Bladder exstrophy is a rare, but treatable, condition that occurs during pregnancy.
Bladder exstrophy is a rare condition that happens when a baby's bladder sticks out through the wall of the stomach (abdomen). The bladder is flat and can be seen on the outside of the body. A typical bladder is round and located inside the lower part of the abdomen. In bladder exstrophy, the skin, muscles and hip (pelvic) bones don't join properly. The bladder can't hold urine.
Bladder exstrophy affects the organs in the urinary and reproductive systems. It can cause problems with the abdominal wall, bladder, genitals, pelvic bones, rectum and anus.
Bladder exstrophy care begins at diagnosis – even if that’s before birth.
About half of children with bladder exstrophy are diagnosed before birth during a routine ultrasound or MRI. When diagnosed before birth, speaking with parents can teach them about the condition and what to expect.
Even if bladder exstrophy isn’t diagnosed until after birth, it’s important for families and providers to know they don’t need to travel to a special hospital to deliver their baby. They can give birth in their community hospital and take the baby home. That newborn period of bonding is important for parents and baby, and it’s not necessary to disrupt it.
Bladder exstrophy treatment includes surgery to put the bladder back inside the abdomen. This is followed by another procedure when the baby is about one year old.
Children with bladder exstrophy are totally incontinent, meaning they are unable to control the flow of urine. That’s why surgery is needed. The first step is to close the bladder. It is done once the baby sets a feeding schedule and starts to gain weight. This is usually between 2 weeks and 3 months of age. It gives the family time to bond and get used to the reality of bladder exstrophy.
After the closure and a brief hospital stay, the child will go home with the family until it is time for a second surgery, known as the Kelly procedure. The Kelly operation is more extensive. It reconstructs the affected body parts and addresses bladder control. This surgery usually occurs around age 1.
The new Bladder Exstrophy Program at Nationwide Children’s Hospital is built around the Kelly procedure, which uses existing tissue and muscle to create a ring of muscle that acts as a sphincter. Until now, this surgery has not been widely available in the United States.
Hospitalization with this approach is dramatically reduced – requiring a week to 10 days inpatient – compared to traditional approaches to bladder exstrophy repair. Notably, osteotomy is rarely needed for primary cases. Led by V. Rama Jayanthi, MD, and Peter Cuckow, MB, BS, FRCS, the Bladder Exstrophy Program at Nationwide Children’s is poised to launch a new era of care for children in the United States.
Dr. Cuckow recently joined the pediatric urology team. Internationally recognized for his surgical capabilities, he is particularly known for his mastery of the Kelly procedure for bladder exstrophy. Dr. Cuckow is one of the few physicians in the world with expertise in this specialized technique, and he is the sole practitioner on faculty in the United States offering this option.
“Dry by elementary school” isn’t just a goal. It’s the reality for the majority of patients treated with this approach.
Some boys may need additional surgery to bring the urethra to the tip of the penis, and in teenage years, some girls may need surgery to their vaginal openings. Patients who don’t become continent will be offered conventional surgery to make them dry.
Ongoing care will help to make sure your child's bladder, kidneys and genitals develop and remain functioning in a healthy way.
Rama Jayanthi, MD, is Chief of the Department of Pediatric Urology at Nationwide Children's Hospital and a Clinical Professor of Urology in the Department of Urology at The Ohio State University College of Medicine. He is also Chief of Pediatric Urology at Dayton Children’s Hospital.
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