On February 25, 2020, Brandy Westbrook stood by as her four-year-old son, Zane, awaited a kidney at Arkansas Children’s Hospital (ACH). Across town, at the University of Arkansas for Medical Sciences (UAMS) Health Center, Brandy’s husband Kirk was having one of his kidneys removed and prepared for rapid transport to ACH. Brandy wished she could be in two places at once. Split between two hospitals was not where they expected to be when Zane was born on Easter weekend nearly four years prior.
“He was a healthy baby,” Brandy said.
A rare genetic mutation had triggered Zane’s kidney failure, but if all went well, Kirk’s donated kidney would give Zane the best chance at a childhood doing the things he loved.
When he was nearly a year and a half old, the first signs of Zane’s kidney condition appeared. Most toddlers have chubby cheeks and carry some baby fat, but Zane’s parents noticed unusual swelling.
“Imagine a 17-month-old having an extra 5 pounds of fluid on him,” Brandy said.
Specialists at ACH diagnosed the cause of the swelling as Nephrotic Syndrome. Saritha Ranabothu, M.D., pediatric nephrologist, medical director of the kidney transplant program at Arkansas Children’s and associate professor of pediatrics at UAMS, explained that nephrotic syndrome is a kidney problem where the body leaks too much protein into the urine.
“When you have low levels of protein in the blood, you will leak all the fluid into your tissues, and that causes swelling,” Ranabothu explained. “You’re also losing protein that helps fight infections.”
According to the National Institutes of Health, “fewer than 5 in 100,000 children worldwide develop nephrotic syndrome each year.” Several different conditions can damage the kidneys and cause nephrotic syndrome. The most common source is minimal change disease. Nephrotic syndrome can sometimes occur as a result of other conditions like focal segmental glomerulosclerosis (scarred kidney), infections, medications, autoimmune diseases like lupus, genetic mutations and, in rare cases, cancer.
Mohammad Ilyas, M.D., an Arkansas Children’s pediatric nephrologist and associate professor of pediatrics at UAMS, was part of Zane’s care team and explained the diagnosis to Brandy and Kirk.
“It was scary. Dr. Ilyas told us to stay off the internet, obviously, because there are a lot of scary things out there. I tried,” Brandy said. “But I’ll be honest, I’m a parent, and I still wanted to do the research. I started researching all this stuff that can end up happening. I’m thinking my kid might have to have a kidney transplant when he was so little. It was a scary time because we didn’t know his future. We didn’t know what was going to happen.”
The main treatment for nephrotic syndrome is steroids. Steroids is effective for 80-90% of patients with nephrotic syndrome if the underlying cause is minimal change disease. Therefore, Zane’s first treatment option was steroids. When his condition didn’t improve, Zane’s care team used genetic testing to discover the cause.
There is no known family history of kidney disease in the Westbrook family. Brandy had a standard genetic screening when she was pregnant. Standard screenings can identify many common disorders, like cystic fibrosis, sickle cell disease or spina bifida. However, those genetic tests don’t look for rare conditions unless there is a family history.
A second round of genetic testing was ordered because Zane’s condition was resistant to steroids. The follow-up testing revealed an NPHS2 gene mutation. Zane’s NPHS2 gene mutation triggered focal segmental glomerulosclerosis (FSGS), a rare kidney disease that causes nephrotic syndrome. The FSGS diagnosis meant Zane’s condition would be less likely to respond to any medications, his kidneys would eventually fail and he would need a kidney transplant.
For more than a year, Zane’s kidneys remained stable. Throughout 2017, his care team at ACH kept a close watch while preparing the Westbrook family for everything involved with a transplant.
On March 8, 2018, the Westbrooks got the news they’d been preparing for – Zane’s kidneys were failing. Brandy said she’ll never forget that day because it happened to be World Kidney Day. Since 2006, the International Society of Nephrology and the International Federation of Kidney Foundations have raised awareness of kidney disease and related conditions on the second Thursday in March.
Once transplant became inevitable, Zane’s father Kirk said he had no doubt about donating one of his kidneys to his son. “If I can do this, I want to be the one to do it,” he said. “We had a tremendous support system and family and friends were willing to get tested. I love them all, and I appreciate them all, but I wasn’t going to let anybody do it if I could do it.”
Kirk underwent many tests to see if he would be a compatible donor. A list of criteria on the National Kidney Foundation website describes the blood and tissue screening that would help Zane’s care team find the best match. Living donors, like Kirk wanted to be, also get tests that show how well they can handle the physical and emotional stress of donating.
By mid-2019, the care team knew Kirk was a compatible match, but there was one problem: his weight. “[Brandy and I] put ourselves and our personal health on the back burner for a long time because we put so much focus on Zane and the endless stays in the hospital and trying to keep life normal for our daughter,” he said.
Excess weight, especially around the abdomen, makes the surgery to remove the kidney more challenging and increases the risk of bleeding, infection, and other complications in donors. Kirk had been an athlete in his younger days, so he believed he could get back in shape. “I had to kick it into high gear and start working out every day, eating right and taking care of myself.”
Zane’s name was added to the United Network for Organ Sharing, the national registry of deceased donors in case Kirk couldn’t lose enough weight and to increase the chances of finding the best match.
While Kirk was working out, Brandy learned about peritoneal dialysis (PD), a process that uses the lining of the belly (peritoneum) to filter the blood inside the body. She learned how to operate the PD machine and make Zane’s bedroom as safe and sterile as a hospital room. Every night for almost a year, she connected her son to the PD machine that would clean his blood while he slept.
Zane had both kidneys removed in October 2019 in preparation for his transplant in early 2020. By January 2020, Kirk had lost 60 pounds and was approved as a donor.
Just a few weeks before the country shut down in response to the COVID-19 pandemic, Brandy and Zane waited at Arkansas Children’s Hospital while Kirk had his kidney removed across town at UAMS. “It was nerve-racking because I couldn’t be in two places at once,” Brandy said.
On February 25, 2020, Zane received his father’s kidney. Every year since, the Westbrooks have celebrated their “kidneyversary” by donating toys to ACH. Zane requested the toy drive and donation because the toys given to him during his many hospital visits helped keep his spirits up.
Nowadays, he loves playing baseball and chess and is allowed to eat chocolate again. Monthly visits to ACH are part of his routine follow-up care.
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