Resource
Overview
When kids with Spina Bifida grow into teens and young adults, they slowly start to take charge of their own health care. This includes learning how to care for their bladder. Even if they haven’t had any bladder problems before, it’s still important to check their routine and make sure everything is working well.
Getting Started – the Three Ps of Transition
To help your child learn to take care of their bladder health, think about the Three Ps:
Preparation
- You and your child both need time to get ready.
- Your child should start learning about their bladder care, including how and when to do catheterization.
- Parents need to slowly give more responsibility to their child, while still being there to help.
- Encourage your child to ask their own questions. If they want more privacy, offer to let them talk to their doctor alone.
- A good place to start learning is www.gottransition.org.
- Can your child make a phone call to set up an appointment or ask for a refill of their medicine or supplies?
Plan
- If your child is switching from a children’s doctor to an adult doctor, make a plan together.
- How often will they need check-ups?
- What medicines do they need to take regularly?
- Do they need to do catheterization or enemas?
- Will they need any ultrasound/X-rays or other tests?
Provider of the Future
- Who will be the doctor or team helping your child manage their bladder care as they grow up?
- This doctor or team should help your child stick with their health care plan.
Taking Care of Your Bladder (Urological Self-Care)
Most people with Spina Bifida need to use a catheter to empty their bladder. Some people have had bladder surgery to help with this. It’s very important to see the urologist (a doctor who helps with the bladder and kidneys) every year to make sure everything is working well.
Almost everyone who uses a catheter will have some bacteria in their urine. If there are no signs of sickness, this is usually okay and doesn’t need treatment. But if someone has signs like burning when peeing, fever, or feeling sick, it could be a urinary tract infection (UTI) and they should get medicine right away.
Tips for Good Bladder Care
- Always keep catheter supplies clean.
- Don’t rush! Take your time to stay clean and careful.
- Boys and girls may need to do things a little differently to help avoid infections.
- Drink plenty of water every day.
- Eat healthy foods.
Watch Out for Bladder Problems
- Bladder stones can happen when you use a catheter. They can lead to more stones or infections and must be removed.
- Bladder ruptures can happen if the bladder gets too full and is not emptied often enough. They may not cause pain right away but can be very serious.
- Bladder tumors are not common, but they do happen and need to be taken out by a doctor. If you start getting a lot of UTIs, see blood in your pee, or have new pain or other strange symptoms, tell your doctor right away. Don’t wait until your next appointment.
What Makes Urology Transition Hard?
Some teens and young adults have a hard time taking care of their bladder health. They might forget to use their catheter or not want to do it because they feel different from their friends. Some don’t understand why it’s so important. They may think skipping catheter use isn’t a big deal—until a problem happens.
Parents also sometimes have a hard time letting their child take over these health tasks. And for some kids with more serious health or social challenges, it may not be possible to be fully independent. Still, it’s important to help them do as much as they can on their own.
Final Thoughts
Learning how to take care of your own bladder health takes time. It won’t always go perfectly, and that’s okay. Start talking about it early and keep practicing. As you get older, you can learn to take care of yourself and make your own health choices. Most important, know when and who to call if you have a problem.
This information is meant to help, but every person is different. Talk to your doctor or healthcare provider to find out what’s best for you.
Originally created by Earl Cheng, MD, David Joseph, MD, Eric Rovner, MD and unknown other author.
Reviewed and updated by Daniel Wood, PhD, MBBS, FRCS Urology, August 2025
This information does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.
