"Just when the caterpillar thought the world was over it became a butterfly"
Tuesday, May 7, 2013
‘They gave us the gift of life’
May 03, 2013 | 458 views | 0 | 3 | |
KAIDENCE STEPHENSON Kaidence in the hospital during her second transplant surgery last fall. Courtesy photos
BY JENNIFFER WARDELL
Clipper Staff Writer
BOUNTIFUL — It’s taken the strength of three hearts to keep the light shining in six-year-old Kaidence Stephenson’s eyes.
The little girl, who loves dance and her three brothers, had her first heart transplant when she was just 10 months old. Her second came late last year, after a sudden bout of coronary heart disease attacked the first heart she had been given.
These days, Kaidence is looking forward to the upcoming summer season. Her mother Shauntelle is grateful for the gifts of two loving families whose children are no longer around to experience the same thing.
“It’s a very bittersweet thing,” said Shauntelle. “Kaidence is doing all the things a little girl should be doing, and we’re overwhelmed with the opportunity the donor families gave us. At the same time, we’ve gotten to know Kaidence’s first donor family and the sweet little boy who will never have those same opportunities.”
Kaidence’s own heart first failed her when she was only a few months old, and she was put on life support after becoming dangerously ill during a family vacation. She made the news later that year when she became the youngest patient in Utah (at the time) to be implanted with a Ventricular Assist Device, a heart pump that improves blood flow. The VAD kept her alive for 47 days, until she could be implanted with a new heart.
Shauntelle and her family remain in contact with the family of the little boy whose heart saved Kaidence’s life. The Stephensons have pictures of him, and Shauntelle thinks of him often.
“There’s such a personal side to it,” she said. “I think the relationship has been healing for both them and us.”
Kaidence thrived on the new heart, growing up healthy and strong. Shauntelle became involved in organ donation advocacy and watched her daughter thrive.
“If you were to see her on the street or playing with the other kids, you’d never know the difference,” said Shauntelle in an interview with the Clipper a year after the first transplant. “When I look at her, it’s hard for me to see the sick little girl she used to be.”
When Kaidence turned four, however, a surprise bout of coronary heart disease put the little girl back on the transplant lists. While the Stephensons waited for another miracle, groups such as Bountiful’s Creative Arts Academy helped raise money to defray some of the immense medical costs faced by the family.
Last fall, Kaidence received the heart she needed. Though a bad reaction to some of her immune suppression medication meant that she started 2013 sick, she’s since recovered and is back to dancing and playing with her brothers.
“She just had a biopsy, and it came back and looked really nice,” said Shauntelle. “We just have to keep her healthy.”
Though concerns about germs have kept her out of public school before now, if everything goes well the family plans to let Kaidence enroll in school this fall.
“We went and walked around the school,” said Shauntelle. “She’s so excited.”
Shauntelle has written to the family of Kaidence’s second donor, though they haven’t yet received a response. Even if they never do, Shauntelle will keep the memory of their gift firmly in mind.
“We know what it took,” she said, tears in her voice. “They gave us the gift of life.”
Primary Childrens Medical Center, Utah, United States
I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!