Kaidence Stephenson, the Bountiful baby who survived 47 days on an experimental heart pump before receiving a heart transplant in late December 2007, is now an active, happy little girl who enjoys playing with her older brothers and walking around the house in her parents’ shoes.
“If you were to see her on the street or playing with the other kids, you’d never know the difference,” said Shauntelle Stephenson, Kaidence’s mother. “When I look at her, it’s hard for me to see the sick little girl she used to be.”
Kaidence, who first fell ill during a family vacation in July 2007, made the news that fall when she became the youngest Utah patient ever to be implanted with a Ventricular Assist Device (VAD), a heart pump that improves blood flow and either helps to keep them alive and healthy while waiting for a transplant.
Though the VAD gave Kaidence some of her energy back, doctors knew that it wasn’t a permanent solution and kept the baby on the transplant lists. Shauntelle received the call that a heart had been found just before Christmas. Kaidence went into surgery soon after, and finally came home from the hospital on Jan. 10 of last year.
Even now, Shauntelle can’t help but think of the family who chose to donate their child’s heart.
“We’ve come a long way since last year,” said Shauntelle. “It’s amazing to think we have this because of the gift that someone else gave us.”
When the family goes outside Kaidence still wears a face mask to protect her immune system, a practice which Shauntelle said she had relaxed on slightly until the recent inversion.
“It’s harder the older she gets,” said Shauntelle. “The cardiologist said ‘We want her to be a regular little girl,’ then gave me a list of things not to do.”
Then she laughed. “It’s OK, though. It’s our new normal.”
There are still challenges, however, including the financial costs that are never really going to go away.
“There’s the medications, all the different hospital stays and medical screenings, and over the last year the costs have gone up a few hundred dollars,” said Shauntelle, who added that the family has both her husband’s insurance and a sperate Medicare D policy just for Kaidence. “We have good insurance now, but I’m worried about when we don’t have those anymore.”
Kaidence also still doesn’t really enjoy eating, and currently receives most of her nutrition from a G-tube (a type of feeding tube.)
“We’ve talked to other people, and we’ve found that post-transplant kids are just not good eaters,” said Shauntelle. She did add, however, that Kaidence is quite fond of mini M&Ms. “We don’t know if the medications change the taste of things or what.”
Still, even the medications have faded with time, slightly easing the financial burden on the family along with making things easier for Kaidence.
“She’s down to five now from the 18 she was on just after she came home,” said Shauntelle. “So we’re making progress.”
Looking back, she’s amazed at how far they’ve already come.
“I don’t think people understand what a difference it makes when someone chooses to donate,” said Shauntelle. “It’s just tremendous.”