Bladder Exstrophy Program for Lifelong Comprehensive Care
University Hospitals Rainbow Babies & Children’s provides comprehensive, lifelong care for patients with a rare congenital condition called bladder exstrophy. Our program brings together pediatric and adult specialists to address the complex needs of patients through infancy, childhood, adulthood and beyond.
Our team is committed to the concept of surgery with compassion and raising the standard of care for patients with bladder exstrophy.
Learn More About the UH Rainbow Bladder Exstrophy Program
For more information or to make an appointment call 216-844-8440 and select option 3 (Lifelong Care Program).
Learn More About Bladder Exstrophy
Learn More About the Kelly Procedure
What Is Bladder Exstrophy?
Bladder exstrophy is a rare condition that affects about one in 50,000 children. It can affect both boys and girls but is slightly more common in boys. With this condition, the child is born with their bladder outside of the body, protruding through the abdominal wall below the belly button. It can also cause exposed intestines (cloacal exstrophy), malformed external genitalia, an under-developed urethra (epispadias) and other associated problems.
Surgical treatment is required to repair the bladder and other defects, and to gain bladder control. Patients will also require lifelong access to specialty care for other problems associated with bladder exstrophy, including fertility and pregnancy-related issues, sexual function, and kidney and bladder problems.
Lifelong Comprehensive Care for Bladder Exstrophy and Related Issues
At UH Rainbow, caring for bladder exstrophy patients is not just about surgery to correct the problem. We provide lifelong comprehensive care and support through a family’s entire journey with bladder exstrophy. This starts with the diagnosis, and continues through surgery, recovery and follow-up care throughout a patient’s lifetime.
UH Rainbow is also one of the few centers in the U.S. to offer an advanced single-stage procedure for bladder exstrophy, called the Kelly technique, which has excellent success rates and results. Our team of experts helps ensure families have the support they need and that patients with bladder exstrophy can enjoy improved function, appearance and quality of life.
Key components of the program include:
Innovative Surgical Technique
The Kelly technique is a single-stage procedure for bladder exstrophy repair. UH Rainbow is one of a select few hospitals in the U.S. that offer the Kelly procedure as a treatment for bladder exstrophy.
Comprehensive, Lifelong Care
A multidisciplinary approach to ensure all aspects of patient care are addressed, from surgery to rehabilitation and beyond, from newborn to elderly care.
Patient-centered Approach
We focus on providing personalized care plans tailored to the unique needs of each patient and family.
International Expertise
Our team is collaborating with international experts in bladder exstrophy and the Kelly technique. These world-renowned clinicians bring global expertise and experience to our team.
Follow-Up Care Throughout a Patient’s Lifetime
Children born with bladder exstrophy and cloacal exstrophy require access to specialist care throughout their lives. Though surgery can correct the defects and establish bladder control in childhood, follow-up care is essential to address future issues related to bladder exstrophy. Our program incorporates specialists who can address problems such as:
Bladder and Kidney Stones
Fertility Problems
Gynecologic and Pregnancy Problems
Kidney Infection
Sexual Function
Urinary Incontinence Issues
Urinary Tract Infections
Transition to Adult Care
As children get older and approach adulthood, our team works with patients and families to help ease the transition from pediatric to adult care. Our providers work together to prepare each child and make sure they have access to adult specialists as needed. We aim to make the transition as smooth as possible and our team is always available for any questions or concerns patients may have. The goal is to continuously support the patient and the family, preparing all for an independent life.
Sexual Health and Fertility
Research indicates that bladder exstrophy can impact sexual function and fertility. Our program offers specialized counseling and collaborates with reproductive specialists for fertility treatments for men and women, like intracytoplasmic sperm injection (ICSI). We also provide regular screenings for sexual health issues and address potential complications such as pelvic organ prolapse.
Health Talk: Care for Children With Bladder Exstrophy
Join our experts in this free webinar where they discuss UH Rainbow’s approach to treating bladder exstrophy, combining advanced surgical intervention with holistic, patient-centered care.
Our Experts
Our comprehensive care program includes a team of experts from many pediatric and adult specialties. This multidisciplinary approach ensures all aspects of the condition are managed effectively.
Our team includes:
- Pediatric and Adult Urologists
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Specializing in surgical repair and long-term urologic care.
- Plastic Surgeons
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For reconstructive surgeries to improve genital and abdominal appearance.
- Orthopedic Surgeons
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Managing musculoskeletal issues that may arise due to the condition's impact on pelvic bone structure.
- Psychologists
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Providing emotional and psychological support and addressing body image issues and mental health, especially during transition to adulthood.
- Social Workers
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Assisting with social and financial support, crucial for families dealing with long-term care needs.
- Nurses and Nurse Practitioners
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For ongoing care, patient education and coordination of services.
- Physiotherapists
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Supporting rehabilitation, particularly post-surgery, to aid functional recovery.
- Endocrinologists
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Managing hormonal and fertility-related issues due to bladder exstrophy’s impact on sexual health and reproduction.
- Patient Navigator
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Supports patients and families throughout their journey. Our navigator can assist with making appointments, connecting families with resources and support, navigating problems with insurance and billing, facilitating communication between families and the medical team, and other issues.
Learn More About the UH Rainbow Bladder Exstrophy Program
For more information or to make an appointment call 216-844-8440, option 4.