In 2014, 58 U.S. children between the ages of six and 10 received a life-saving kidney from a living donor. Evie Wentz of Whispering Pines, North Carolina, was one of them. But Evie is much more than a statistic. Her transplant journey is full of twists and turns … and a happy ending.
Evie’s story began in the spring of 2004 when she was born to adoring parents, Tyler and Heather Wentz. Big sister, Marissa, welcomed her home from the hospital. The Wentz family continued to grow with the birth of Evie’s little sister, Breanna and her little brother, TJ. Tyler and Heather were busy with their four children, but happy with their ‘normal’ life. When Evie was eight years old, things changed dramatically for this family when Evie became deathly ill, and a ‘new normal’ quickly engulfed most of their waking moments. In an effort not to forget any part of their journey, Tyler has used social media and the COTA campaign website to chronicle the family’s transplant journey. Some excerpts follow:
December 2012: Evie became deathly ill and was diagnosed with Hemolytic Uremic Syndrome (HUS), which ravaged her kidneys, pancreas, heart, and caused heavy bleeding in her gastrointestinal tract. She also contracted pneumonia and her left lung collapsed. Making matters worse, Evie became a Type 1 diabetic due to damage caused by pancreatitis. Evie spent the entire month in the Pediatric Intensive Care Unit, unable to eat or drink, requiring a BiPAP machine to breathe, receiving frequent hemodialysis and plasmapheresis treatments, and over 30 blood transfusions. As the month came to an end Evie was temporarily stable enough for the doctors to conduct an angiography where they embolized a branch of her Inferior Mesenteric Artery (IMA) and finally stopped the bleeding.
January 2013: Since Evie’s kidneys ceased to function, starting dialysis was critical. It proved difficult because the fluid surrounding her heart increased which compromised her ability to breathe and she was again oxygen dependent. Evie’s pancreatitis resolved, and after six weeks of only dreaming about food, kidney failure side effects led Evie to discover nothing tasted as she remembered. Many favorite foods were now forbidden. Sadly her medical schedule made it painfully difficult to ensure Evie had the opportunity to eat three meals a day, and her dietary restrictions made it agonizing to acquire appropriate food. Physical therapists worked with Evie to combat muscle atrophy and potential bone loss due to the prior six weeks when she had been bedridden. She progressed from being unable to stand to walking 10 steps unaided before resting. After several weeks, Evie finally escaped the PICU and was stable enough to attend the hospital school. At the end of the month she was declared officially as having stage 5 kidney failure, and a peritoneal dialysis catheter was placed.
February 2013: Evie became truly stable in February and successfully kicked her supplemental oxygen requirement. She also had her NG-tube removed and had a more permanent G-tube placed. Near the middle of the month she was finally discharged; however, we spent another week away from home at an offsite dialysis center where we received training on how to perform peritoneal dialysis from home. Every night Evie spent 10 hours connected to the miracle machine that kept her alive while she hoped for the chance to have a kidney transplant.
April 2013: We went on a family trip over spring break that was scheduled and paid for prior to Evie getting sick. We drove nine hours each way in a car packed to the gills with medical supplies. Evie returned to school after a 20+ week hiatus and celebrated her 9th birthday.
May 2013: Evie’s second baby brother, Zachary, was born, bringing the family total to seven — two parents, five children, queens over kings.
June 2013: School ended and Evie was blessed to spend a week at Victory Junction, a camp for kids with severe medical problems. We were notified she was considered healthy enough to be listed on our local transplant registry. According to a deal Evie made with me, I began growing a beard that would not be cut until she received her transplant.
July 2013: Evie developed an umbilical hernia early in the month, and was scheduled to have surgery to repair it. However, her nephrologist made changes to Evie’s dialysis regimen to decrease the odds of her hernia getting worse and indefinitely delayed the hernia repair surgery. We flew West for two weeks to visit family. To do so, we shipped 300+ pounds of medical supplies and checked 12 bags to maintain Evie’s dialysis requirements.
August 2013: Evie went back to school to start the 4th grade. The Saturday after her first week of school the hospital called to let us know of a deceased donor kidney — Evie was a potential match! After 16 hours of blood work, other lab work, x-rays, ultrasound, dialysis, and a CT scan, it was determined transplant could not occur as they believed Evie had some type of infection. That turned out not to be the case but better to err on the side of caution.
September 2013: Evie’s facebook page (www.facebook.com/KidneyForEvie) launched, in hopes of finding more people with the right blood type to be tested as potential living donors. Meanwhile, Evie began the process to be ‘dual-listed’ on a nearby region’s transplant registry. As a result, this was a month of way too many doctor appointments. She had her 18th & 19th echocardiograms, which unfortunately showed the left ventricle of her heart was problematic again. Evie was seen by three different cardiologists in six days. At the last appointment, we heard for the first time that if Evie’s heart function continued to decline, we would be faced with the possibility of needing both a kidney and a heart transplant. As a separate issue, Evie’s blood work indicated her prior immunizations were not doing the trick so she had to be re-immunized for chicken pox, measles, mumps, rubella, and hepatitis. Until both the heart and immunization issues were resolved, she could not be dual listed, and Evie’s status on our region’s transplant registry was changed to ‘inactive.’
October 2013: Evie’s 20th echocardiogram indicated increased function of her left ventricle, which was fantastic news. We also received confirmation she was now effectively immunized. We received word that barring an abnormality, she would be dual-listed within a few weeks on the next closest region’s transplant registry.
November 2013: Although it may sound odd, we celebrated the one-year anniversary of Evie getting sick. It was incredible to be reminded just how close we came to losing her. Another milestone, we officially joined the Children’s Organ Transplant Association (COTA) family. Evie was officially cleared to transition back to active status on the transplant registry, and was dual listed on both transplant regions.
December 2013: Early in the month Evie had a great time participating in various Christmas parties, singing in a Christmas program, watching a Christmas parade and enjoying the season. Later in the month, Evie took the three-hour round trip journey to the hospital four times. She had two possible transplant opportunities, but no new kidney. The COTA in honor of Evie W campaign started the month with zero dollars raised toward the initial goal of $45,000, but by Christmas more than $9,000 had been raised for transplant-related expenses. Our family of seven gratefully spent Christmas at home and simply hung out. To use a phrase from our kids, “This was the best Christmas ever!”
January 2014: While hoping for the miracle, we started using the Facebook page to share thoughts about certain causes, such as blood donation, organ donor registration, and serving others. Halfway through the month we found out that our friend from church, Evie’s Sunday School teacher, had made it through the living donor screening process and she was considered a good match. They scheduled a date for Evie’s living donor transplant surgery, which was February 18, 2014.
February 2014: The rollercoaster of life continued its highs and lows, peppered with twists and turns. Two weeks before her scheduled transplant date, Evie spent the day at the hospital, and all the tests came back with results confirming that she was good to go. Everything looked good; it was now just a matter of keeping Evie healthy and germ free.
Early on the morning of February 18th as Evie waited in her hospital bed, her living donor’s husband stopped by to give Evie some words of encouragement. When the surgeons came to take her back to her operating room, there was no nervousness, no timidity, and when they asked her if she was ready, she jumped off the bed. She disappeared after a friendly wave back at us. The transplant was an absolute success! Evie’s new kidney (which she promptly named ‘Gus-Gus’) was a miracle for her little body, and her creatinine and blood, urea, nitrogen (BUN) levels immediately dropped to normal levels.
EPILOGUE: Our wonderful COTA in honor of Evie W volunteers were able to surpass the initial fundraising goal of $45,000 in less than six months. Their dedication provided so much strength and hope as we dealt with the stresses of severe medical issues. Life post-transplant has not been as easy as we had dreamed it would be, but regardless of the bumps in the road, we have witnessed numerous miracles and have been incredibly blessed.
Today at age 12, Evie is doing well post transplant. She is vibrant and happy. She loves listening to upbeat rock music, playing with Legos, riding her bike, swimming and pretending to be a monkey on the monkey bars. When asked what hopes she might have for the future, Evie’s litany included: learn how to play the flute, get a 3D printed kidney that cannot be rejected, compose music, go to college, be a doctor, get married and have my own kids.
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.