One of the best possible outcomes for children born with classic bladder exstrophy would be the ability to urinate normally. But two large studies in recent years, including one from Nationwide Children’s and its peers in the Pediatric Urology Midwest Alliance brought bad but not necessarily unexpected news: true continence with normal urination is unusual, and only then with many major surgeries.
The outcome that most patients can expect is “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, but it negatively impacts quality of life, says Rama Jayanthi, MD, chief of Urology at Nationwide Children’s.
So Dr. Jayanthi has developed a new rectal diversion approach. He closes the bladder neck, augments the bladder so it becomes a low-pressure reservoir and connects it to the rectum via a new channel. Urine leaves the body through the rectum, and no catheterization is needed. The rectal sphincter maintains continence.
The approach is a reimagining of uterosigmoidostomy, a largely abandoned procedure involving connecting ureters to the sigmoid colon.
Uterosigmoidostomy carries significant infection and cancer risks. Dr. Jayanthi says that conceptually, his approach reduces the risks by eliminating feces reflux into the ureters (because the ureters remain connected to the bladder) and limiting the mixing of feces and urine.
The patients who have had this procedure at Nationwide Children’s have had very few infections. Dr. Jayanthi and other experts still advise caution, however, because there is little long-term data on safety. Most families may be best served by the procedures that result in regular catheterization.
But for families who are fully aware of the risks and benefits, Dr. Jayanthi’s approach can make for a better quality of life.
“You have to absolutely lay it on the line with the families, tell them all the information you know, and then it has to be their choice,” he says. “But that’s the point. Now there is a choice that they didn’t have before.”