Fort Myers family learning to cope with child’s rare heart defect

LIVING WITH A COMPLICATED DISEASE 

Alexandra Frost’s baby, Emersynn, was born with a congenital heart defect two years ago called “congenitally corrected transposition of the great arteries”, or CCTGA for short.

“It was…you know it was heartbreaking. It was something that we had never thought would ever happen,” Frost said.

It’s a medical condition where the heart’s lower half is reversed.

The Adult Congenital Heart Association says it’s unclear what causes the condition, and more research needs to be done to determine how it originates.

While some infants die because of the defect, other patients can live into old age with it.

“I’m super thankful, because I’ve just seen so many babies who have congenital heart defects who are super, super ill,” Frost said.

The most common problems associated with the defect are heart rhythm problems, valve problems and heart failure.

“My biggest fears was for her oxygen to stop dropping, because that means we’re closer to the operation she’ll have to have,” Frost said.

It’s an operation that should correct that problem, and keep the two-year-old full of energy.

FINANCIAL AND PHYSICAL COSTS

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