A Kidney for Evie

When 9-year-old Evie was admitted to N.C. Children’s Hospital for kidney failure in December 2012, her care team fought not only to stabilize her but to determine what caused her condition. What started as a fever, diarrhea, and vomiting had led to a seizure and, soon thereafter, a life flight to UNC.

Doctors soon diagnosed Evie with atypical hemolytic uremic syndrome, a rare condition affecting about one in 500,000 people in the United States. The disease, often acquired by a foodborne illness, destroys red blood cells and, in a small number of cases, can lead to chronic kidney disease. Evie spent almost three months inpatient undergoing dialysis and other therapies to treat her failing kidneys.

When Evie was discharged in February 2013, her parents, Tyler and Heather, learned how to administer dialysis to Evie at home, a treatment she would need every night. She would eventually need a kidney transplant, but they would have to get her well enough before her name could even be added to the list.

As they chronicled in their blog, the parents went to great lengths to ensure they were taking the proper precautions to avoid infection. Tyler wrote:

Evie is connected to a [continuous cycling peritoneal dialysis] machine each night for 10 hours. It takes me half an hour or so to set it up and about as long each morning to take it down. To avoid giving her an infection:

  • I turn off all heating/air conditioning 30 minutes prior to and while connecting or disconnecting.

  • Anyone present in her room at the time must wear a mask.

  • The door to her room must remain closed.

  • I wash my hands with anti-bacterial soap for a few minutes, then use Nitrile gloves which have been covered with hand sanitizer.

  • I disinfect the room (and every doorknob and light switch nearby) with a bleach water solution once a week.

Evie and her dad visit with her nephrologist, Dr. Maria Ferris.
Evie and her dad visit with Dr. Ferris, her nephrologist.
It was a nightly routine the family would endure for a year, and it took a full six months of at-home dialysis before Evie was well enough to be listed on the kidney transplant registry.

After getting on the registry, Evie received an outpouring of love. More than 30 people contacted UNC to initiate the process of finding out if they might be a match as a living donor. And as luck would have it, in January 2014, the Wentzes learned that one of those selfless individuals, a mom of three from the family’s church, was the right match for Evie.

“I spoke with the Wentzes as soon as I received final approval,” said donor Jennifer in an interview with The Pilot, Moore County's local paper. “The family seemed excited beyond belief at the news, but they were very concerned with making sure that I was all right with this decision.

“The answer to that is that it was an easy decision. I am ecstatic to give this little girl her childhood back, and I am honored to have been chosen by God to do this for her.”

Evie back in schoolOn February 18, 2014, Evie received her new kidney, which she fondly named Gus-Gus. Her recovery went well and she returned to her home in Moore County on February 25, just one week post-surgery. It is expected Evie's new kidney will last five to 10 years, meaning Evie will likely need more transplants during her lifetime.

For now, though, the family is grateful to be home together and for the donor who gave Evie a new kidney and new chance at life. Evie's making the most of that new chance, her latest triumph being able to return to school on April 22.

She and her family also advocate for organ donation for the more than 2,000 children and 120,000 adults in the United States who need a transplant.

“Nearly 7,000 people died last year because one of their organs failed, and a suitable donor was not found in time,” wrote her parents via their "A Kidney for Evie" Facebook page. “Each of us has the power to make a difference, to fix this problem by registering as an organ donor.”

You can get more information and register as a donor in Evie's honor by visiting Donate Life North Carolina online.

Evie in the News

 

 

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