Bladder Exstrophy Care & Support Group

Two smiling children.

Who we are

The Center for Bladder Exstrophy Care and Support Group at Children’s Hospital Boston cares for children with bladder exstrophy and supports their families.

Bladder exstrophy is a rare, complex birth defect involving the urinary, reproductive and intestinal tracts, as well as the musculoskeletal system. During a baby’s development in the womb, the abdominal wall and underlying organs sometimes do not fuse properly, and the infant is born with the bladder inside-out and exposed on the outside of the body.

There are approximately 400 new cases of bladder exstrophy each year in the United States, and boys are affected approximately twice as often as girls. Bladder exstrophy can sometimes also result in weakened abdominal muscles and a shorter than average urethra and vagina or penis. It can cause a variety of complications and problems, including incontinence, catheterization, reflux, infertility and the need for repeated reconstructive surgery.

If your child has bladder exstrophy, Children’s can provide the latest innovations in treatment – our surgeons and clinical staff are some of the most experienced in the world with this condition -- as well as emotional support for you and your child as you cope with the challenges of this condition. After surgical repair, we closely monitor your child's development, growth, and overall health, particularly bladder and kidney function.

Conditions & Treatments

Our expertise

We can fully repair your child’s exstrophy in a single operation, closing the bladder and urethra) and reconstructing the bladder neck and genitalia. A complete repair allows for earlier normal bladder function, which leads to optimal bladder growth and development. Through a Webcast, we have shared our techniques with specialists and referring physicians around the world.

Children’s has pioneered efforts to provide strong psychosocial support for children with bladder exstrophy. Our bladder exstrophy support group, founded in 1992, includes nurses and child life specialists experienced in caring for caring for children with this condition. The group gives you and your child a place to learn about the condition and its management and share your concerns. In addition, our family-to-family program can connect you with other families who have been through the same experience.

Growing organs in the lab

Bladder grown in lab by researcher at Children's Hospital Boston. Researchers at Children’s participated in the successful rebuilding of the first complex organ, the bladder, from living tissue cultivated in the lab. They first took a few healthy cells from the patient’s bladder, then grew new bladders to transplant into their young patients. And because the bladders were built from the patients’ own cells, there was no danger of an immune-system reaction.

Repairing exstrophy in utero

Since bladder exstrophy can be diagnosed prenatally, Children’s researchers are considering fetal intervention, such as covering the exstrophy tissue or repairing the exstrophy itself in utero. Studies in animals suggest it may be possible to take a biopsy of the fetal bladder tissue, expand this tissue in the laboratory and have it available to perform repairs once the baby is born.