At 11 p.m. on Thanksgiving Day weekend of 2008, the phone rang at the Wren household. Sherie recognized the incoming number. Butterflies churned in the pit of her stomach. She took a breath and answered. Unlike every call before this, this one brought news she and her husband, Brian, had been waiting months for: Their son, Joseph, had been matched with a kidney donor.
Joseph was only 3 at the time, but in those three short years he had already faced overwhelming medical challenges. He was born with Eagle-Barrett Syndrome, a rare condition that affects the urinary system. One in 40,000 U.S. babies are born with the disease each year. Even before Joseph was born, fluid started building up within his bladder, causing damage and preventing his abdominal muscles from forming properly. In severe cases like Joseph’s, children with the condition lack any abdominal muscles, giving the belly a wrinkled appearance.
Moments after Joseph was born at 4 pounds, 14 ounces, he was transferred directly to Children’s Hospital Colorado to get the specialty care he needed.
“He was such a fragile little baby,” Sherie said.
Joseph then spent his first few months of life in the Neonatal Intensive Care Unit (NICU) at Children’s Colorado so doctors could closely monitor his kidney function.
The Kidney Center at Children’s Colorado sees thousands of patients every year and is the only dialysis center dedicated exclusively to kids in Colorado.
While their son received the best clinical care available, Sherie, Brian and their older son, Roy, received compassion and support from other caregivers at Children’s Colorado who help families cope with a devastating diagnosis. The family learned there is no cure for Eagle-Barrett Syndrome. It requires a lifelong commitment to taking medication and receiving consistent medical treatment. In order for Joseph to survive, he would eventually require a kidney transplant. The staff at Children’s Colorado prepared the family for what to expect and how to successfully continue Joseph’s care at home.
“They made a very complex situation feel a little simpler,” Sherie said.
Between constant checkups and multiple surgeries to improve Joseph’s abdominal and urinary function, the family spent more time at Children’s Colorado than at home those first few years. In January 2008, Joseph finally weighed over 25 pounds – the weight limit required to get on the kidney transplant list.
Every time the phone rang, they wondered if it was “the call.” But time and time again, it was just confirmation of an upcoming appointment. When they finally received the news, it brought a mix of emotions.
“I grieved for the organ donor’s family while simultaneously rejoiced in the gift of life for Joseph,” Sherie said.
Kidney transplantation is not a cure for Eagle-Barrett Syndrome - it is a treatment option for kidney failure. Children’s Colorado has performed more than 250 kidney transplants since 1988 with some of the best outcomes in the nation. Thankfully, Joseph was one of those success stories.
To prevent organ rejection post-surgery, Joseph underwent six-hour infusions once per week at Children’s Colorado where he spent long days playing Legos® and doing puzzles to pass the time. He couldn’t play his favorite sport of tackle football during his recovery, but he was known for organizing unparalleled games of touch football in the lobby of the hospital. Even his doctors would join in the fun.
Besides one rejection scare, the transplant restored normal kidney function and has improved their lives for the last eight years. They recently celebrated a two-year stretch without any hospitalizations.
Now 12, Joseph’s kidney is functioning at about 50 percent. He continues to visit Children’s Colorado to monitor risk of infection and kidney function. Transplanted kidneys typically last 8 to 12 years, so he will likely need another kidney soon.
Children’s Colorado is committed to providing the very best care today, but also innovating care for the future, so kids with kidney diseases will not have to face as many invasive surgeries and time-consuming dialysis treatments.
With one of the top-ranked pediatric kidney centers in the country, the world-class team of experts are thinking differently about kidney diseases to come up with new therapies and treatments for children facing debilitating kidney conditions. Philanthropy provides critical funds to fuel research, innovation and expert care to give children like Joseph hope for brighter future.
Until then, the family continues to enjoy life and take challenges in stride. Joseph loves football, but will not be able to play contact sports so he plays touch and flag football with his friends. He is interested in learning golf and playing baseball. He expresses his creativity through music, including the guitar, drums, and singing – he has even written a few songs. His brother, Roy, 16, fiercely looks out for Joseph in every social situation where other kids might not understand his disease.
”It’s a team effort to navigate life with a disease like this. We are lucky to have a great family and to have Children’s Colorado,” Sherie said.