Parents who lost baby to congenital heart defect create foundation Rocco's Heart

by Pat Shellenbarger | The Grand Rapids Press

Sunday March 15, 2009, 4:53 AM

WYOMING -- His life was short, but Rocco Hines' parents are determined the spirit he showed in those three months will help other babies afflicted with heart defects, including the one that claimed him.

That's why the Wyoming couple, Crista and Scotty Hines, formed Rocco's Heart, a nonprofit foundation to fund research into congenital heart defects and provide information and comfort to parents facing the pain they did a year ago.

Despite the odds, Rocco was a valiant fighter.

"It was unbelievable," Crista Hines said, just more than a year after he died. "He was poked and prodded and agitated, and he took it with a smile on his face."

Before Rocco was born, doctors knew his chances of survival were poor. An ultrasound showed he had a congenital abnormality called hypoplastic left heart syndrome. In effect, half his heart was missing.

He also lacked a hole between the left and right sides of his heart, causing blood to back up and damage his lungs. While he still was in his mother's womb, doctors at Children's Hospital Boston used a needle to open the hole, a procedure that since has been performed at the University of Michigan's Mott Children's Hospital.

By Rocco's birthday, Oct. 21, 2007, the hole had closed, and he faced more surgery at Mott, including two open-heart operations. His parents seldom left his bedside.

"We knew it was serious," his mother said. "There were days that were touch and go."

He died Jan. 17, 2008, never having left the hospital. Even before then, his parents talked about finding a way to give back.

"It was just kind of a 'some day we're going to do this,'" she said. "We wanted to do something, a chance to turn around and take our experience and try to do something to help other families."

Two months after he died, they founded Rocco's Heart with three goals: funding research, supporting families and raising awareness.

It's a modest operation based in their home. Crista is president and Scotty is vice president. Board members include two of Rocco's doctors, Aimee Armstrong and Richard Ohye.

So far, it has raised $1,500 with a goal of $5,000 the first year and twice that the second.

"I would love to shoot for the stars," Crista said.

For her and her husband, raising money to help babies and their parents is helping them deal with the death of their child.

"It's a horrible experience," she said. "I wouldn't wish it on anybody. To be able to wake up every day and think we have the power to do something about it is a huge opportunity.

"It's a beautiful thing to be able to think his energy and strength in three tiny months had so much impact on so many people."

E-mail Pat Shellenbarger: pshellenbarger@grpress.com