Bladder Exstrophy Care & Support Group
Exstrophy support
The support group for children with Bladder Exstrophy and their families was founded at Boston Children's Hospital 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 Department of Urology at Children's has pioneered efforts in the support and psychosocial development of patients with bladder exstrophy. The Exstrophy Support Group is a combined effort of Children's Department of Urology, the Center for Families, our surgical programs, nursing, child life specialists and Children's volunteers.
We provide education and interaction:
- Parent-to-parent 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
- The development of the Exstrophy Clinic
- Urodynamics
- Bladder neck reconstruction
- Strategies for helping children to cope with bladder exstrophy
Additionally, Children's offers a family-to-family program. This provides support for families by connecting them with experienced, trained volunteer families, whose children have similar issues, which may include incontinence, catheterization, reflux and on-going reconstructive syrgery, especially in adolescence and infertility in some males.
Children with bladder exstrophy are on a unique journey and our program strives to truly support them every step of the way. Families are encouraged to raise any issues they have with our support group, as our hope and goal, is that they will not feel alone.
