BOUNTIFUL It's all about heart.
In the first instance, for some unknown reason, Kaidence Stephenson's tiny heart developed problems. In the second instance, it was the outpouring of hundreds probably thousands of heart-felt bits of service offered to the Mike and Shauntelle Stephenson family through months of an up-and-down fight to keep Kaidence alive. The baby's extraordinary treatment included use of an artificial left ventricle and, ultimately, a heart transplant.
Kaidence came home Jan. 10, and on the following Saturday the Stephensons enjoyed a belated Christmas, rejoicing in the presence of their baby.
"We had two Christmases," said 6-year-old brother McCaden, who enjoyed Santa's visit on the usual day. But it was the January celebration of the gift of Kaidence's life that was the more meaningful for the parents.
With the Christmas tree dominating their living room and boxes that had held toys still in evidence, Shauntelle recounted the events that eclipsed the Dec. 25 celebration this year.
Kaidence had seemed well since her birth on Feb. 23, 2007, but at the end of July, she began to show evidence that things were not right.
It wasn't anything the parents could put a finger on, but Shauntelle felt sure something serious had happened. "I've been told since that a mother's intuition is pure inspiration," she said.
That was the beginning of an odyssey that kept Kaidence in the hospital for 128 days in her first 11 months of life. Her extraordinary treatment included the first use in this area of a German-designed left-ventricular assist device in an infant. That was made possible by a special dispensation by the U.S. Food and Drug Administration, which has not yet approved the Berlin heart for pediatric use in the United States.
"It's the smallest pump made," Shauntelle said. Mike easily cradles the device that saved his daughter's life in the palm of one hand. "It made an immediate difference in the quality of her life," she said. "She was ready when it came."
"It" was a donor heart that was transplanted into Kaidence's chest in mid-December. The availability of a donor heart in such a relatively short time was one of the string of miracles that preserved the baby's life, her parents say.
Mike and Shauntelle's families and members of the Bountiful 21st Ward of The Church of Jesus Christ of Latter-day Saints led the outpouring of service that began with the first news that Kaidence wasn't well. Members went to the extreme of replacing the roof on the Stephensons home. But aid also came from many sources outside the boundaries of the ward. Many well-wishers, LDS and not, have donated money to help defray the enormous costs of Kaidence's treatment and offered the expressions of love and sympathy that were just as important to the Stephensons as they hang on through the wild ride that has been their baby's lot.
"We couldn't have made it without the help," Shauntelle said.
A blog, www.4mykaidence.blogspot.com, was created to keep interested people updated on Kaidence's struggle. It has drawn thousands of comments from those who knew the Stephensons and those who didn't. Even a chance meeting in the grocery store was likely to spark interest and support from total strangers, Shauntelle found.
Throughout the ordeal, the Stephensons have enjoyed meals donated by friends, family and neighbors. The laundry has been done. Sidewalks were shoveled. McCaden got to his kindergarten classes while his mother was at the hospital with Kaidence, and Camden, 3, was cared for. Children in the ward Primary's Valiant class suggested a ward fast. Every group prayer asked for special blessings for Kaidence.
Kaidence is home, but the path ahead is uncertain. Pediatric cardiac transplant is in its very early stages, and there are few answers to what the future holds. The Stephensons still face enormous financial challenges. Their share after insurance of the baby's medication costs is $600 per month. But whatever lies ahead, Mike and Shauntelle are grateful for the lessons they have learned."I told a group of young women what I've found," Shauntelle said. "Trials are not punishments."