Duke Children’s is one of a handful of U.S. centers with an expert team specially trained to care for newborns with bladder exstrophy. Our pediatric urologists and nephrologists work closely with OB-GYNs and maternal-fetal medicine doctors to plan your delivery so your child gets immediate treatment. Our goal is to help your child lead a normal, healthy life.
Complex Treatment Required for Bladder Exstrophy
Bladder exstrophy is a rare birth defect that occurs when the bladder and urinary tract don’t develop properly. The severity of the condition varies from child to child, but in general it can affect the genitals, kidneys, pubic bones, and pelvic muscles. Bladder exstrophy is typically identified with ultrasound during a routine pregnancy check, 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 plan to treat your baby immediately or soon 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. Ideally, surgery is performed within the first three days after birth, when the pelvic bones are malleable. 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.
We work as a team to help your child develop properly. Our goal is to ensure your child achieves adequate urinary continence so they may lead a normal and happy life. We also expect that sexual function and fertility will be essentially normal, so future parenthood is possible.
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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 feel caring for a child with complex health needs. Our experts and resources ensure you don’t face these challenges on your own.
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.
Ronald McDonald House
Enjoy a comfortable place to relax at the hospital in the Ronald McDonald House Family Room. You can grab a light meal, shower, do laundry, or use a computer with internet access. Staffed by volunteers, the family room is here to make your time at the hospital a little more comfortable.
We help you navigate the medical system and coordinate the variety of health services your child needs. Our social workers help you work with insurance providers, connect you with resources, and help you manage the details related to your child’s care.
Behavioral Health Specialists
It’s normal for parents to feel stress, depression, anger, and other emotions when a child is diagnosed with a serious medical condition. You can get compassionate support and guidance from psychiatrists, psychologists, counselors, and other members of our behavioral health team during your child’s treatment. As your child gets older, our behavioral health specialists provide personalized support and encouragement throughout the treatment process.
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
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, he or she 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.
Pelvic Floor Biofeedback
Biofeedback therapy 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 your child’s muscle activity as they play a computer game that encourages them to tighten and release their pelvic floor muscles.
All children need lifelong follow-up care to prevent bladder-control problems or kidney damage that can be caused by bladder exstrophy. 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 through adulthood.
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 one of the few hospitals in the U.S. verified as a Level I children’s surgery center by the American College of Surgeons. This Level I designation recognizes our commitment to providing the very best, safest care for kids.
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.