Chardon couple creates non-profit to help other families facing fetal heart defects like their son

CHARDON, Ohio -- After a pioneering fetal heart procedure helped save their son's life, a Chardon couple has started a non-profit foundation to help other families facing fetal heart defects.

Now 16 months old, Lorenzo Catanese, loves running around in the yard with his older brothers.

“This outcome, it's more than we ever hoped for or we ever could have imagined,” said his mother, Heather Catanese. “He truly is a miracle.”

When Heather was five months pregnant, a doppler image anatomy scan revealed Lorenzo had Hypoplastic Left Heart Syndrome, meaning the left side of his heart was not developing, and he had a severe leakage in a valve.

The condition is extremely rare and potentially fatal. Available research shows children born with the same combination of defects have just a 10 percent chance of surviving to six months.

“His was actually so severe they didn't think he would actually survive to term in the pregnancy,” Heather said.

Heather and her husband, Anthony, chose a risky in utero heart procedure called Fetal Aortic Valvuloplasty, which is performed at only a handful of hospitals, including University Hospitals Rainbow Babies and Children’s Hospital.

Doctors inserted a needle through Heather’s abdomen, into her uterus, through Lorenzo’s chest and into his aortic valve. They then inflated a tiny balloon to increase blood flow through his heart.

He was born healthy, and now only needs biannual scans to check his heart. He’s not on medication and has no restrictions.

“We want all babies who qualify for the procedure to have as good of an outcome as he did, to be as healthy as he is and to live as full of a life as he's living,” she said.

The couple launched the Fetal Heart Foundation last year. The non-profit benefits the Congenital Heart Collaborative at Rainbow Babies and Children’s Hospital, the team which performed the live-saving procedure.

Their foundation aims to raise awareness about the fetal imaging that discovered Lorenzo's heart problems and the procedure that saved his life. They also want to help fund families’ travel to the few hospitals that perform the procedure.

“Then the insurance companies will hopefully start recognizing this as an option,” Anthony said. “It was such a scary diagnosis, but I think the key is there are options out there.”

The foundation is holding its first gala fundraiser event on November 2 at 7 p.m. at the Cleveland Museum of Natural History.

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