Next Steps
If you or your child has been diagnosed with bladder exstrophy, learning about the condition and available treatment options is an important first step.
Bladder exstrophy is identified by physical findings present at birth. These findings occur because the bladder, abdominal wall, and surrounding structures do not form properly during early fetal development.
The most visible finding is an open and exposed bladder on the lower abdominal wall. The condition also involves differences in the urinary tract, pelvic bones, and reproductive anatomy.
Bladder exstrophy is part of the exstrophy–epispadias complex (EEC). Because it develops before birth, it is visible immediately after delivery and in some cases on prenatal ultrasound.
Recognizing these findings early helps families better understand the condition and connect with specialists experienced in bladder exstrophy care.
Bladder exstrophy affects several parts of the body because the urinary system, pelvic bones, and surrounding structures develop differently during early pregnancy. These findings help explain how the condition presents at birth and how care is guided over time.
The bladder is open and exposed on the lower abdomen at birth. Instead of forming inside the body, the bladder develops outside the abdominal wall and appears as a reddish tissue surface.
Because the bladder is open, urine cannot be stored and flows continuously from the bladder surface. This allows families to begin understanding the condition and move forward with care alongside an experienced medical team.
Children born with bladder exstrophy have separation of the pelvic bones because the pelvis does not form properly during development.
Pelvic bone separation is an important factor in surgical planning. Care teams use this information to support safe and effective reconstruction options.
Bladder exstrophy affects how the genital structures develop.
In boys, the condition is associated with epispadias, where the urethra opens on the upper surface of the penis rather than at the tip.
In girls, the genital anatomy develops differently, including the urethra and surrounding structures.
These differences are part of the exstrophy–epispadias complex, which affects the urinary and reproductive systems together.
Because the bladder is not enclosed at birth, urine flows continuously from the bladder surface.
After reconstructive surgery, urinary continence is a goal of treatment and care is tailored to support each child’s progress over time.
Bladder exstrophy is visible at birth based on the appearance of the bladder and lower abdominal wall. The bladder is open and exposed on the lower abdomen and appears as a reddish tissue surface. Urine may flow continuously from this area because the bladder is not enclosed within the body.
The lower abdominal wall does not close fully, and the pelvic bones are separated more widely than normal. The genital structures develop differently. In boys, the penis is shorter and broader, and the urethra opens on the upper surface. In girls, the genital anatomy also develops differently, including the urethra and surrounding structures.
These findings are present at birth and are immediately apparent. Families are supported as care teams explain what they are seeing, guide them through treatment options, and provide ongoing support as care begins.
Bladder exstrophy is identified at birth based on visible findings involving the bladder and lower abdominal wall.
Common findings in newborns include:
Because these findings are present at birth, evaluation begins immediately. Newborns are referred for prompt evaluation, and it is important that care is guided by pediatric urology teams experienced in bladder exstrophy. Families may need to advocate for access to this level of expertise, and organizations like A-BE-C can help support connections and navigation when access is limited.
Families are supported as care teams explain the condition, guide next steps, and begin planning appropriate treatment.
The Association for the Bladder Exstrophy Community (A-BE-C) maintains a list of Centers of Excellence [add link] and international resources [add link] to help guide care decisions and connections. A-BE-C connects families with experienced medical teams and a global support network, ensuring they are supported throughout their care journey.
In some cases, bladder exstrophy is identified before birth through prenatal ultrasound, allowing families and care teams to prepare for care at delivery.
Bladder exstrophy can sometimes be diagnosed during pregnancy through prenatal ultrasound. Doctors may notice that the bladder is not visible inside the abdomen or that the lower abdominal wall appears differently than expected. In other cases, the diagnosis is made immediately after birth because the exposed bladder is visible on the abdomen.
After diagnosis, babies are usually referred to a pediatric urology team experienced in treating bladder exstrophy. Specialists evaluate the child’s anatomy and help families understand treatment options and surgical planning.
To learn more about how doctors confirm and evaluate the condition, visit our guide on Bladder Exstrophy Diagnosis.
If you or your child has been diagnosed with bladder exstrophy, learning about the condition and available treatment options is an important first step.