Understanding that children with bladder exstrophy are on a unique journey, the Department of Urology at Boston Children's Hospital has pioneered efforts in the support and psychosocial development of patients with bladder exstrophy. Founded at Boston Children's in 1992, our program serves as a place for families to learn and receive emotional support. It also gives parents and their children a place to meet others who have shared similar experiences.
The Exstrophy Support Group is a combined effort of the Department of Urology, the Center for Families, our surgical programs, nursing, child life specialists and Boston Children's volunteers.
We provide education and interaction:
- family-to-family networking
- guest speakers
- teen chats
- medical play for younger children
The support group meets three to four times a year on a Saturday. The meetings are free for families and include breakfast and lunch. The children have scheduled activities and meet in an adjoining room to where the parents meet.
Recent support group topics:
- complete primary care of exstrophy
- clinical guidelines for care
- development of the Exstrophy Clinic
- bladder neck reconstruction
- strategies for helping children to cope with bladder exstrophy
Additionally, Boston Children's offers a family-to-family program, which connects families with experienced, trained volunteer families whose children have similar issues, including:
- ongoing reconstructive surgery, especially in adolescence