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Family shares story to raise awareness on congenital heart disorder

'There are about 40,000 CHD births per year,' doctor says
Heart Warrior.PNG
Posted at 10:15 PM, Feb 10, 2022
and last updated 2022-02-11 11:59:06-05

PORT ST. LUCIE, Fla.  — A Port St Lucie family is sharing their young daughter's story of perseverance and survival in an effort to inspire other families.

This as 4-year-old McKenna Lewis was born with half a heart.

It's a form of a congenital heart defect that was diagnosed while her mother, Stephanie Lewis, was pregnant.

"It was heartbreaking and emotionally. It was extremely difficult to celebrate all the wins of pregnancy until she was born. Usually, you get to enjoy your baby shower and you get to celebrate that you're bringing a child into the world," said Lewis. "It's a special time for any mother, and for me, I felt like there was this underlying uncertainty cause you don't know if they're going to survive even after they're born."

Lewis said when she gave birth, McKenna had to be airlifted to the hospital and underwent surgery when she was 5 days old.

"She's a major fighter. She's been through more than anyone her age and you can't even tell by looking at her," said Lewis.

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McKenna has a passion for gymnastics and her family calls her a heart warrior, as she wants to be a doctor when she grows up.

Lewis has been selected as a "Women of Impact" with the American Heart Association.

The Women of Impact Campaign challenges a select group of women to champion women's heart health over an eight-week period.

Several Women of Impact will be raising awareness and funds in Palm Beach County leading up to the April 27 Go Red For Women Luncheon.

"I'm a mom of a child affected with heart disease, but I'm also still a woman that could potentially be affected by heart disease in my future. So, I think it's important just as a whole to be able to relate on multiple levels to women affected by heart disease," said Lewis. "If she has to live her entire life as single ventricle and go on to have a family of her own and she's still single ventricle and she remains healthy and happy and doesn't have to have a transplant that would be amazing."

McKenna Lewis.PNG

Lewis' efforts are nationwide as Feb. 7-14 is CHD awareness week.

"There's about 40,000 CHD births per year and so, while it's a relatively rare disorder, it is the most common of all birth defects," said Dr. Keila N. Lopez with pediatric cardiology at Texas Children's Hospital.

Lopez said, often, many adults are living with undiagnosed congenital heart disease.

"When we see those patients it's really pertinent and important for those individuals to receive the appropriate care, the appropriate surgical care, the appropriate cardiology care, and individuals who are trained to treat those patients," said Lopez.

The American Heart Association and the Children's Heart Foundation are partnering up and committing nearly $15M to fund research through 2029.