KIDNEY STORIES: A KIDNEY FOR CHRISTMAS

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A kidney for Christmas: Teacher gives a child a special gift

       

Monday December 23, 2013 12:01 AM
  By   Ron Devlin      
What you can do

Become a donor

You can become a potential organ donor when you obtain or renew your driver’s license. When you visit any PennDOT photo license center, you can choose to have the organ-donor designation printed on your card. For more information on organ donation, contact the Gift of Life Donor Program at 888-366-6771.

Follow Katelynn

Katelynn has a Facebook page: Katelynns Kidney Journey

A timeline of healing

  • Sept. 12: Substitute teacher Cindy Santos meets Katelynn Ernst, 5, in kindergarten class at Fleetwood’s Richmond Elementary School, Richmond Township.
  • Sept. 25: Cindy contacts Vicky Reilly, living donor transplant coordinator at Hershey Medical Center.
  • Oct. 24: From Days Inn in Hershey, on the eve of final testing as a potential donor, Cindy emails Katelynn’s parents, Chris and Alicia Ernst of Maidencreek Township. It’s the first time the Ernsts were made aware that Cindy, who lives less than a mile away, was a candidate to donate a kidney to their daughter.
  • Oct. 25: Cindy undergoes 10 hours of testing at Hershey.
  • Nov. 29: The day after Thanksgiving, Cindy receives a call at her parents’ New Jersey home saying she’d been accepted as a donor. The Ernsts get a similar call, notifying them Cindy would be the donor.
  • Dec. 2: Cindy undergoes pre-op testing in the morning at Hershey. Katelynn is scheduled for pre-op testing that afternoon. After completing her testing, Cindy is standing on the sidewalk outside the hospital when the Ernsts drive by in their minivan. They stop and, for the first time, meet their daughter’s donor.
  • Dec. 10: Transplant is successfully completed at Hershey.
  • Dec. 13: Cindy returns home.
  • Dec. 18: Katelynn returns home.

The moment Cindy Santos laid eyes on 5-year-old Katelynn Ernst again, she wrapped her arms tightly around the child.

In the foyer of Katelynn’s Maidencreek Township home Friday, they clung to each other with an intensity that sprang from a special relationship.

Indeed, Santos, 45, a substitute teacher in Katelynn’s kindergarten class at Richmond Elementary School, had given her student a most precious Christmas present: a kidney.

On Dec. 10, in adjoining operating rooms at Penn State Milton S. Hershey Medical Center, surgeons removed Santos’ left kidney and transplanted it into Katelynn.

The nine-hour procedure was successful, and both donor and recipient are recovering.

On their first meeting after Katelynn came home from the hospital, Santos gazed in amazement at the child to which she always will be linked, physically and emotionally.

“Look at you, you’re beautiful,” Santos said. “Does you tummy hurt? Mine doesn’t anymore.”

Chris and Alicia Ernst, Katelynn’s parents, could hardly contain their emotions.

For more than three years, they had ridden an emotional roller coaster while awaiting word that a kidney had been found for their ailing child.

With virtually no kidney function, Katelynn was on dialysis 10 hours a day, seven days a week.

How long she could survive on a regimen of 13 medications to stave off the effects of the disease and the treatment was uncertain.

Then, out of the blue, came Santos, whose compassion freed their daughter to live a normal life.

Arriving at Christmas, the season of giving, the life-sustaining gift had spiritual overtones.

“I believe,” Alicia said, “God sent her to us.”

Providential meeting

Santos first met Katelynn on Sept. 12, when she was called in to substitute for kindergarten teacher Pam Loughery.

Doreen Green, Richmond’s school nurse, alerted her that there was a child in the class who was on kidney dialysis.

From their first encounter, something deep down stirred in Santos as she contemplated one so young battling so grave an illness.

“The first time I met her, she made an impression on me,” Santos recalled. “This quiet little girl, who’s only 5 years old, had already been through the wringer.”

A week or so later, by accident, Santos came across Katelynn’s Kidney Journey page on Facebook.

At first, she didn’t make the connection between the Katelynn on Facebook and the Katelynn she’d met in class.

Still, something made her scan the page, which listed the health-related conditions for qualifying as a donor.

“That’s me,” she said to herself.

She emailed Hershey Medical Center, beginning a three-month process that would change the lives of both teacher and student.

In her living room, sitting beneath a wall hanging that reads “Faith, Believe, Love,” Santos turned reflective.

“I still find it amazing that there’s part of me inside her,” she said. “I still can’t wrap my mind around it. It’s surreal.”

A child’s misfortune

Katelynn was only 22 months old when she came down with what the Ernsts thought was the flu in June 2010.

Then she went into seizure and was rushed to Penn State Milton S. Hershey Medical Center, where she was put on a ventilator.

At first, doctors thought it was meningitis.

Further testing isolated exposure to E. coli bacteria as the cause of hemolytic uremic syndrome, which causes kidney failure in children. How Katelynn was exposed has never been determined.

On her second birthday, Katelynn had 30 percent kidney function, which went steadily downward. In August 2012, doctors told the Ernsts their daughter would need a kidney transplant, soon.

Because of diabetes, family members were ruled out as donors. The Ernsts turned to Facebook in search of a donor.

Some 25 people, including a man from Oklahoma who’d lost a son to kidney disease, responded. For one reason or another, all proved to be unsuitable donors.

On one occasion, the Ernsts rushed Katelynn to Hershey when a deceased donor had been found. Doctors were readying Katelynn for surgery when the donor’s kidney proved deficient.

“It’s an agonizing process,” said Chris, 31, a Santander Bank financial analyst. “One day you’re up, the next you’re down.”

The Ernsts had just about given up hope when, on Oct. 24, Santos emailed them from the Days Inn in Hershey with the news she was to go through final testing the next day.

The Ernsts had known there was a living potential donor, but they did not know whom. Nor did they know it was one of Katelynn’s teachers who lived less than a mile away.

“We were on our way home from Target when we got the news,” recalls Alicia, 30, a stay-at-home mother of four children. “I just bawled my eyes out.”

Good news at last

Santos had only taught Katelynn once and tutored her a few times, but was drawn ever closer to the child.

“When I was at school, I’d have lunch in the nurse’s office and Katelynn (came) in for her meds,” Santos recalls. “Every time I saw her, something built in me.”

Not wanting to raise the Ernsts’ hopes, she kept her testing secret. At each stage of the rigorous process, she could have been disqualified as a donor.

Santos relied on her family for strength.

Her husband, Matt Santos, and their children – Casey, 18; Brett, 16, and Evan, 12 – were supportive. So were her parents, Walter and Bernadette Stupinski of Toms River, N.J.

“At first, she didn’t tell us,” said Bernadette, a retired court clerk. “We were dumbstruck, but now we couldn’t be prouder.”

Cindy Santos’ brother, Air Force Maj. Danny Stupinski was speechless when he first got the news.

Later he emailed from the Middle East, saying, “She’s doing a wonderful thing, giving this little girl a new lease on life.”

The day after Thanksgiving, at her parents’ home, Santos received the long-awaited call from Hershey’s transplant coordinator Vicky Reilly that she’d been accepted as a donor.

“That’s when I realized,” she recalled, “that this thing was going to happen.”

Chris Ernst got the news from Hershey the same day.

“Are you sitting down?” Reilly asked. “Mrs. Santos is going to be your daughter’s donor.”

On Dec. 9, 11 days later, Katelynn would undergo her last dialysis treatment in the Ronald McDonald House in Hershey. The next day she would receive a new kidney.

The Ernsts breathed a sigh of relief when, while their daughter was still in recovery, they witnessed concrete evidence the surgery had been successful.

“When we saw (her urine) trickling into the jar,” Alicia recalled, “we cried.”

The right thing

Glowing with pride, Santos said she feels like a new woman.

She’s healing, physically and emotionally.

“There was a little girl less than a mile from my home, and she needed something I could give her,” she said. “It was the right thing to do.”

There was something unexpected in it for Santos.

Testing revealed she has pelvic congestion syndrome, a potentially serious condition linked to varicose veins in the lower abdomen. Removal of the kidney, doctors say, could prevent surgery as she ages.

“That was my this-is-something-you-should-do bonus,” Santos said.

Being a parent, she put herself in the Ernsts’ shoes. What would happen if one of her boys were in the same situation as Katelynn?

“God forbid, if one of our boys needed a kidney and we couldn’t help, I hope somebody would step up and donate one,” she says. “I’m confident that they would.”

Being Katelynn

The Ernsts realize Katelynn’s body could reject the kidney at any time.

They’re hopeful that she will grow up to be a mother, a teacher or maybe even a doctor.

“Given her experience,” Alicia said, “I’d like to see her work in the medical field.”

Santos hopes Katelynn will grow up strong and happy and live a fulfilling life.

For now, though, it’s enough that Katelynn will have the chance to be a child.

“I just want her to be able to live the life of a normal 5-year-old,” Santos said.

That’s fine with Katelynn, whose dubbed her new organ “Cindy the kidney.”

Right now, Katelynn’s main goal in life is to go to Disney World and meet her idol, Princess Belle.

Contact Ron Devlin: 610-371-5030 or rdevlin@readingeagle.com.

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