Christmas "miracle" - the gift of life

BOUNTIFUL, UTAH; December 25, 2008

The Stephenson family is attempting to pay forward all the kindness they received last Christmas when their 10-month-old daughter received a new heart.

Kaidence Stephenson, now 22 months old, was born healthy in February 2007, said her mother, Shauntelle Stephenson. But in August, the Bountiful family learned Kaidence had a serious heart problem.

On Dec. 23, 2007, a heart from another child was placed inside Kaidence's chest and began beating for her.

"Words can't express your feelings," said Mike Stephenson, her father. "Your child is going to get a chance at life, while at the same time grief washes over you, because a poor family had to lose a child so yours can live."

When the couple learned a heart had been found, they immediately knelt down to pray for the family whose child died.

"It is a forever bittersweet feeling," said Shauntelle Stephenson. "Another family chose to give to save you from the heartbreak of losing your child."

That family is in the Stephensons' thoughts daily as they express gratitude for being together this Christmas.

"You can't beat the Christmas gift we got last year, but we get to be together this year," Mike Stephenson said.

The Stephensons count their blessings as they look for ways to return random acts of kindness to neighbors and family members.

They said it was the community support that helped them get through the roller-coaster ride of their daughter's health problems after her heart condition was discovered.

"Meals came in every other night, after we came home until March," Shauntelle Stephenson said. "Our roof was leaking, and we came home to find our neighbors had stripped it and were putting new shingles on. Packages showed up at the doorstep, and a jar full of money with the book, 'Christmas Jar' was there one night."

Kaidence's heart problems began following a summer vacation in Idaho.

Shauntelle Stephenson took Kaidence and her sons, McCaden, now 7, and Camden, now 4, to visit family in Idaho in July 2007. Everyone came down with a stomach virus.

"A few weeks later I knew something was really wrong," she said about Kaidence.

Her daughter's cry was soft and weak, plus her cough did not sound normal. She took Kaidence to the doctor, who sent her to Lakeside Hospital in Bountiful. They sent her to Primary Children's Medical Center.

Kaidence was diagnosed with myocarditis, an inflammation of the middle layer of the heart wall, which is usually caused by a viral infection.

In October 2007, the Stephensons realized their daughter was getting worse. She was diagnosed with cardiomyopathy an enlarged heart which can be caused by myocarditis.

"She was throwing up all night," Shauntelle Stephenson said.

Doctors admitted Kaidence back in the hospital and on Oct. 29 when it looked bleak, Primary Children's medical staff installed outside of her small body a Berlin Heart, a mechanical "bridge-to-transplant" device created for use in pediatric patients. It did the pumping for the left side of Kaidence's heart, her mother said.

The hospital had to receive permission from the Food and Drug Administration to use the device for compassionate use, because the agency has not approved it.

The equipment was flown in from Germany, and two doctors also traveled from two other countries to Primary Children's to train the medical staff on how to put it in and how to care for Kaidence, Shauntelle Stephenson said.

"Kaidence was the first one in Utah to use it," she said. The pump was to help the infant until she became healthier or another heart was found for her.

Everything was going well, until the right side of her heart started failing in December.

The Stephensons knew they had two options: Hook a pump to the right side of the heart or hope for a heart transplant.

Now as they prepare for Christmas, the Stephensons can only talk about how grateful they are to have their only daughter home with their sons this year, even though medical bills keep piling up.

"We have great insurance," Shauntelle Stephenson said. "But a transplant is a financial obligation that never ends. We pay $600 a month in co-pay for her anti-rejection medication. Without insurance it would cost us $10,000 a month."

Kaidence is at the age where she's not too sure what Christmas is all about, her parents said. Hanging up high in the tree is an ornament that someday will be special to her.

The silver heart with a red-jeweled heart in the center is engraved with 2007 and for now, it is a special ornament for her parents.

Kaidence does like the lights on the tree and enjoys candy canes. Her family is not attending as many Christmas events as they have in the past in order to protect the tiny girl from cold and flu viruses that could easily kill her.

They have gone to church and school Christmas parties, because they want to show others how well she is doing.

But the downside is they worry.

"Every time someone coughs you're looking over your shoulder, trying to keep her away," Mike Stephenson said. "But everyone else was a part of it, supporting us and encouraging us with all their prayers."

Kaidence, who likes to play cars with her 4-year-old brother, has to wear a mask when she does go out. A sign on the door asks visitors to stay away if they have a cough, runny nose or have been around anyone who is ill.

And there is always the worry that her body will reject the gift inside her chest.

"We live every moment the best we can," Mike Stephenson said. "We'll face that stuff if and when it comes. We don't focus on that. We just enjoy every second we got with her."

"We've been so blessed, we can't complain," Shauntelle Stephenson said. "This girl has a purpose."

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