WARNING: The information in this section is meant as a general guide to help parents and caregivers with common issues and is not intended to replace the care provided by your child’s healthcare team.

Discuss your child’s unique needs with your healthcare team, including WHO and WHEN to contact when problems arise.



Urinary incontinence (leakage) between catheterizations

The urine does not flow or flows more slowly than usual through the catheter

The catheter is difficult to insert

Urine has an unusual odor or is milky, not clear

Bleeding after catheterization

Difficult catheter removal

Skin around the Mitrofanoff stoma is: red swollen itchy, burns, or there are small bumps, abrasions or bleeding

Movement of the Mitrofanoff stoma is more than 0.5 cm from its usual position, whether sinking in or protruding out

Abdominal discomfort; pain and/or burning at the meatus or urethra

Fever with or without malaise: ≥ 38⁰C rectal or ≥ 37.5⁰C oral/armpit


For specific advice on your child or any other questions, do not hesitate to contact your child’s healthcare team.

When to consult your healthcare team


  • The amount of urine collected by catheterization increases or decreases much more than usual, for more than a day and for no apparent reason.
  • Urine changes color, appearance or smells bad as compared to what is normal for your child.
  • There is no flow of urine through the catheter for a longer period of time than what has been recommended by the healthcare team.
  • The flow of urine through the catheter is much slower.
  • Your child has urinary incontinence between catheterizations.


  • You are unable to insert or remove the catheter.
  • The stoma is bleeding more than a few drops and does not stop.

Mitrofanoff stoma

  • The skin around the stoma is red or irritated (small bumps or skin injury).
  • The stoma changes appearance.
  • The stoma protrudes or sinks in more than 0.5 cm.

General state

When your child has any of the following symptoms or signs:

  • tummy pain,
  • your child has a stomach ache and feels uncomfortable,
  • frequency: feeling the urge to pee more often,
  • fever (rectal ≥ 38⁰C or oral/armpit ≥ 37.5⁰C),
  • nausea or vomiting,
  • dysuria: pain when passing urine,
  • general irritability, poor appetite, tiredness or wanting to sleep more than usual.

Do not hesitate to contact your healthcare team about any questions concerning your child.