May 7, 2018
While at a routine ultrasound, Lauren’s excitement of having a second child quickly gave way to worry when the doctors saw something unusual with her son’s kidneys. “Since he was still in utero, they weren’t sure what it was,” Lauren said. “I was completely shocked at first, but eventually, I accepted it and took everything day by day.”
When another ultrasound at eight months showed that she was losing amniotic fluid and urine was trapped in her son’s bladder, Lauren was brought from Quesnel to BC Women’s Hospital in Vancouver. There, the doctors decided it was time to induce labor.
Shortly after birth, Nathan was diagnosed with an illness so rare that Lauren had never heard of it and the doctors hadn’t seen it before. Known as Prune Belly Syndrome, it’s a disorder characterized by narrowing or blockages of the urinary tract and an absence of abdominal muscles. The condition — which occurs in around one in every 40,000 kids, usually boys — causes the skin around the stomach to wrinkle like a prune. Without proper treatment, it can be life-threatening.
Although the doctors at BC Children’s Hospital had never treated a child with Prune Belly Syndrome before, Lauren said the team explained everything in terms she could understand and helped her understand how they would move forward.
Nathan first needed a vesicostomy, a procedure that created an opening below his belly button to allow his bladder to drain directly into a diaper. After several weeks in recovery, Nathan and his mom were able to go home for the first time.
“I was so relieved,” Lauren said. “But in the back of my mind, I wondered how long his kidneys would last and when he would have to start dialysis.”
That occurred sooner than expected. At his first checkup, the doctors found that Nathan was experiencing kidney disease and failure from the fluid retention in utero, which were causing toxins to build up in his body. To keep him healthy while waiting for a new kidney, Lauren learned how to do dialysis and Nathan was on it at home for ten hours every night.
When Nathan was two, the family got surprise news during a checkup at BC Children’s that they had a kidney for him. While technically too young for the surgery, his stomach had extra room for an adult kidney to go in because of the syndrome. The operation was successful and Nathan hasn’t experienced any problem with rejection.
At six years old, Nathan continues to face challenges with skills that involve his stomach muscles. Even simple, everyday activities, such as sitting up, can require a lot of effort. As Nathan gets older, he won’t be allowed to play contact sports like football or hockey. However, even with a rare disease, he will be able to live a full life, which his family is incredibly grateful for. “Apart from the sports, he’s just like any other kid,” Lauren proudly states.