Raising awareness for rare congenital heart defect

ANSONIA, Conn. (WTNH) — Two young sisters in Ansonia, born with an extremely rare congenital heart defect, are faced with an uncertain prognosis.

Two-year-old Ava and four-year-old Bella Corbesato each have a scar on their chest, the only visible sign of their extremely rare congenital heart defect. Both have hypo-plastic left heart syndrome, or HLHS.

“They have no left ventricle,” said their mother, Nicole Corbesato. “Really, they only have their right side of the heart.”

“Not only is it exceedingly rare, but probably, I would say as a non-cardiologist, the most lethal cardiac anomaly,” said their neonatalogist Dr. Richard Freedman.

Basically, the little girls were born with half a heart. With three surgeries behind them, the prognosis from doctors is not so clear.

“We still don’t know,” said their father, P.J. Corbesato. “We had three planned surgeries, but we still don’t know what’s going to happen after that.”

“Right now there is always concern how well the heart is functioning through all the surgery,” said Dr. Freedman.

More rare the HLHS is two daughters having it.

“We didn’t know, can we handle two? Does anybody else have two?” said Nicole.

“When you mention to people in medicine the story of the Corbesato girls, they just look at you as if they just can’t believe it,” said Dr. Freedman.

Bella will soon undergo open heart surgery for a pacemaker after doctors discovered her heart was blocked.

“The long term, there are kids who will have a need for heart transplants,” Dr. Freedman said.

Developmental delays are also possible.

“They get tired easy, feeding issues, weight gain issues,” said Nicole.

But they hold on to faith and hope that their daughters will defy the odds.

“We want to see them grow, go to school, get married one day,” said P.J.

The Corbesatos share their story to raise awareness for much needed funding for congenital heart defect research. The family does take part in clinical trials.

To follow their journey, click here.

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