50 years living with a Congenital Heart Defect she didn’t know about – Claudia Norman finally has open heart surgery in a children's hospital.
Claudia Norman’s heart troubles went undiagnosed with certainty for 50 years — despite a battery of tests and doctors’ visits and a hospitalization.
Finally, an adult congenital heart defect specialist at a pediatric hospital told her he knew the problem and could surgically repair it.
“While I don’t think anyone wants to have open-heart surgery, I wanted a solution,” said Claudia, 53. “I wanted to be able to feel better. I remember leaving the appointment thinking I could finally exhale.”
Claudia was diagnosed with a coronary cameral fistula, an abnormal communication between a coronary artery and one of the chambers of her heart. Until then, doctors kept telling her she had a heart murmur, hole in her heart and an enlarged heart.
“They knew I had some type of hole in my heart, but I never had any type of issues,” said Claudia, of New Britain, Connecticut. “I’ve always been active. I’m an avid walker and never really had any significant issues. I work for a health care company, so I always promoted healthy living.”
But in 2014, Claudia was in the hospital for six days with endocarditis, a bacterial infection that settles in the heart and has a greater risk of developing in people with heart conditions. At first, Claudia thought it might be the flu. But her racing heartbeat alarmed her cardiologist, who sent her to the emergency room.
Soon after recovering from endocarditis, her cardiologist recommended she see a specialist at a world-renowned children’s hospital. “Doctors believed it was related to my enlarged heart. However, I never received a confident diagnosis of the issue and moreover, how to fix it. I prayed and began to daily recite Bible verses about healing.” She recovered, and life returned to normal.
But in 2018, Claudia could feel her heart racing again.
“It startled me to the point where I sat down,” she said. “I was in the shower. I got out of the shower and got back in bed, but then went on with my day.”
Her cardiologist prescribed medicine to help with her heart rate, but after a few months he told her there wasn’t much else he could do. He recommended she see a pediatric adult congenital heart specialist who ran more tests.
“I remember one of them saying, ‘We know what this is. We saw this with somebody else a couple of days ago.’”
It’s what Claudia had longed to hear.
“You’ve got to advocate for yourself,” she said. “Just because providers may not always know at the time what to do, you need to make sure to get to a place where you advocate for yourself until you find that solution.”
While awaiting surgery, Claudia felt ill one day and went to see her cardiologist. She watched as the nurse looked anxious when she checked Claudia’s heart rate because it was racing. Doctors and performed an electrocardiogram, or EKG, and ultimately had to shock Claudia’s heart into a normal rhythm.
Finally, in May 2019, Claudia underwent open-heart surgery to repair the fistula. She also had a procedure called maze to treat her atrial fibrillation.
“I like to say that I’m happy, I’m healthy, I’m healed and I’m whole,” said Claudia, who was raised a preacher’s daughter. “I’m left with this lovely scar, but it’s my reminder of the faithfulness, the grace of God, the fact I’m still alive.”