For Diana and Donald Johnston of Franklin Park, the joy they experienced with the birth of their son Scotty 10 years ago on June 22 was followed swiftly by heartache.

The problem was Scotty's heart. "When he was born, the nurses detected a heart murmur," his mom said. "They told us they would have a cardiologist come in."

The news the cardiologist delivered was bad: Scotty was born with a rare defect, hypoplastic left heart syndrome, in which the left side of the heart doesn't develop.

"What was a bit unusual in Scotty's case is that the right side [of his heart] was also defective," Ms. Johnston said. "That's why [the doctors] said there was nothing they could do to repair it."

Scotty's only hope was a heart transplant. But the typical wait for a donor is three months. The doctors at Children's Hospital of Pittsburgh didn't think he'd live that long.

"They suggested 'compassionate care,' which meant letting him go," Ms. Johnston said. "We just kept begging to list him for a transplant. On the second day of Scotty's life we met with all the surgeons and all the transplant people and they agreed to list him for another heart."

The next two weeks were torture for Diana and Donald Johnston.

"We sat by his bed [in the intensive care unit] day and night," Ms. Johnston said. "We had a little girl who had just turned 2. We were trying to keep things kind of normal for her. We just kept switching shifts."

On the 13th day, Dr. Frank Pigula placed his hand on Ms. Johnston's shoulder and told her, "We have a heart." The donor was an infant who had been born brain dead at the Mayo Clinic in Minnesota.

"I just sat there shaking," she said. "I couldn't believe we were getting a chance. One terrible thing is that someone else has lost a baby, that a newborn didn't survive."

The Johnstons have never learned the identity of the donor's parents, but have often sent them letters and pictures of Scotty through the Center for Organ Recovery and Education, a not-for-profit organ procurement organization serving Pennsylvania, New York and West Virginia.

"We'd love to meet them," Ms. Johnston said. "Their loving, selfless decision gave me my son. It's always a challenge what to say to them."

The July 7 transplant surgery, which was conducted by Dr. Pigula, was successful.

Both parents are certified public accountants, but Ms. Johnston quit her job to stay home with Scotty.

"There's a lot involved in followup care, especially when they're little," she said.

Scotty must take medicine to suppress his immune system, his mother said. He has a heart biopsy each year to make sure his body isn't rejecting the transplant.

"He's had four serious rejection episodes, a dozen hospital stays for one thing or another," she said.

But most were years ago. Aside from being small for his age, Scotty is a normal kid, his mother said.

"None of it fazes him," she said. "He's happy. He runs around and plays. He's the goalie on his ice hockey team. He rides his bike. We let him be a regular kid."

Scotty competed in swimming in the 2006 U.S. Transplant Games, sponsored by National Kidney Foundation, held that year in Louisville.

"The entire crowd was on their feet cheering our little guy as he swam slowly across the pool," his mom recalled. "We were all in tears."

Scotty plans to compete in running and cycling as well as swimming at this year's games, which will be held in Pittsburgh July 11-16.

For more information about the National Kidney Foundation U.S. Transplant Games, visit www.transplantgames.org.