Resources

Northwest Exstrophy Support Group

We provide:

Positive mutual support to the families and patients with exstrophy and related urologic conditions
Educational services to parents
Networking and resources to families

Patient Education Materials

Bladder Health Video (WMV): This 20-minute video teaches you and your child about bladder health. This video was developed by clinical staff from Children’s Hospital and covers the anatomy and physiology (function) of the urinary tract. It also helps parents understand the reasons behind urgency, wetting accidents and urinary tract infections.
Bladder Exstrophy (PDF 61KB) (Español): Defines bladder exstrophy and discusses the problems a baby with bladder exstrophy or cloacal exstrophy may have. Describes treatment for bladder exstrophy.
Bowel Clean Out with Magnesium Citrate (PDF 53KB) (Español): Instruction on how to do a bowel clean out to prepare for surgery and when to call your child's doctor.
Circumcision Discharge Instructions for Home (PDF 45KB) (Español): Explains how to care for the surgery site, how much activity your child can do and when to call the doctor.
Cytoscopy Discharge Instructions (PDF 49KB): Explains what to expect after cystoscopy, including what your child may eat and what activities are OK and when to call the doctor
Daytime Wetting (PDF 135KB) (Español): Discussion of daytime wetting and suggestions for good bowel and bladder toileting habits to prevent urine accidents.
Foods That May Irritate Your Child's Urinary Tract (PDF 27KB): A list of foods that can be irritating to the urinary tract.
Hydrocele Repair Discharge Instructions for Home (PDF 61KB) (Español, Russian): Explains when your child may eat, levels of activity, how to care for the surgery site, what to do for pain and when to call the doctor.
Hypospadias (PDF 64KB): Covers what hypospadias is, why it's a problem and surgical repair.
Hypospadias Repair: Discharge Instructions for Home (PDF 260KB) (Español): How to care for your child after hypospadias repair. Discusses the incision and dressing, pain, activity, and when to call the doctor.
Laparoscopic and Robotic Surgery (PDF 36KB) (Español): Explains how Laparoscopic and robot-assisted surgery are less invasive and help your child recover more quickly.
Latex Allergy (PDF 44KB): Discusses allergies to latex, who's at risk, how to lower your child's risk, and what to do if your child is latex-allergic.
Indwelling Urinary Catheter Care (PDF 51KB) (Español): How to care for an indwelling urinary catheter. Includes what to watch for in case of infection.
Mitrofanoff Channel (PDF 94KB) (Español): Defines the mitrofanoff channel and explains the procedures and benefits.
Orchiopexy Discharge Instructions (PDF 92KB) (Español, Russian): Explains when your child may eat, levels of activity, how to care for the surgery site, what to do for pain and when to call the doctor
Pain Control for Short-term Acute Pain (PDF 215KB) (Español | Russian | and Vietnamese): At-a-glance summary of key issues central to controlling your child's
Urinary Reflux (PDF 188KB) (Español): Describes urinary reflux from the bladder to the kidneys (vesicoureteral reflux) and how it is treated.
Urinary Tract Infections (PDF 192KB) (Español, Russian): A discussion of urinary tract infections and their treatment. Includes recommendations for bladder retraining and good toileting habits.

Children's provides health care for the special needs of children regardless of race, sex, creed, ethnicity or disability.
Financial assistance for medically necessary services is based on family income and hospital resources and is provided
to children under age 21 whose primary residence is Washington, Alaska, Montana and Idaho.