A woman lived with an undiagnosed heart defect for 50 years before a specialist identified it, and told her she needed open-heart surgery

Claudia Norman never worried about her heart murmur. But at 50 she learned had been born with a rare heart condition and needed open-heart surgery.

• Claudia Norman was born with a heart defect that wasn't diagnosed until she turned 50. 
• Norman didn't experience symptoms until a racing heart led her to a specialist for the diagnosis.
• She's raising awareness of women's heart health, and urging people to advocate for themselves. 

Claudia Norman always knew she had a heart murmur, but the diagnosis never affected her daily life or mentality. 

She has a strong belief that everything works out the way God intends it to, and she's regularly checked in with a cardiologist since childhood. "I had no reason to have anything more than just being monitored," Norman, who works for a healthcare company and lives in New Britain, Connecticut, told Insider. 

But in 2018 at age 50, a series of heart issues led Norman to a specialist, who diagnosed her with a congenital heart condition requiring open-heart surgery. 

Now a volunteer for the American Heart Association's Go Red For Women "Real Women" campaign, Norman wants to inspire others to "advocate for a solution — the best solution." 

Norman experienced a racing heart, which eventually led her to a solution 

In 2014, Norman came down with what felt like the flu, but turned out to be endocarditis, a bacterial infection of the heart that's more likely in people with heart conditions. She was hospitalized for six days, and underwent various heart-related tests in the follow-up. 

Nothing new turned up, and Norman was sent on her way. 

Four years later in 2018, Norman's heart started racing while she was in the shower. "It was that feeling like someone had just run a long marathon and I knew that wasn't right," she said.

She made an appointment with her cardiologist, but still went ahead to the church event where she was speaking that night. She later learned she could have had a stroke. 

The cardiologist prescribed medication to manage the arrhythmia, which worked but wasn't a permanent fix. For that, the doctor sent Norman to a specialist at the Connecticut Children's Medical Center, where she finally got her diagnosis: coronary cameral fistula, a rare congenital disorder that affects communication between a coronary artery and a heart chamber.

True to Norman's nature, the solution — open-heart surgery — didn't worry her. Instead, she felt relief. 

"It was probably the first time where I walked away with knowing: All right, this is what you really have, this is what it is, and this is what we have to do to treat it," she said. 

Walking helped Norman's recovery

The surgery corrected the fistula and treated her arrhythmia. Norman recovered well, following doctor's orders to walk regularly. She'd already been an avid walker, and had participated in AHA-sponsored walks and challenges before becoming the volunteer she is today. 

Getting back to walking "was slow-going at first because your mind wants to go farther than your body can initially," she said. "Over time, my heart was strengthened. And to this day, I continue to exercise." 

Norman's condition is rare and often asymptomatic 

According to AHA, heart disease and stroke cause 1 in 3 deaths among women each year, which is more than all cancers combined. 80% of such events can be prevented. 

Congenital heart defects are common, too, affecting about 1% of infants. A quarter of them will need surgery or other treatment before they turn 1, the CDC reports. 

Norman's particular condition, however, is rare and typically asymptomatic, one case study says. Often, people are only diagnosed if and when they have an unrelated complaint. While there's no consensus on how to treat it, both surgery and medical management — the watch-and-wait approach — can work. 

Norman says her path worked out exactly how and when it was supposed to. She has no regrets and only appreciation for the clinicians who've treated her along the way. "I am just truly grateful for my life, my health, and my strength," she said. "I'm healthy, I'm healed, and I'm whole."