The Bladder Exstrophy Program at Boston Children’s Hospital specializes in the care of children with bladder exstrophy, a rare and complex birth defect in which the bladder is turned "inside out." As an established and dedicated program within the Department of Urology, we have decades of experience performing surgeries and managing the care of patients with bladder exstrophy. We are a destination for patients and families of children with bladder exstrophy from across the country and around the world.
Our approach to bladder exstrophy
In the Bladder Exstrophy Program, we take a whole-child, team approach to care. Although the program is led by urologists, we draw on the expertise of many different specialists, including anesthesiologists, gynecologists, orthopedists, physical therapists, and radiologists. We also work closely with our colleagues in Boston Children’s Colorectal and Pelvic Malformation Center, Urodynamics Program, and Fetal Care and Surgery Center. Together, we create a care plan that takes your child’s individual needs into account.
Surgical reconstruction of bladder exstrophy is the most critical step in your child’s care. There are varied approaches for both technique and timing for this initial surgery. At Boston Children’s, our preference is to repair your child’s exstrophy in a single operation that combines closure of both the bladder and urethra at the initial surgery. Surgery takes place eight to 12 weeks after your child is born so your baby can grow, develop, and bond with you. After the surgical repair, we closely monitor your child's development, growth, and overall health, with particular attention to bladder and kidney function.
Psychosocial support for bladder exstrophy
The care we provide extends well beyond surgical treatment. We believe psychosocial and emotional support are crucial as you and your child cope with the challenges of this condition. The Bladder Exstrophy Program team includes a dedicated social worker, as well as a psychologist, who will partner with you and your family to ensure your child’s needs are met, every step of the way. These needs may include care coordination, coping, orientation with hospital services, support groups, identification of community programs, or support with school transitions. We work closely with other Boston Children’s programs including the Hale Family Center for Families, Child Life Services, Department of Spiritual Care (chaplaincy), and Child Psychiatry and Case Management.
Our areas of research and innovation
We are constantly striving to learn more about the underpinnings of bladder exstrophy, epispadias, and cloacal exstrophy — and to enhance treatment. Our areas of research focus include genetics and genomics, improvements in post-operative care, refinements in surgical care, and more.
Patient resources
Our Exstrophy Support Group meets twice a year for a half day and offers patients and their families an opportunity to meet and learn from one another. A typical group may include a presentation, a patient or family panel, and break-out sessions, while children have their own program. In addition, our Family-to-Family Program is available to introduce new patients and their families to experienced family partners.
