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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:

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.
Yoni, Sacramento
patient and physician reviewing information on tablet

Pediatric Surgeons that Specialize in Colorectal Care

Our pediatric surgeons are recognized worldwide and specialize in care for children experiencing issues with their bowels and digestive system, among other conditions. They work to give children improved health, better function and less pain, while also giving children greater independence, ability and confidence.

Innovative Treatments

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Alternatives to Rectal Enemas

Our team provides individualized diets, laxatives and psychosocial therapy to provide relief for children with constipation.

Anoplasty

Shriners Children's pediatric surgeons perform this surgery to correct anorectal malformations that cause painful bowel movements. It involves the reconstruction of the anus to stretch or enlarge the opening where stool drains.

Colonic Irrigation

This alleviates immobile stool in the colon, preventing bacterial overgrowth and colitis. Our team teaches parents to perform colonic irrigation effectively at home.

Colon Resection

Colon resections, also referred to as sigmoid resections or bowel resections, are performed by our pediatric surgeons. The procedure involves removing part of the bowel to treat and prevent diseases and conditions that affect the colon.

Gastrostomy Tube Placement

A gastrostomy tube (G-tube) is placed in the stomach as a feeding tube for children who cannot get enough nutrition by mouth. Shriners Children’s uses G-tubes for children with esophageal, stomach or intestinal problems.

Ileostomy

An ileostomy helps waste and gas exit the body without passing through the colon or rectum. An Ileostomy is typically used when a disease is preventing the colon from working properly or the colon has to be removed.

Ostomy Creation and Closure

Ostomy procedures change the way a child's urine or stool exits their body because of problems with their digestive or urinary system. Ostomies can be temporary or permanent.

Revision Surgeries

Severe burns may require surgeries to improve mobility, functionality and reduce the appearance of scars. At Shriners Children’s this is part of a comprehensive care plan developed for your child.

Next Steps

Request an Appointment

Families and caregivers seeking treatment should start by contacting us for an appointment.

Log in to the Patient Portal

Parents and guardians of existing patients can email, request records, schedule appointments and more.

Refer a Patient

Physicians and healthcare providers can request appointments, start transfers or contact us with questions.