Shriners Children's provides care expertise for children with bladder exstrophy.
The goal of our colorectal and gastrointestinal specialty care is to provide children with anal-rectal disorders advanced care and rehabilitation that frees them from social stigma and allows them to live and play like other children.
What is Bladder Exstrophy?
Bladder exstrophy is a rare birth defect in which the bladder develops outside the fetus. It causes an infant to be born with the bladder inside out and exposed on the outside of the body. The exposed bladder can't store urine or function normally, resulting in urine leakage (incontinence).
Problems caused by bladder exstrophy vary in complexity. They can include problems in the bladder, genitals and pelvic bones, as well as in the intestines and reproductive organs.
Bladder exstrophy can result in weakened abdominal muscles and a shorter than average urethra and vagina or penis. It can present several associated challenges during care, including:
- Bladder growth
- Urinary incontinence (enuresis)
- Urinary tract infection
What Are the Symptoms of Bladder Exstrophy?
It may be spotted on a routine ultrasound during pregnancy. Sometimes the defect isn't visible until the baby is born. Babies born with bladder exstrophy will need surgery to correct the defects.
How Do We Care for Children with Bladder Exstrophy?
The team of pediatric surgeons at Shriners Children's understands the physical and emotional impacts of bladder exstrophy for both an expectant mother and the child. Children born with bladder exstrophy are treated with reconstructive surgery after birth and then are provided long-term follow up care including medical management, bowel management, psychosocial support and other support services. Additional surgeries are sometimes needed as the child grows.
Children with bladder exstrophy have normal life expectancies and the ability to live full and productive lives with working relationships and children of their own. Shriners Children's offers a wide variety of services to put children on the path to independence and freedom.
Specific treatments and services may vary by location. Please contact a specific location for more information.
Understanding Your Child's Colorectal and Gastrointestinal (GI) Appointment(s)
On the first visit, parents and children typically come for a group overview and educational presentation about bowel management. Our doctors and nurses explain the medicines, enemas and diets we use as treatment options. Each family has a one-on-one clinic visit with a provider from the program to make a plan for their child.
If referred to one of our locations for a more complex condition or surgery, you and your child go directly to the one-on-one visit with one of our providers to build an individualized plan of care.
Sometimes, when deemed appropriate, your child may have a bowel X-ray. This helps us with diagnoses and check whether your child’s plan is working. A nurse will talk with you to discuss your child’s results.
Our goal is for your child to empty their bowel daily with no accidents and to live with as few limitations as possible. Success depends on your child’s condition and following your plan closely.
How We Support Your Child’s Total Health and Well-Being
Families and patients say that Shriners Children’s feels like home to them, and it's no wonder to us. We know that a child's needs go beyond the physical. Our care teams support their social, emotional and developmental health with patient programs and activities.
A few examples include:
- Child life enrichment
- Creative arts
- Live entertainment
- Music therapy
- On-site public schooling
- Pet therapy
- School and community re-entry program
- Specialty camps
- Therapeutic recreation
Jordyn’s care was truly a team effort. Her medical team discussed her case and decided what would be best. They took the time to include us in the decision-making process. It was truly a collaboration.