A SURPRISING APPROACH TO CLASSIC BLADDER EXSTROPHY A procedure developed at Nationwide Children’s Hospital comes with possible risks but can have a huge impact on quality of life. written by Jeb Phillips
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t’s become clearer over the last two years that a “good outcome” for children born with classic bladder exstrophy is in the eye of the beholder.
One of the best outcomes, nearly everyone would agree, is that a child with this complex congenital defect — often requiring multiple procedures over the course of years — would ultimately be able to urinate like a “normal” child. In fact, that is the question parents most often ask after a diagnosis, says V. Rama Jayanthi, MD, chief of Urology at Nationwide Children’s Hospital: “Will my child be normal?” For decades, surgeons believed that many children could have that outcome. There were certainly individual examples of it. But the condition is relatively rare, and a patient’s potential procedures so spread out over time, so it was tough to track long-term outcomes. Then, in late 2019 and early 2020, came the two largest studies ever published on bladder exstrophy outcomes
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PediatricsNationwide.org | Spring/Summer 2021
— one from Nationwide Children’s and its peers in the Pediatric Urology Midwest Alliance, and another from Johns Hopkins Medical Institutions. They brought the bad news that experienced pediatric urologists had begun to suspect: true continence with normal urination was unusual, and only then with many major surgeries. The outcome that most patients could expect was “staying dry” through clean intermittent catheterization every few hours for the rest of their lives, the studies found. From a medical perspective, that may well be considered a success, says Dr. Jayanthi. “You have to consider quality of life as an outcome too,” he says. “The quality of life for a child who must catheterize every three hours, the quality of life for that child’s family, can be difficult. Many children are unhappy needing to catheterize. Is there a way we can address that?” Dr. Jayanthi at Nationwide Children’s, and perhaps a handful of other pediatric urologists in the United States, believe there is one. The procedure is unusual
