For Natalie Moye, what started as a basic wellness check led to a life-changing diagnosis.
Natalie Moye and her family.
She was 26, and she had just given birth to her first child, Elliot, 8 weeks earlier. She wanted to lose the baby weight, so she decided to join a weight loss and healthy lifestyle program. Before she could begin, she needed to get some routine blood work and an EKG.
But after the doctor reviewed her EKG, he looked concerned. He asked Natalie if she had ever had an EKG before. As far as she could remember, she had never needed one. She had always been healthy—she even played sports back in high school.
The doctor told Natalie something was abnormal: Her QT interval was prolonged. The doctor said it could be the result of some medicine Natalie was taking, but just to be safe, he made an appointment for her to see a cardiologist the following week.
Seeking Answers
The news at the cardiologist’s office was no better—Natalie’s QT interval was even longer. The cardiologist said Natalie could have Long QT Syndrome. Natalie had never heard of it, and she had no idea what it meant.
The cardiologist asked if she had ever fainted suddenly. She never had.
Then, he asked whether anyone in the family had died suddenly, and seemingly without explanation.
The answer was yes. When Natalie was 2 years old, her 23-year-old aunt died unexpectedly. The aunt had been on a ketogenic diet, and her potassium levels bottomed out. Ultimately, that was the believed cause of death.
When Natalie told the story, the cardiologist grew more concerned—and he was even more convinced she had Long QT Syndrome. From the look on his face, Natalie could tell this was serious.
“He scared me at that first appointment,” she said. Afraid and overwhelmed, she started sobbing. On top of caring for a newborn and managing postpartum emotions, now she was dealing with a potential life-changing diagnosis that could be connected to the death of her aunt.
The cardiologist said Natalie needed genetic testing, and she left with a prescription for a beta blocker. She was so distraught, she couldn’t drive home.
She wanted to get a second opinion. Her mom worked for a different cardiologist, and Natalie got an appointment with him the next day.
Sure enough, her QT interval was still long—530, to be exact. The doctor wanted more information. Right then and there, he did an EKG on Natalie’s mom. Her QT interval was also long.
“We were just all kind of blown away,” Natalie said.
She also learned she would need to get her baby boy tested. The weeks of waiting for his test results gave her a lot of anxiety—so much that she and her husband debated whether to have more children.
Finally, little Elliot’s results came back. He had Long QT Syndrome, too.
“I just had this feeling, ‘We’re all about to die,’” Natalie said.
But at the same time, she was thankful to know about the condition. If it hadn’t been for that first doctor who paid close attention to her EKG, they might never have been diagnosed. Natalie wrote him a letter, thanking him for potentially saving a life.
Natalie shared the diagnosis with her family members so they could be informed, too. Some chose to get tested, while others did not.
Living with LQTS
As she grappled with her new diagnosis, Natalie looked for support. She found it through Facebook groups: Long QT Syndrome Support and Learning Community and Living with an ICD.
It helped Natalie to hear from others who have Long QT Syndrome—and who were raising young kids with it.
“They had already been through the trenches,” she said.
The week of Elliot’s third birthday, Natalie went through a trench of her own. Elliot had a stomach bug and couldn’t keep anything down, so he ended up in the ICU. For a few seconds, the monitor showed he had a short run of torsade de pointes—a type of arrhythmia. The medical team rushed to his side. It was so brief, he didn’t faint. Thankfully, that’s the only scare they’ve had.
Now, Elliot is 4 years old, and he takes a beta blocker twice a day. Natalie sends an AED to school with him because “his heart is special like Mommy’s.” But that’s the extent of his knowledge for now, and Natalie wants him to live a full, normal life. He plays soccer, and he loves playing trains and riding his bike.
Natalie and her husband also have another child now—a 1-year-old girl named Camille. They had her tested as soon as she was born, and she doesn’t have Long QT Syndrome.
Not a day goes by that Natalie doesn’t think about Long QT Syndrome. But now that she’s done some research on the condition, she feels less anxious and more confident.
Getting the Right Treatment
She is also confident in her treatment. Shortly after her diagnosis, her cardiologist told her she needed an ICD. Just as before, Natalie wanted a second opinion. She got the same answer: She needed an ICD.
But getting an ICD was a big decision, and she wanted to feel completely comfortable. So her family traveled from their home in Alabama to the Mayo Clinic in Minnesota. There, Natalie saw Dr. Michael Ackerman, a leading expert on Long QT Syndrome.
During the visit, they determined that getting an ICD would indeed be the best treatment for Natalie’s situation. That gave Natalie the certainty she needed to move forward. Her ICD is in a unique spot—it’s in her abdomen, with epicardial leads. This placement made the most sense for her. Even though she still ended up with an ICD, she’s glad she didn’t just go with the first doctor’s recommendation.
Through her experiences, Natalie has learned the importance of advocating for her health, and she encourages others to do the same. Even if later doctors only confirm what the first one said, those extra opinions provide peace of mind—and that peace makes a big difference.
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