We’re honored to be ranked among the nation’s best children’s hospitals for kidney care by U.S.News & World Report. Not for the shiny badge, but for Evan, and the countless kids like him who inspire us to keep climbing higher. Learn more about Evan and why he’s shouting from the rooftops!
Doctors suspected something was going on with Evan’s kidneys before he was even born. An early ultrasound showed they were enlarged and additional testing showed diminished amniotic fluid, a sign that his kidneys weren’t functioning properly.
Evan was diagnosed with cystic dysplasia, a condition that results from problems occurring as the kidneys are forming. Kidneys filter harmful substances in the blood (toxins), and it can be life-threatening when they don’t work properly. “With kidneys that are full of cysts, there’s not enough kidney tissue to filter the blood which causes toxins to build up in the body,” nephrology nurse educator Jules Goble explains. “Eventually this causes kidney failure.”
After spending the first few days of life in the neonatal intensive care unit, Evan’s treatment plan included regular blood draws to monitor his kidneys and checkups every three months with a nephrologist (kidney doctor). “The treatment and monitoring allowed his kidneys to ‘hold steady’ functioning at about 40 percent,” said Evan’s mom, Sarah.
Life changed in April 2016 when 5-year-old Evan and his mom were headed to register for kindergarten. “I noticed Evan didn’t look right,” said Sarah. “He was puffy, and at first I thought it might be allergies, but when I hugged him I noticed his abdomen was bloated.”
Puffiness and bloating were signs that despite his treatment regimen, Evan’s kidneys were no longer holding steady.
Dialysis designed for kids
For Evan and his family, the timing of the opening of the Children’s Pavilion – and its dialysis pod – couldn’t have been better. “Thank God CHoR built this Children’s Pavilion when they did,” Sarah says. “Construction started around the time Evan was born and it was ready when we needed it.” Evan was the second child to start dialysis in the Pavilion.
Once it was officially determined that Evan could no longer maintain a safe level of kidney function with medication, he began undergoing dialysis. Using a specialized dialysis (blood filtering) machine, hemodialysis does the job kidneys aren’t doing: removing waste and excess fluid from the blood and restoring important chemicals to the body. “The process of dialysis is like a big filter for the body,” Jules explains. “Dialysis takes blood out, filters it, and puts filtered blood back in.”
Sarah was relieved to have a facility close to their Mechanicsville, Va., home as Evan needed dialysis three times a week. She was also thankful to be able to bring her child to a place just for kids. Not only is a kids-only dialysis facility more family-friendly, is has a reduced risk of infection, compared with an adult facility, as adults undergoing dialysis are more likely to have other conditions they could pass along. “Before the Pavilion opened, Evan would have been going to an adult dialysis center,” Sarah explains. “For kids, it’s just their kidneys; otherwise they often feel OK. Adults are much more ill.”
The entire Children’s Pavilion is designed for kids and the equipment is kid-sized – including the machines used for dialysis. The dialysis pod has the Pavilion’s best view of Richmond’s skyline with a wall of windows easily visible from the dialysis stations. This layout was part of a strategic treatment-space design for patients required to sit for long periods of time attached to equipment.
For just about a year, Evan came every Monday, Wednesday and Friday for three-hour dialysis treatments. Despite his positive attitude, sitting still for so long was challenging. Evan lists “climbing” as his favorite activity with trees, playground poles, furniture, and even walls and stacks of pillows, among his favorite options. “He really likes to be active” Sarah says.
Playing video games helped pass the time for Evan, as did making new friends, including a dialysis tech who got to know Evan then often spent his own time playing games with him. “It was so special,” Sarah says of the time he and Evan spent playing together during dialysis. “We also really got to know the nurses – and they are amazing – and the other kids and families too.”
Evan inherited a love of music from his dad and says visits from the music therapist, who came to sing and play instruments as he and other patients underwent dialysis, were some of his favorite CHoR memories. “Around the holidays, we sang holiday songs with the kids and other families and we were so loud and happy that patients from other parts of the hospital came and joined in.” Sarah recalls. “The staff tries to make it a fun experience and are really encouraging and really loving.”
New kidney – new life
When Evan started dialysis, his nephrology team put a plan of action into place and began planning for a kidney transplant. “Dialysis is more of a band-aid,” Jules explains. “It doesn’t solve the problem. A kidney transplant is nearly always the answer for a kidney condition.”
For medical reasons, neither of Evan’s parents were able to donate a kidney and it was also determined that no other family member was a match. It then took several months to find a kidney as Evan has a rare blood type so finding a match was more difficult. Eventually, however, they were able to coordinate a unique chain transplant “swap” with a family member donating one of their kidneys, which made it possible for someone in California to give Evan a kidney.
Evan received his new kidney on April 5, 2017. Following a week of recovery in the hospital, he was discharged home and since then “he’s done really well,” according to Jules. “His parents are incredibly compliant, closely following everything they are required to do, which is very important post-transplant,” she adds.
Evan now comes to the nephrology clinic two to three days each week for checkups, blood tests and monitoring. During checkups, they meet with the team’s dietitian who helps ensure Evan’s diet is as kidney-friendly as possible. They also meet with nurses and other team members who provide education in managing medication (Evan takes 10 different anti-rejection medications every day to ensure his body accepts the new kidney.); identifying transplant complications; and the other important things they need to do to help ensure Evan’s kidneys are functioning. These visits will lessen in frequency over time and the team is available 24 hours-a-day if they have questions or concerns.
“It takes a team to care for kids with complex pediatric kidney disease like Evan,” said Timothy Bunchman, MD, professor and chief of the Division of Pediatric Nephrology at CHoR. “Our team includes kidney doctors, nurses, dietitians, nurse educators, social workers and a full complement of pediatric specialists who rally around a child to take care of the entire family and community that supports them. We see improved outcomes and happier families with this comprehensive approach to care. That’s the true reflection of our commitment to our kids and their families.”
Throughout Evan’s medical journey, one of the things Sarah has appreciated most about Evan’s care team is their efforts to help him build confidence for the challenges of a condition that requires so many tests and treatments: “This thing is still scary, still painful. They provide special encouragement when he needs to do something that’s scary or that hurts. They are very aware that these are kids.”
“From the moment he walked into the ER scared because Evan was so sick – to the time of his transplant – we knew we were in the best hands,” said Evan’s dad, Robbie. “The national ranking is really well deserved but we already knew we were getting the best care for our son.”
CHoR’s partnership with VCU’s Hume-Lee Transplant Center contributes to the national ranking and to successful outcomes like Evan’s.
“VCU’s Hume-Lee Transplant Center is privileged to have been part of Evan’s care team and to have organized a complex donor-kidney swap that changed Evans’s life for the better,” said Marlon Levy, MD, Division chair of Transplant Surgery at VCU Health. “Delivering expert pediatric transplant care for the patients of CHoR is a core mission for our team.”
The Center prides itself on being the “first choice in second chances.” For Evan, that second chance came just in time for summer fun!
Just in time for summer fun
With dialysis behind him, Evan has more time for climbing and enjoying other childhood fun. Jules – and the rest of his care team – are thrilled to see Evan getting back to being active. “He’s a wonderful child and a typically active 6-year-old, and it’s hard being tied to a dialysis machine three days a week,” she says. “Now he can be an active kid. We’ve seen a really good change in him since he got his new kidney – he just looks and feels better.”
Evan was required to stay home from school and day care for six weeks around the transplant procedure to suppress his immune system to reduce the chance of his body rejecting the kidney. Soon after coming home from the hospital, Sarah says he was “climbing the walls” having to stay at home. “He really wanted to try to see friends. He was really ready to get back to school.”
Evan was able to return to his kindergarten class on May 17, 2017. Though he was not yet allowed to sit too close to other kids due to infection risks related to the new kidney, Sarah says was very excited to be back. He’s also able to be at school for more full days now that he no longer needs dialysis.
For an energetic boy who has spent so much of his childhood undergoing medical procedures, one of the things Sarah is looking forward to this summer is more time and more freedom for Evan to experience the joys of outdoor fun. Last summer, Evan was unable to get the dialysis delivery device implanted in his skin wet, so he couldn’t go to the pool, play in the sprinkler or help his dad wash the car. Their family is very much looking forward to doing all these things – and more – in the coming months. And until then, they’re capitalizing on the timing of his transplant with a new outdoor activity they all enjoy together: daily water gun fights.
For Sarah, seeing her son able to run around the yard with a water gun in hand is a wonderful real-life benefit to the transplant and to Evan’s recent progress and the care he received at CHoR. “This program – and the timing of Dr. Bunchman building the team – has just been a godsend for us.”
More about Evan – fun facts
For fun: Climbing
Favorite food: Gum, fried shrimp, pizza and taco salad with lots of cheese
Wants to be: Actor in scary movie or musician
School: Kindergarten at Kersey Creek Elementary