About the Bladder Exstrophy Program
The Bladder Exstrophy Program at Children’s Hospital of Philadelphia specializes in the treatment of infants and children with bladder exstrophy, cloacal exstrophy, epispadias, and any variations of the bladder exstrophy-epispadias complex (BEEC). These rare disorders occur early on while the fetus is developing in the womb and are often diagnosed prenatally. Our goal is to provide each child expert surgical care and improve their quality of life, continence and body image.
Children in our program have access to a multidisciplinary, coordinated team that includes experts in urology, general pediatric surgery, orthopaedics, maternal-fetal medicine, neonatology, anesthesia, radiology, gastroenterology, nephrology, pelvic floor physical therapy, biofeedback, clinical psychology and child life.
Providing early diagnosis, prenatal care and delivery planning
Most children seen through our Bladder Exstrophy Program are diagnosed before birth via ultrasound imaging and magnetic resonance imaging (MRI). Our team collaborates closely with CHOP’s Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment to provide an accurate, detailed diagnosis and comprehensive surgical planning, before your child is even born.
Children diagnosed before birth with these rare, complex conditions who may require specialized care immediately upon delivery have the option of delivering in CHOP’s Garbose Family Special Delivery Unit (SDU). The SDU is the world’s first birthing unit located within a freestanding children’s hospital designed just for pregnant women carrying babies with known birth defects. Delivering at CHOP provides immediate access to the team that will care for the child after birth.
No matter where you are in your journey, we partner with each family to educate them about their child’s condition and lifelong expectations. Through a series of visits, we’ll work with you to create a plan for delivery, NICU stay, surgical repair and postoperative care.
Treatment planning: Exstrophy repair and long-term care
Surgical repair of exstrophy typically occurs when a child is anywhere from 4 to 16 weeks old. At CHOP, we use a reconstructive treatment approach called the complete primary repair of exstrophy (CPRE), which achieves all the goals of surgical correction in one operation. The CPRE allows for more normal bladder function to begin earlier and optimizes chances for long-term continence.
Beyond surgery, our program offers long-term disease management focused on optimizing urinary control, appearance and function of the genitalia, and preservation of kidney function, with regularly scheduled follow-up clinic visits and ultrasounds to monitor the bladder and kidneys as they grow.
We have developed an extensive physical therapy program that focuses on the development of core strength and pubic muscle coordination to help these children develop continence earlier without a secondary bladder neck reconstruction.