Keeping ‘hope’

Timely kidney transplant lifts Williamsburg girl

Mirror photo by Gary M. Baranec Caitlin Deters talks about receiving a second kidney transplant.

By Greg Bock

When 12-year-old Caitlin Deters of Williamsburg was adopted in mid-December, she not only took on a new last name, but she decided to change her middle name to Hope, as well.

Less than two weeks later, on Christmas Day, Caitlin received a surprise gift — a desperately needed kidney.

After waiting 18 months, the family received word from doctors at Children’s Hospital of Pittsburgh of UPMC just before midnight on Dec. 23 that they had a potential match. Even then, the couple didn’t have high hopes; there was a good chance the kidney — from a 28-year-old on life support — wouldn’t be a match for Caitlin.

It also meant Caitlin had to go into a hospital hours away from home on the morning of Christmas Eve.

“I was upset because I wanted to stay here for Christmas,” Caitlin recalled last week as she talked about her journey.

And it’s been quite a journey for Caitlin and her new family.

Caitlin’s need for a kidney transplant was because of bilateral reflux nephropathy, a condition where her urine flowed backward from her bladder to her kidneys. In July 2014, she received an initial transplant.

Two years ago, Caitlin’s life was nearly cut short because of neglect and abuse. She almost died when the kidney she received in 2014 stopped working after her biological mother failed to give her the anti-rejection drugs she needed on a daily basis.

That neglect cut short the life of her new kidney, from the typical 10 years to just a 18 months.

Wendy and Troy Deters took Caitlin into their home — where they have two other adopted children — as a foster child in February 2016, just after Caitlin spent a month in the hospital when her first transplanted kidney’s functioning level plummeted to close to zero a month earlier. Her biological mother, Nicole Kissell, was not permitted to see Caitlin and was eventually charged by state police over the neglect in late 2016. In July of last year, Kissell died.

Caitlin keeps a small urn containing some of her mother’s ashes, but because she was so sick for so long, there is much she doesn’t remember about those years.

“I tried to stay happy,” Caitlin said of how she has dealt with everything that has happened in her young life. She said going to school, being with her friends and spending time with her adopted siblings while trying to be a regular kid has helped get her through it all.

For the Deters, it was not an easy decision to adopt Caitlin. The couple had already raised two children of their own, who are now in their 20s. Troy, who is 48, and Wendy, 47, also have two grandchildren. When Caitlin came to live with them as a foster child, they had two other adopted children who are now ages 14 and 7. Initially, they didn’t know if they could handle it emotionally given Caitlin’s relatively grim prognosis after her first transplanted kidney stopped working.

“Troy didn’t know if he could bear burying a child,” Wendy Deters said, noting that the month before Caitlin came to live with them, his father had died. “Then in August, Caitlin and I were at a clinical. Her health went downhill. We came home, and Troy and I talked.

“I said, ‘Troy, we’ve got to do something,'” Wendy Deters said, pointing out that because Caitlin was a foster child, she wasn’t eligible to get a transplant.

So after a court hearing, a Blair County judge cleared the way for the couple to adopt Caitlin on Dec. 12.

It was then that Caitlin made the decision to also change her middle name from Nicole to Hope.

“It makes it happy,” Caitlin said. “There were not happy memories with the old middle name.”

It wasn’t long after adopting Hope as her middle name that what Caitlin and her family had been hoping for suddenly became a reality.

Wendy Deters said they had not had a chance to even supply Children’s Hospital with a vial of blood that would be needed to test for a match, but because the 28-year-old donor was being kept on life support, it gave them enough time to take Caitlin straight to Pittsburgh to find out.

“Each time you get one, you build antigens up,” Wendy Deters said. “So it gets harder and harder to match you.”

Given the protocols for organ donation and because donated livers and pancreases are transplanted with accompanying kidneys, the fact that Caitlin was able to get a second matching kidney was nothing short of a miracle to the Deters family.

“Shocked, elated and scared,” Troy Deters said, describing his emotions when he learned the transplant was happening. A paramedic with the Hollidaysburg American Legion Ambulance Service, Troy Deters had to deal with a mandatory shift on Christmas. Wendy Deters said while the family was happy to get the news, the timing over Christmas made it especially challenging.

It was also tough knowing that someone had to lose a loved one in order for Caitlin to get her kidney.

“It makes you feel guilty,” Troy Deters said. “We’re out there celebrating while some family out there lost someone.”

His wife pointed out it also meant there are other kids who need a kidney that didn’t get one this time, which really hammers home the need for organ donors.

After coming out of the five-hour surgery about 3 p.m. on Christmas Day, Caitlin spent nine days in the pediatric intensive care unit before coming home to recuperate.

Now that she is off prednisone and about a dozen other medications she needed before the surgery, Caitlin is down to five or six medications a day. Wendy Deters said she noticed an immediate difference in how Caitlin looked when she was in ICU.

She’ll need to drink more water than a typical person, especially in the beginning, and a kitchen timer reminds her to drink a cup of water every hour. Wendy Deters said Caitlin has no problems taking her daily medications, and she’s down to having to get blood work every two weeks instead of weekly. There will be regular checkups with her doctors, and her medication levels will change weekly as they work to find the right dosage to ward off rejection.

“We’re hopeful,” Wendy Deters said. “God didn’t bring her through this for nothing.”

On Monday, Caitlin returns to school and said she is looking forward to seeing her friends and getting back to cheerleading and swimming and all the other things a typical kid likes to do. Her new kidney is positioned in the front of her abdomen, so she’ll have to wear a guard when doing some activities to keep it protected, and there will still be some things she just won’t be able to do — such as jump on a trampoline — but overall she’ll be able to live a normal life.

“I want to grow taller to be able to go on more rides,” she explained. Because of her kidney problems, she’s smaller than the average 12-year-old. So now she hopes to start growing so she can ride all those amusement park rides that for now she can’t ride because she’s too short.

It also means she can go back to eating some of the things she loves — like chocolate.

“Any chocolate,” Caitlin said, laughing, when asked what was her favorite.

Now in the sixth grade, Caitlin is working to catch up a bit with school. While she didn’t miss much school in the fifth grade, her illness did mean she missed a lot of school during the first four grades.

Someday, she said, she wants to be a nurse.

“So I can help people,” Caitlin said. “I want to be the person who tells them if they don’t do this or that, something may happen to you.”

Mirror Staff Writer Greg Bock is at 946-7458.