TERRE HAUTE —
When 7-year-old Katelyn Newell’s health continued to deteriorate, her cardiologist made a decision.
“It’s time to get the process started,” he told Katelyn’s mother, Robin Newell, in early August. As of Thursday, Katelyn is on a list to receive a heart transplant, and Newell has been given a pager.
“As soon as I get the page, we’re out” and en route to Indianapolis, Newell said Friday, but they don’t know when that might happen. Katelyn, a second-grader at Deming Elementary, is a patient at Riley Hospital for Children.
Katelyn was born with complex congenital heart disease, her mom said. She was born without a valve and underwent three surgeries to correct it. Except for a stroke when she was 31⁄2 years old, Katelyn had been very healthy until last fall.
Now, she suffers from bradycardia, in which her heart beats very slowly. Katelyn’s coronary arteries are not developing as they should, and her doctors have determined she needs a heart transplant.
When the pager goes off, it will mean a donor heart is available. “I’m excited and nervous both,” Katelyn’s mom said. “Once she has the new heart, they’re going to consider her a normal kid. She will no longer be disabled. She’ll be able to do anything that any other kid could do other than contact sports.”
Katelyn’s health has continued to worsen the past year. She is weak and turns blue constantly, her mom said. The cardiologist said that with all the medications Katelyn is taking, “She should be acting like a normal 7-year-old and she’s not.”
Much sooner than the family anticipated, they are preparing for the 7-year-old to undergo major surgery.
Katelyn, who has a pacemaker, continues to go to school each day, but she is in a wheelchair because she tires easily. She also has a “rest time” during the school day.
“We look forward to the day when she can get up out of her chair and run like all the other children in her classroom,” said Deming Principal Susan Mardis.
Katelyn will be recognized and serve as the inspiration for a Deming School blood drive from 2 to 6 p.m. Sept. 24 in the school gym. The school community and public are welcome to attend and donate blood.
The past few weeks, the family has been dealing with health insurance matters, and Katelyn has had all kinds of blood work, Newell said.
Katelyn’s grandmother will work with the Children’s Organ Transplant Association to conduct fundraisers for transplant-related expenses not covered by insurance. Newell said they anticipate they will need financial assistance with anti-rejection medications that Katelyn will have to take after the transplant.
Newell said her daughter “knows she’s getting a new heart,” and Riley has provided a book for Katelyn and her brothers to read that will explain it in terms they can understand.
Katelyn can walk around at home, but if they go to the store, she needs a cart or wheelchair. “She complains of her muscles hurting a lot, her leg and arm muscles,” Newell said. On occasion, Katelyn has belly pains.
Newell said her mind is “constantly racing” as she thinks about doctor’s appointments, the transplant and her several other children at home. “I’m used to being at home with them, but I can’t be both places.”
Her finance, Scott Moody, is a manager at a downtown Terre Haute restaurant.
When the transplant takes place, Katelyn will be in the hospital at least two weeks and then she and her mom will be in a Ronald McDonald apartment for another six to eight weeks. When Katelyn returns to Terre Haute, she’ll be in isolation at home for at least three months, Newell said.
Mardis said Katelyn “always has a smile, but she tires easily.” Early in the school year, Katelyn was walking to the bus, and she told her principal, “I can’t go anymore. My chest hurts.”
Mardis picked the child up, sat her down on a bench and called her mother. Now, because she is in a wheelchair, Katelyn rides a special bus home.
Katelyn’s second-grade teacher, Sandra Childress, said the delicate blonde “is such an inspiration.” The 7-year-old always smiles and never complains, Childress said.
Her lips were “so blue” one day, but Katelyn wanted to stay at school. “She’s a trooper,” Childress said, and her classmate are concerned about her and look out for her.
At some point, Childress hopes to have a health expert talk to the class about heart transplants so they have a better understanding of what will happen. “They get nervous. They worry about her,” Childress said.
On Friday, Katelyn rested in a comfortable room that teachers have decorated for her and another child with serious health problems. It has bright blue and orange bean bag chairs, a rocking chair, books, books on tape and stuffed animals. It also has paper cutout stars, since the school’s theme is the Deming Stars.
“I get to sleep in a bean bag chair,” a happy Katelyn told those around her. One of the books she’s excited about is titled, “If you Give a Mouse a Cookie.”
She also confessed she’s a huge Justin Bieber fan.
This weekend, the family will continue its wait for a new heart for Katelyn.
“I’m ready for her to be healthy. I’m so ready,” Newell said.
Sue Loughlin can be reached at (812) 231-4235 or sue.loughlin@tribstar.com.
News
Related Photos
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Voice of experience: Deming Elementary Principal Susan Mardis tells second-grader Katelyn Newell of how she tutored another youngster that needed a transplant Friday after school. (Tribune-Star/Joseph C. Garza)
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Tribune-Star file photo/Joseph C. Garza Donation conversation: Katelyn Newell, here as a Deming Elementary School first-grader, talks with her teacher, Susan Cox, as Cox donates blood during a blood drive Monday, April 30 at the school. School administrators are planning another blood drive for Newell.
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Tribune-Star/Joseph C. Garza At any time: Robin Newell keeps the pager from Riley's Children's Hospital with her at all time since a call could come at any time to start her daughter Katelyn's transplant.
Discussion
At moment’s notice, Katelyn, 7, will be on her way to get new heart
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