mother was stunned.
“To look at her when she was growing up, you would never think anything was wrong with her,” said Teresa Mauch. “She had no symptoms.”
Dr. Kimball drew a picture to explain the problem with Natalie’s heart.
“Her right coronary artery did not come off the proper location,” he said.
It came off the right side and coursed toward the left, running between two other major vessels. When those vessels pumped more blood during exercise – and Natalie played volleyball - the artery was squeezed.
That could have led to cardiac arrest.
The family chose open heart surgery.
“If we chose not to do it, it was like a time bomb,” Natalie’s mother said.
Doctors moved the artery where it needed to be, and now Natalie’s prognosis is “excellent,” Kimball said.
Now Kimball and his colleagues at Cincinnati Children’s have started a clinic for coronary artery disease.
But if there are no symptoms, and if doctors typically find congenital heart disease in kids by chance, how can a clinic help?
The clinic allows doctors to standardize how they treat the problem and to develop a special expertise, which could improve care, Kimball said.