Victoria Lewellen was about 10 years old when her pediatrician detected a heart murmur during a routine exam.

Follow-up medical tests revealed she had a bicuspid aortic valve — a condition that had gone undiagnosed since her birth. It is the most common congenital heart condition and it may run in families.

BAV didn’t cause Lewellen any problems as a child. She didn’t get tired when she was running around playing with friends. And her annual echocardiograms showed her heart was working fine. Since everything was going well, Lewellen stopped getting the yearly heart tests in high school.

“I guess we just didn’t really understand what risks could be involved,” she said.

Then, one day in January 2015, while sitting in her car, Lewellen developed severe chest pain. Her first thought, she recalled, was that she was having a heart attack. Yet she wrote it off as a panic attack — even though she’d never had one before.

But the pain kept getting worse. Four hours later, she went to the emergency room. Twelve hours after that, doctors told her she needed emergency open-heart surgery.

Lewellen said her doctors told her she had a 25 percent to 50 percent chance of surviving the open-heart surgery she needed to repair her aorta. They also explained that she wouldn’t live much longer if she didn’t have the procedure.

“I’m a numbers person,” said the 45-year-old former certified public accountant from Kansas City, Missouri. “I did the reverse math in my head. I said, ‘oh well, I don’t want to have that surgery because those are terrible odds and no, thank you.”

Her thoughts turned to her two young daughters, then ages 7 and 4. She changed her mind.

Victoria Lewellen with her daughters Logan and Taylor. (Photo courtesy of Victoria Lewellen)

Victoria Lewellen with her daughters Logan (right) and Taylor (left). (Photo courtesy of Victoria Lewellen)

The road to recovery was hard physically and emotionally.

She didn’t bounce back as quickly as doctors thought she would. In addition, she needed to be treated for pneumonia and inflammation of her chest tissue. Going for cardiac rehab was rough, she said, because most of the other patients were men over 70 and she couldn’t relate to them.

Looking back, Lewellen said she sees her story as a cautionary tale of what happens when doctors don’t do enough to inform patients about their health.

During her first pregnancy, she said, her obstetrician advised her to have an echocardiogram because she had BAV — so she did. But no one ever took the time to explain the results. Instead, she said, she was told to come back a year later for a follow-up test. But she never did.

“I just felt like every year it’s the same old thing: ‘Just come back next year,’” she said.

“I thought I did all the right things,” said Lewellen. “I was vegetarian, I exercised, I didn’t drink much, I didn’t do drugs, I didn’t smoke.”

After she recovered from her heart surgery, Lewellen made it her mission to encourage other women to focus on their heart health.

“We always tell her, it was almost like she survived this for a purpose,” said Dr. Chie Rivera, a friend of Lewellen’s who is a hospitalist in Kansas City.

Rivera said she’s proud of the work Lewellen does to encourage other women to take charge of their heart health. She also said she sees her friend’s experience as a sobering reminder to doctors of the need to be attentive to women’s hearts.

Today, Lewellen’s volunteer work includes crocheting red hats for Little Hats, Big Hearts, an American Heart Association and The Children’s Heart Foundation initiative to create awareness of congenital heart defects. (Her mother also makes hats.)

“Every stitch felt like being proactive and making a difference in the cause,” said Lewellen, who is also an ambassador for AHA’s Go Red For Women movement.

Her advocacy is driven in part by her now 7-year-old daughter, Taylor, who was born with mitral valve regurgitation, a condition that causes blood to flow backward in the heart when the left ventricle contracts.

Lewellen said her journey has made her a more diligent patient. She’s also become more demanding of her daughters’ pediatrician.

“I’m not the same woman that I was,” said Lewellen. “I thought [my heart] was OK and I almost died. So that’s not going to happen to my kid.”

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