Living With Bladder Exstrophy

This book 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.

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Table of contents:

1. An introduction to Bladder Exstrophy
   Living with Exstrophy
   Overview of Exstrophy
   How Do I Learn about Exstrophy

2. Medical Care of the child with Exstrophy
   Assembling a Personal Healthcare Team
   Exstrophy:  The Surgery
   The Role of the Surgeon in the Care of a Child with Exstrophy
   Orthopedic Aspects of Surgery
   Surgical Options for the Child with a Failed Staged Exstrophy
   Reconstruction
   Genital Aspects of Bladder Exstrophy

3. The Birth of a child with Exstrophy
   The Early Days with the Newborn
   "Jessica"
   "Destinee"
   "Shawn"
   "The Non-Birth Parent Perspective
   Advice from a Parent
   What Makes our Children Different?
   
   
4. Helping your Baby and Family Thrive
   Maintaining the Balance in Your Life
   Psychological Issues: A Practical Guide
   How Can you Work Full-Time?
   Promoting Resilience in Children with Bladder Exstrophy
   The Benefits of Social Support
   Psychiatric Implications of the Bladder Exstrophy Complex
   
   
5. Illness, Surgery and Hospitalization
   Preparing Your Child for Hospitalization
   Jessica and Another Operation
   Your Child and Anesthesia
   Latex Allergy and Bladder Exstrophy
   Perspectives on Medical Play
   Helping Your Child (and Yourself) Through Hospitalization
   Are You Listening? Am I Hearing?
   Daniel's Story of the Realities of Penile Reconstruction
   The Management of Pain in Children:  A Parent's Guide
   A Father's Perspective
   Life with a Toddler in Spica Cast
   
   
6. Some Challenges of Toileting
   Jessica and Potty Training
   Exstrophy and Clean Intermittent Catheterization
   How Can I Help My Child Understand and Accept
   Catheterization?
   Cathing at School
   Clean Intermittent Catheterization: a Personal Perspective
   Common Treatment Modes for Nocturnal Enuresis
   
   
7. School Days
   Starting School
   Jamie at School: A School Nurse Perspective
   
   
8. The Challenges and Triumphs of Adolescence
   Youths with Bladder Exstrophy: Growing Up Wise and Wonderful
   Reflections of a Young Man with Bladder Exstrophy: "My Teenage Years"
   "When I am Grown Up, Bladder Exstrophy Will Not Be So Hard
   
   
9. From Adults with Exstrophy
   The Challenges of Life with Exstrophy
   More than a "Plumbing Problem"
   Growing Pains
   Marriage, Pregnancy and Childbirth
   
   
10. Cloacal Exstrophy
    Three Special Friends
    Surgical Procedures Related to Cloacal Exstrophy
    Cloacal Exstrophy:  Additional Challenges
    "Rory"
    Gender Considerations in Cloacal Exstrophy
    The Gender Change Issue
    
    
11. Looking to the Future
    Current Research in the Field of Bladder Exstrophy
    The Impact of Technology on the Management of Bladder
    Exstrophy:  Present and Future
    Exstrophy:  The Future