What is the treatment for exstrophy of the bladder?
Specific treatment for exstrophy of the bladder and epispadias will be determined by your child's doctor based on:
- Your child's age, overall health, and medical history
- The extent of the disorder
- Your child's tolerance for specific medications, procedures, or therapies
- Expectations for the course of the disorder
- Your opinion or preference
Traditionally, children born with bladder exstrophy in the greater Washington, DC, metropolitan area were transported to Children’s National immediately after birth, and surgery was performed within 36 hours.
“Infants’ bones are most malleable during this timeframe, and we saw good physical results using this approach,” Dr. Pohl said. “However, it left something to be desired, especially for the family. The baby was transferred away from the mother, so there was little time to develop an early bond, something we know is extremely important. After surgery, the infant was placed in traction for weeks, making it difficult for mothers to breast-feed or hold the baby.”
With this in mind, Children’s National began offering a new option for children born with bladder exstrophy. Instead of performing surgery immediately after birth, Dr. Pohl now sends families home with explicit instructions on caring for their infants’ special needs and performs surgery at a later date before the infants are 6 months old.
This delayed surgical process also allows more time to arrange the surgery. To correct bladder exstrophy, Dr. Pohl works in tandem with orthopaedic surgeon Shannon Kelly, MD, a hip reconstruction specialist.
Dr. Kelly focuses on correcting pelvic bone placement to support the organs, and Dr. Pohl reconstructs the patients’ bladder and genital anatomy—a process that can take up to six hours.
“I perform a procedure called innominate osteotomy, cutting the pelvis and then hinging it closed so that it can give bony coverage to Dr. Pohl’s soft tissue repair,” Dr. Kelly said. “My job is to create a structure that properly supports the reconstruction. After surgery, I help him close and put the children in casts that they’ll wear for six weeks. It’s amazing to see these children, who in some cases were extremely impaired with no recognizable genitalia, running around a year or so later like normal children.”