Listed below are links to resources for your perusal. Please note that these links are not endorsed by the ABC. Please select from the following:

• Articles
• Books
• Frequently Asked Questions
• Glossary
• Information Available for Download
• Inspiring Stories
• Lending Library
• Link Bank (Exstrophy related links)
• Supplies
• Videos / DVD's
• Webcasts

Articles

• Use of Botulinum Toxin in Exstrophy
• Preparing Your Child for Bladder Neck Reconstruction
• Advice on Privacy: When do you let people know about your child’s condition and to whom should you reveal it?
• Prenatal Detection of Bladder Exstrophy
• Sibling Issues
• Fertility and the Bladder Exstrophy Patient
• Gender Reassignment
  • "Into the Hands of Babes" - a link to an article that appeared in Johns Hopkins Magazine talking about gender reassignment in children born with ambiguous genitalia.  
  • The Genesis of Gender Identity in the Male: Prenatal Androgen Effects on Gender Identity and Gender Role
  • The True Story of Joan/Joan
  • The Imposition of Gender: Psychoanalytic Encounters with Genital Atypicality

Books

• A Story About You....and the Boo-Boo on Your Bladder
  An eight page children's picture book written to teach children ages 3-6 about bladder exstrophy. Written by a fellow ABC member, Cathy Brehm. 
• This is Me!
  Written to help children begin to understand bladder exstrophy and its implications and to give children a tool to prepare themselves for interactions with people outside of their own family.
• Living With Bladder Exstrophy
  This manuscript is the first to address the medical, psychosocial, and emotional aspects of bladder exstrophy in an extensive and detailed fashion. It combines the opinions and stories of family members with information from some of the country's leading healthcare experts on this condition, in order to provide every family with new ideas, different treatment options, increased information, and the support of knowing that they are not alone in their situation. By providing positive solutions to difficult problems, this book encourages hope for each family and child. Please note that this book comes FREE with your membership to the ABC. 
• Living with A Brother or Sister with Special Needs: A Book for Sibs
• Views from Our Shoes: Growing up with a Brother or Sister with Special Needs 

Information Available for Download

• ABC Newborn Packets
• Care Notebook (for Parents to Track Children's Medical Care)
• Care Plans Document
• What to Bring to the Hospital
• Pamphlets available from United Ostomy Association (UOA)
  • Surgical Options for Bladder Diversion
    A small brochure that briefly explains the surgical choices of continent urinary reservoir and the conventional urostomy.
  • Urostomy Guide -- by Katherine F. Jeter, Ed.D., ET.
    Covers normal urinary system function, reasons for and types of urostomy surgery, basic urostomy care and potential problems.
  • Mitrofanoff Coloring Book
    Designed to help children and parents learn about self-catheterization through a special abdominal hole called a Mitrofanoff. It gives a clear explanation of how the urinary tract works and a simple demonstration of the catheterization procedure.

Lending Library
Current members of the ABC can borrow DVDs in the lending library for 30 days at no charge. Non-members pay $2.25 for shipping & handling. Currently available in the lending library as follows:

• 2008 Johns Hopkins Hospital Seminar
• 1991 Johns Hopkins Seminar

Listserves

• The ABC email listserve/bulletin board is available to all those interested in sharing information regarding bladder exstrophy, espispadias, and cloacal exstrophy (not just ABC members).

• Adults with Exstrophy Listserve
  This listserve is operated by the Hospital for Sick Children and is maintained by Barbara Neilson, a social worker that works with exstrophy families.  Only adults with exstrophy can join this listserve.  Please email to inquire about signing up.
  
• Children with Exstrophy Listserve
  This listserve is operated by the Hospital for Sick Children and is maintained by Barbara Neilson, a social worker that works with exstrophy families.  Please email to inquire about signing up.
  
• Girls Only Listserve
  This listserve is operated by the Hospital for Sick Children and is maintained and monitored by Barbara Neilson, a social worker that works with exstrophy families.  Only girls (up to 20 years old) with exstrophy can join this listserve.  Please email to inquire about signing up.
  
• Boys Only Listserve
  This listserve is operated by the Hospital for Sick Children and is maintained and monitored by Barbara Neilson, a social worker that works with exstrophy families.  Only boys (up to 20 years old) with exstrophy can join this listserve.  Please email to inquire about signing up.

Supplies

• LLMedico - This site sells incontinence products including underwear for small children and adults
• AstroTech - Lo-Fric Catheters
• OstomyWorld - A Hollister Site, includes educational information about managing ostomies
• Littlekidzco.com - Sells ID pendants with a micro-viewer that can microscopically contain 25 lines of information on your child's medical condition
• Pediatric Vibrating Watches - available from the following:
  • http://www.medicalwatches.com/blue.html
  • http://www.marilynelectronics.com/products/watches/medose-pediatric.htm
  • http://www.epill.com/pediatric.html

Videos

• The Night Before DVD
• Bladder Exstrophy: The Teenage Survival Guide DVD
• Bladder Neck Reconstruction: Is Your Family Emotionally Ready for this Surgery?
• "Catheterization of Continent Urinary Stomas" - Johns Hopkins
• 2009 ABC/HEA International Exstrophy, Epispadias, & Hypospadias Conference Presentations
• 2007 International Conference for Families Living with Exstrophy & Epispadias DVD
• 2005 International Conference for Families Living with Exstrophy & Epispadias DVD
• 2003 International Conference for Families Living with Exstrophy & Epispadias DVD
• 2008 Johns Hopkins Hospital Seminar
• 1991 Johns Hopkins Seminar

Webcasts

• Bladder Exstrophy Webcast
  From Children's Hospital Boston's Center for Bladder Exstrophy Care and Support. Topics discussed include diagnosis, surgical treatment, and lifelong exstrophy management in addition to excerpts of a complete repair procedure.