CHARLOTTE — A 13-year-old born with a heart defect has spent her life living with constant worry.
“I was very scared whenever I was going to sleep at night, that I would not wake up,” Renna-Davis Linn said.
No child should have to fear falling asleep and not waking up but for Linn, that was her reality. She has a congenital heart disease called TOF -- Tetralogy of Fallot. It’s diagnosed in 10% of heart patients worldwide.
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TOF is a condition that causes a hole to develop between the lower chambers of the heart, limiting blood flow to the lungs.
“I was noticing lots of dizziness, hypoxia, which is seeing stars,” Linn said. “I was noticing I was out of breath and a lot of fatigue.”
She was born with TOF and at just two months old, she underwent open-heart surgery to repair her valve. Her mother, Stephanie Linn, remembers the day doctors told her Renna would have to deal with this for the rest of her life.
“To find out you have this precious baby girl in front of you and that she is going to have challenges the rest of her life, it’s alarming,” Stephanie said. “It’s worrisome.”
A worry that lived in the back of their minds every time Renna stepped onto the cheerleading floor.
“Going to competitions, performing on stage, giving the crowds a wow, entertainment. I just love performing,” Renna said.
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She’s been competing in cheerleading competitions since she was two years old but over the last year, it became harder.
“I was noticing something just wasn’t right and I needed to do something fast or I was going downhill,” Renna remembered.
That’s when she turned to Levine Children’s Hospital. It’s the first hospital in North Carolina to offer a new non-surgical valve replacement procedure that goes through a patient’s vein in their leg. It’s much less invasive than open-heart surgery.
“The best part about it is children can be walking around by later that evening and home the next day,” said Atrium Health’s Dr. Joseph Paolillo.
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Doctors replaced Renna’s valve back in 2021. At the time, she was only the fifth person to have it done in the state.
“With this particular valve -- the harmony valve -- this may be the last valve they may need throughout the course of their lives,” Dr. Paolillo said.
Instead of being out of competitive cheer for months, Renna was back performing in just a few weeks.
“I am just so excited that I had it done finally, and get to experience all the amazing stuff that comes with it,” Renna said.
Today, Renna’s back to her old self -- healthy and confident. Her heart and drive are stronger than ever.
“Whoever you are, you can do it. If I can, you can,” Renna said. “Just want to let you know that you should not be living your life in fear.”
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