Children's Wisconsin is a Center of Excellence and member of MIBEC (Multi Institutional Bladder Exstrophy Consortium) for bladder Exstrophy and Epispadias. Our goal is to help your child have good bladder health, bladder control, and lead a normal active life.
Children's has been designated a "Center of Excellence" in the treatment of bladder and cloacal exstrophy by the Association for the Bladder Exstrophy Community (A-BE-C). A-BE-C's Centers of Excellence program is the first to recognize health systems that are meeting the highest standards of treatment for the rare conditions of bladder and cloacal exstrophy, including post-operative and long-term care.
What is bladder exstrophy?
Bladder exstrophy (pronounced Xs-tro-fee) is a rare complex disorder of the bladder which has not formed correctly during fetal development in the womb.
In most cases, the bladder is turned inside out and is herniated outside the body through an opening in the lower belly (abdominal wall). The skin and muscles of the lower belly (abdominal wall) do not cover the bladder or hold it inside. The front parts of the pubic bone (pelvic pubic bone) typically are separated (diastasis).
Video: Learn about our Bladder Exstrophy Program through Cassie's story
Learn more about growing up after bladder exstrophy surgery with an update from Cassie and Kyleigh
Contact the Association for the Bladder Exstrophy Community (A-BE-C) to learn about an international support network for patients and families living with bladder exstrophy.
There are 3 types of exstrophy:
- Epispadias affects the tube that carries urine from the bladder to the outside of the body (urethra). This is a less severe form. Male epispadias happens about one in 117,000 births. Female epispadias happens about one in 484,000 births.
- Classic bladder exstrophy affects the bladder, urethra, and genitals. Bladder exstrophy is rare. It happens in about one in 40,000-50,000 babies. It is more likely in boys than girls.
- Cloacal exstrophy affects the bladder, urethra, genitals, and bowel. This is a more severe form. And happens in about one in 100,000 babies. It is more likely in girls.
Symptoms and causes
There is no known cause for exstrophy. The problem occurs four to eight weeks after a woman becomes pregnant. This is when organs and tissues begin to form and specifically develop. Exstrophy is not caused by something the mother did or did not do while she was pregnant. It does not run in families (it is not hereditary).
Since the bladder is inside out and open, it does not hold or store urine. The exstrophy baby will constantly leak urine from the open bladder.
- Your child will be treated by our specialty team consisting of urologists, orthopedic surgeons, anesthesiologists, nurse practitioners, and nurses who have experience with all areas of bladder exstrophy. Typical care begins with a visit to our Urology Program.
- The majority of our patients come to us as newborns for exstrophy repair; however we also treat older children and welcome those who have had surgery elsewhere. We encourage second opinions.
- If you are pregnant and have an ultrasound showing your baby may have exstrophy, our team encourages an appointment with our Fetal Concerns Center to learn more and what to expect.
- The method to repair bladder exstrophy is with a single surgery: Complete Primary Repair. This was developed by Michael Mitchell, MD, who is professor emeritus here at Children's and a member of MIBEC. With this method (complete primary repair), urologists correct the condition in one stage. This occurs weeks after birth, instead of in multiple surgeries over many years. This permits immediate ongoing parental/ child bonding with minimal inpatient hospitalization.