Bladder Exstrophy

Specialists in Bladder Exstrophy Surgery

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Duke Children’s is one of a handful of U.S. centers with an expert team specially trained to care for children with bladder exstrophy. We manage care across the lifespan, from prenatal planning to birth and throughout childhood, adolescence, and into young adulthood.

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Complex Treatment Required for Bladder Exstrophy

Bladder exstrophy is a rare birth defect that occurs when the bladder, urethra, and pelvis don’t develop properly. The severity of the condition varies from child to child, but in general, it can affect the anatomy and function of the bladder, kidneys, genitals, pubic bones, and pelvic muscles. Bladder exstrophy may be identified before birth during a routine pregnancy ultrasound, and the diagnosis is confirmed after birth. If it is suspected during your pregnancy, your OB-GYN will refer you to a pediatric urologist who will help to create a delivery plan and to treat your baby after birth.

Treating bladder exstrophy involves a series of surgeries to repair the bladder, reshape the pelvic bones, and ensure affected organs and systems -- such as the kidneys and urinary control -- are functioning correctly. Traditionally, surgery was performed within the first few days after birth, when the pelvic bones are malleable. However, we now understand that for children with smaller bladders, it is better to wait -- usually three to six months, and up to a year -- until the bladder grows large enough to be constructed into a functional bladder. This reduces the likelihood your child will need more complex procedures when they are older. Treatment also includes therapy to help your child learn bladder control.

Our team of pediatric urologists, orthopedists, nephrologists, and physical therapists work together to help your child develop properly. Our goal is to ensure your child achieves adequate urinary continence so they may lead a normal, healthy, and happy life. We also expect that sexual function and fertility will be essentially normal, so future parenthood is possible.

Our Locations

Duke Health offers locations throughout the Triangle. Find one near you.

Family-Friendly Services

Bladder exstrophy treatment is an extended process that is challenging for families. It requires numerous surgeries and weeks of recovery in the hospital, compounded by the worry and stress you might feel caring for a child with complex health needs. Our experts and resources ensure you don’t face these challenges alone. 

Child Life Specialists
After your baby is born, our child life specialists provide support, education, and guidance to help you and your child during treatment and hospitalization. We do everything we can to make your child's health care experience positive -- whether it's explaining a procedure, offering encouragement, or using fun activities to give your child a needed break.

Social Workers
We help you navigate the medical system and coordinate the variety of health services your child needs. Our social workers help you communicate with insurance providers, connect you with resources, and help you manage the details related to your child’s care.

Before Birth

Prenatal Diagnosis and Care

During your first appointment, you will undergo imaging tests such as an ultrasound or MRI to evaluate your baby’s condition. You’ll discuss your results with specialists in maternal-fetal medicine and pediatric urology. Together, we will plan for your delivery and develop a treatment plan for your baby. You’ll learn what to expect for your baby's immediate and long-term treatment.

Newborn Exam and Testing

Once your baby is born, our pediatric urologists examine your newborn and assess your baby’s needs. They use ultrasound to evaluate the kidneys and look for spine problems that can occur with bladder exstrophy. The purpose of the exam is to determine a surgical plan that offers your child the best-possible results.

After Birth

Initial Bladder Exstrophy Repair

The first stage of bladder exstrophy repair is to reform the pelvic bones to the proper position, reconstruct the bladder, and place it into the pelvis. Reconstruction of the urethra and external genitalia may also take place.

Penis and Urethra Repair in Boys

A second surgery may be required in boys around the age of six months to one year. It may be necessary to correct the appearance of genitalia and repair the urethra. This procedure also restores proper filling and emptying of the bladder, which helps it develop properly. 

Bladder Reconstruction Surgery

As your child grows, they will return for regular visits to ensure the bladder is developing properly. Bladder neck reconstruction surgery may be necessary when the bladder reaches a certain size, to allow your child to hold and release urine normally. Children whose bladders do not grow to an adequate size may require additional procedures. These most commonly include bladder augmentation (making the bladder bigger) using a piece of the child’s bowel, or a Mitrofanoff procedure, which involves using the appendix to create a channel between the bladder and skin. Our goal is to prevent a long-term need for diapers.

Pelvic Floor Biofeedback

We offer biofeedback therapy, which takes place before and after bladder reconstruction surgery, to teach your child to use their pelvic floor muscles to hold and release urine. Patches attached to your child’s hip and buttocks allow a therapist to monitor their muscle activity as they play a computer game that encourages them to tighten and release these muscles. 

Follow-Up Care

All children with bladder exstrophy need lifelong follow-up care to prevent bladder-control problems, urinary tract infections (UTIs), or kidney damage that can be caused by the condition. They may need additional surgeries as well as medical care related to sexual or fertility issues. Our experts remain steadfast in their care for your child into adulthood.

Best Children's Hospital in NC

Duke Children's Hospital & Health Center is proud to be nationally ranked in 10 pediatric specialties.

Our Team’s Approach to Bladder Exstrophy Surgery

You are in good hands from the moment bladder exstrophy is suspected and you are referred to one of our specialists. Planning your delivery at Duke University Hospital means you and your baby can both get the care you need from an expert team -- labor and delivery specialists, maternal-fetal medicine doctors, pediatric urologists, pediatric orthopaedic surgeons, and specialized nurses who are experienced in treating this rare condition.

Highly Specialized Team of Surgeons 
Duke Children's is verified as a Level I Verified Children’s Surgery Center by the American College of Surgeons. This designation recognizes our commitment to providing the very best, safest care for kids.

Experienced Nurses
Your newborn will remain in the hospital for up to six weeks after surgery, so it’s important to have experienced nurses who specialize in caring for newborns with bladder exstrophy. Our pediatric urology nurses have advanced training in how to prevent possible complications and keep your baby healthy during recovery. They take excellent care of your child and keep you well-informed every step of the way.

This page was medically reviewed on 04/02/2024 by