After double transplant, St. Petersburg child fights for future

ST. PETERSBURG

Kelly Whitten has been diagnosed with two genetic disorders, a heart defect, liver and kidney failure, partial blindness and a near-fatal blood infection — all before her seventh birthday.

She's had a double organ transplant, heart surgery, eye surgery and liver dialysis. All this has meant countless complications and infections, frequent hospitalizations, therapies and so much pain medication that she went through drug withdrawal as she recovered.

Yet one morning last week, the little red-haired girl in white capri pants and a striped top happily led her parents and some visitors to watch her play.

Carefully making her way over the colorful stepping stones in a large therapy room at All Children's Hospital, Kelly maneuvered through an obstacle course like a tiny football player. Then she stood on tip-toes to place stickers high on a mirror.

Mission accomplished, she picked a toy from a prize basket offered by physical therapist Laura Schneider.

To a 6-year-old, it's all fun. Kelly has to be coaxed from the room after an hour of exercises designed to improve balance, hand-eye coordination and depth perception affected by her vision loss, and build muscular strength compromised by months in bed.

Her parents watch her movements closely, their faces etched with love, pride and concern.

"She's doing so much better than a month ago," said her father, Stuart Whitten, 38.

The improvement, mom Connie Whitten points out, isn't only physical.

"Her little spirit has come back," she said.

• • •

Things were never going to be easy for Kelly. Her mother knew when she was pregnant that her daughter had Down syndrome, an extra chromosome that leads to a variety of physical and mental limitations. Kelly's issues included a heart defect, which surgeons at All Children's repaired before she was 4 months old.

Kelly had a bright prognosis. Better medical care and educational opportunities mean longer, happier lives for most Down kids, and the Whittens had no reason to think Kelly would be different.

"She was thriving,'' Mrs. Whitten, 38, said. "I even went back to teaching at a Montessori school and was able to take her to work with me."

What the Whittens didn't know is that both of them carry a rare genetic disorder that would prove far more dangerous for Kelly than Down syndrome.

About a year after the heart surgery, troubling symptoms emerged. "She was having a lot of urinary tract and bladder infections and had developed unusual red dots and bruising on her skin," Mrs. Whitten said.

A battery of tests revealed that Kelly had autosomal recessive polycystic kidney disease. Doctors told the Whittens that Kelly would need a kidney transplant by the age of 10.

But at age 5, Kelly's kidneys and liver were failing.

The nearest hospital that could do the transplants is in Miami, but she was turned down.

"It was devastating," said Mrs. Whitten. "We were told it was because Kelly's case was too complicated due to her heart issues and because she needed a double transplant."

Children's Healthcare of Atlanta accepted Kelly in June 2012. By then she was so sick she had to travel by air ambulance.

Dr. Stuart Knechtle, chief of transplant services at Children's Healthcare, notes it's rare for children to get double transplants, but he still thought Kelly would do well.

"Kelly has good social and medical support at home — she has wonderful parents — and functions well,'' he said.

A donor was found for Kelly on July 19, an agonizing wait for parents watching their child fade by the day. Even now, Mrs. Whitten can't talk about Kelly's donor without weeping.

"It's bittersweet. It's hard that somebody had to die for my daughter to live."

• • •

By Sept. 9, the Whittens were back home in St. Petersburg. They had a good month, then another crisis.

"She ended up getting an unusual infection in the urine and in the blood. She was horrifically sick," said Dr. Sharon Perlman, a University of South Florida pediatric nephrologist at All Children's Hospital who has treated Kelly.

In hours, Kelly went from running a fever to overwhelming shock. Because of the medication she was taking to prevent rejection of the new organs, Kelly's immune system was practically turned off.

She was put on kidney dialysis and a newer treatment, liver dialysis, which temporarily takes over the job of the liver.

Kelly spent nearly a month under sedation. Two days after she woke up, it was apparent that in the course of fighting the infection, she had lost her eyesight. Doctors discovered and repaired a detached retina in her left eye, but could do nothing for the right eye.

• • •

Kelly's eye is still red from the surgery, but she can see, and that has made all the difference.

"When she didn't have any eyesight she wasn't eating, wasn't drinking, wouldn't do anything,'' Mrs. Whitten said.

"She just sat on the couch and cried. My happy child who loved life was gone. Now she's starting to become herself again and I can't be more thankful for that."

The Whittens' days are now filled with doctor and therapy appointments and home visits from Kelly's public school teacher. Her parents hope she can start kindergarten with other children this fall.

Kelly is working hard to regain ground lost during her hospitalizations, getting back to potty training and learning to string her words into sentences.

And she's riding her tricycle and playing outside with big brother Kai, 10.

"She loves playing with her dolls and pushing them around the house in a stroller all day, playing dress-up and looking at herself in the mirror," said Mr. Whitten.

He's looking for a job to replace the one he lost as a construction project manager, and Mrs. Whitten quit teaching when her daughter's medical needs became so overwhelming. They have insurance, but uncovered health expenses are mounting.

Still, the family's biggest concern is protecting Kelly's health and her future.

"There's no reason,'' her dad said, "she won't be a happy, healthy little girl."

Irene Maher can reached at imaher@tampabay.com.

On the web: To see video of Kelly at physical therapy, look for "Links in today's Times" at tampabay.com.

Hope lives on: To read more about Kelly's journey, go to www.helphopelive.org.

After double transplant, St. Petersburg child fights for future 02/17/13 [Last modified: Sunday, February 17, 2013 10:41pm]

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