Faces of the Games
SCOTTY JOHNSTON, 7
Wexford, PA
Expectant parents Donald and Diana Johnston were excited that their daughter Sarah, would soon have a younger sibling.
But within hours of little Scotty's birth, their world began to unravel. Scotty had been born with a heart defect that was so serious he would need to be moved to a children’s hospital for treatment. As the medical team prepared the newborn for transport, tiny Scotty was baptized. Then, the medical team delivered more bad news. Nothing could be done to save this child’s heart. His only hope for survival would be an immediate heart transplant.
The anguished Johnstons’ pleaded with the surgeons to try something, anything. But the specialists explained that Scotty’s combination of defects, which included hypoplastic left heart syndrome and severe pulmonary stenosis, made an immediate heart transplant his only option.
Scotty remained in the intensive care unit with his parents by his side night and day. They learned the lingo, the monitors and tests. “All sorts of questions run through your head and you feel so helpless,” recalls Diana. Days and nights ran together. With each hour that passed, the Johnstons knew their child’s chances were shrinking. “The hardest part was the waiting,” Diana said. “You want to help your little boy to live, but you can’t do anything but wait.”
Little Scotty held on for two weeks until an organ became available. “I can't begin to express the range of emotions I felt,” recalls Diana. “I was trembling with joy for Scotty's chance and shaking with fright about the upcoming surgery.” Mixed into all of this was an immense sadness and gratitude she felt for the donor family that just said good-bye to their newborn baby. Recalls Diana, who could only guess at the grief they felt – the grief she had feared every second of those long 14 days, “Their loving, selfless decision gave me my son.”
To see Scotty today, it’s hard to believe he was the newborn whose prognosis had been so grim. This thought was never far away as his parents and big sister, Sarah, stood at the edge of the pool during the National Kidney Foundation 2004 Transplant Games, and cheered him on while he competed in the 50 meter race. “We were all in tears. The entire crowd was on their feet
cheering our little guy on as he slowly swam across the pool,” Diana recalls. Thoughts, too, were never far from the courageous and generous donor family that gave Scotty this second chance at life.
Scotty is now training for the 2006 Transplant Games where he plans to compete in the swimming and cycling events. For now, though, he tells everyone, “Life is good.”
