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February 26, 2013

A new and hopeful heart: Mother wants son to be ‘a normal kid’ now

LAUREL COUNTY, Ky. — Sara Walden wants her son to be able to act like “a normal kid,” to run and jump and play on the playground outside, but she’s overwhelmed with fears of him becoming sick again.  

On Wednesday, Feb. 13, 4-year-old Kyle Rogers returned home from Vanderbilt Heart in Nashville, Tenn., after receiving a new heart.  Kyle was on the transplant list for seven months.  

Shortly after birth, Kyle went into cardiac arrest and had heart failure.   It was a mother’s worst nightmare, Walden said.  In the space of three years, he has had four open heart surgeries and two pacemakers.

“They said his last option was a heart transplant,”  Walden said.

About two months later, he was hospitalized. Kyle was a mere 26 pounds  and very weak.

“My heart felt bad,” he said.

Kyle was confined to his hospital unit, and anyone that came in contact with him would have to sanitize themselves.  

Walden sat by his side through every surgery, every needle poke from a nurse and every temper tantrum from exhaustion.  

To make the time pass, Kyle strung a length of glass beads.  Known as the Beads of Courage, which provides the materials to hospitals at no cost, the program gives children coping with serious illnesses, such as cancer, a fun activity that also symbolizes their journey to wellness.  Each one represented his days of courage in the hospital and his surgeries.

The Make A Wish Foundation also paid Kyle a visit in September.  Spiderman came, bearing lots of presents.  He was delighted with the surprise, Walden said, but he began facing a hard reality when other children in the hospital, while also waiting for a transplant, passed away.

“While we were there, three of his friends passed away.  One was seven, one was two, and the 7-year-old he was very close to,” she said.

If a heart couldn’t be found for Kyle in time, he would receive a mechanical artificial heart, known as a Berlin Heart.  At 11 a.m. on July 27 of last year, his doctor delivered the news.  They had a heart, and it would be delivered by 6 p.m.

“I was in shock,” Walden said. “I didn’t know whether to laugh or cry.  I just ran over to Kyle, hugged him and said, ‘it’s time for your new heart!’”

Recovery from a heart transplant is no easy feat, but as soon as Kyle left the hospital, he and his mother visited the Parthenon in Nashville — a replica of the original Parthenon in Athens.

“He ran around the complete thing,” Walden said.  “He’s a lot stronger now. He is almost like a completely different kid.”

Kyle, now at a healthy weight of 40 pounds, is supposed to be in pre-school, but because of his health condition, he will be a year behind.  Walden said she plans to begin home schooling him in the fall.

“He’s been through too much for me to leave him,” Walden said.

She allows Kyle to spend 15 minutes outside everyday to play, so as not to overwhelm his new heart with too much activity. After playtime last week,  Kyle sanitized his hands and rested on his couch for a bite of a leftover sandwich.  As he watched Tom and Jerry cartoons, he lifted up his shirt and touched his crimson scars that stretched from his heart to his belly button, inspecting them like a map.  

There is still a chance that Kyle’s heart can go into rejection at any time, up until six months after his surgery.

“After six months, he will be able to travel,” Walden said.  “When those six months are over, we will take a trip to Disney World to celebrate.

Their suitcases are still packed in their home, after their extended stay in a hospital room.  It’s not like they are planning to go back to the hospital, Walden said, but they are just too preoccupied in moving forward with recovery to unpack their past hardships.

mmccrarey@sentinel-echo.com

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Now that school is out, what are your family’s summer vacation plans?

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