https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/spina-bifida-bladder-and-urinary-monitoring/

Spina bifida: bladder and urinary monitoring

Spina bifida and the urodynamics team at Great Ormond Street Hospital (GOSH). Find out what we do, why caring for the bladder is important and what to expect in the early days.

Introduction

Receiving a diagnosis of spina bifida can feel overwhelming, whether you're expecting your baby or have just welcomed them. It’s natural to have questions and concerns about what this means for your child and family.

The urodynamic team specialise in caring for your newborn’s bladder and urinary health. We work closely with a team of experts from different specialties to give your child the best possible start.

Why is caring for the bladder so important?

Spina bifida can affect mobility and mental development, but it can also affect the nerves that control bladder function. These nerves are responsible for communicating with the brain about storing and releasing urine. When this communication is disrupted, it can lead to complications including:

  • Urine leaks or incontinence (unintentionally weeing).
  • The bladder not emptying completely.
  • Frequent urinary tract infections (UTIs).
  • Backflow of urine to the kidneys, which can lead to long-term kidney damage.

It is therefore very important that we monitor and support your child’s bladder health from the beginning. This helps to protect kidney function, lower the risk of infections, and promote overall comfort and well-being.

What will care look like?

The scans and timeline below give a general idea of what monitoring may look like across the first two years of life. Your child’s schedule may look slightly different, as it will be tailored specifically to their care needs.

After birth

After birth, our team will:

  • Observe how often your baby wets their nappy and if there are any periods of dryness.
  • Track bowel movements and other signs of bladder activity.
  • Perform an ultrasound to check the shape and condition of the bladder and kidneys.

If your baby has a catheter is in place, we will assess how often your baby wees once the catheter is removed. An ultrasound scan is done to check bladder and kidney condition.

If your child’s bladder is emptying well, no immediate treatment is needed. We will reassess their bladder at the first follow-up appointment.

If bladder emptying is incomplete, we may begin using a soft tube to help drain the urine. This is known as clean intermittent catheterisation (CIC). Our Clinical Nurse Specialists (CNS) will teach you how to use CIC and provide ongoing support.

At six to eight weeks

Your baby will have a:

  • Ultrasound: To visualise the kidney and bladder to see how well they are doing.
  • Micturating cystourethrogram (MCUG): This is a special type of X-ray, which allows us to see how the bladder fills and empties in real time. A small catheter is used to gently fill the bladder with a warm liquid that is visible on the X-ray images.

The day before the MCUG your child will need to take double their daily dose of antibiotics.

  • Bladder function assessment (BFA): We’ll discuss what you’ve noticed about your child’s peeing, and whether the bladder needs support. We’ll do some non-invasive tests to better understand how the bladder is working.
  • Outpatient appointment: We will review the test results and discuss the next steps with you. Based on the findings, we may adjust the treatment- this could include starting catheterisation or medication, to support optimal bladder function.

At six months

Your baby will have:

  • A DMSA scan. This is a specialist scan to look at how each kidney is working.
  • A follow up ultrasound and BFA.
  • An outpatient appointment. To assess developments over the first six months and to discuss if we need to make any changes to treatment.

At nine to 12 months

  • A follow up ultrasound and BFA.
  • An outpatient appointment. To assess progress, discuss any adaptions needed and plan further treatment.

At 18 months

  • A follow up ultrasound and BFA.
  • An outpatient appointment. To reassess bladder and kidney function, and to discuss treatment.

At two years

  • A follow up ultrasound and BFA.
  • An outpatient appointment. To reassess bladder and kidney function and to determine if yearly check ups can begin.

After two years

  • Yearly follow up with BFA and outpatient appointments

What are the different treatment options?

Antibiotic prophylaxis

A low daily dose of antibiotics may be given to prevent infections, especially in children with a neuropathic bladder or those using catheters. This helps protect the kidneys and keep your child free of infection. The duration of prophylaxis depends on your child’s individual needs and is reviewed at each outpatient appointment.

Medical treatment

Depending on your child’s needs and test results, additional medications may be recommended to help the bladder relax and hold more urine or to help with emptying.

These medications are not required for every child, but when used appropriately and consistently, they support healthy bladder function and help protect the kidneys, often alongside catheterisation.

Bowel management

Children with spina bifida may have difficulty with pooing regularly. A consistent routine including regular toilet times, good hydration, fibre intake, and occasional rectal treatments can help prevent constipation and reduce pressure on the bladder.

Laxatives may also be used to keep pooing regular and reduce pressure on the bladder. These may include poo softeners, stimulants, or osmotic agents, depending on your child’s needs.

Clean intermittent catheterisation (CIC)

CIC is a safe way to help your child fully empty their bladder using a soft catheter which is passed through your child’s urethra into the bladder. It is performed several times a day and can become a regular, manageable part of daily life. It helps prevent infections, protects the kidneys, and can improve your child’s comfort.

We understand that CIC may feel overwhelming at first. We typically introduce it in the newborn period, when children adjust more easily. We will teach and support you to perform CIC confidently. Older children often learn to do it themselves independently.

Surgical treatment

If medications and catheterisation are not sufficient, surgery may be considered to:

  • Help the bladder store more urine.
  • Improve bladder emptying.
  • Make catheterisation easier.

Surgery will only be recommended when it is necessary and it will be carefully planned to suit your child’s specific needs, with the aim of preserving long-term bladder and kidney health.

Information about Clean intermittent catheterisation (CIC)

No, CIC is not painful when done correctly. It might feel unusual at first, but most children adjust well. Your nurse will teach you step by step.

Urine should start to flow once the catheter is gently inserted. If not, pause and try again. Your nurse will show you what to expect and what to do if it’s not working.

We understand that CIC can seem invasive and we only advise to start CIC when really needed. We typically introduce it in the newborn period, when children adjust more easily. The early start allows children to grow up with CIC as a normal part of their daily life.

It’s common for children to not want CIC at times. Try making it part of a routine, use rewards, or let your child help with steps when they’re ready. Our team can offer ideas or involve play therapy.

Yes. CIC can be done anywhere with clean hands and supplies. Bring extra catheters, wipes, and a travel-sized hand sanitizer. We can provide a travel letter if needed for flights or border checks.

Information about medication

Low-dose daily antibiotics can help prevent urinary tract infections (UTIs), especially if your child is using a catheter or has had infections before.

The healthcare team carefully monitors for side effects or antibiotic resistance. Antibiotics are only used when needed and are reviewed often.

These medicines help relax the bladder muscle, stop sudden leaks, and protect the kidneys by keeping bladder pressure low.

Possible side effects include dry mouth or constipation, but they’re often mild. Let your doctor know if you notice anything new.

Alpha blockers relax the bladder outlet muscles to make urination easier. They help prevent pressure build up and protect the kidneys.

Information about daily life

With good care, children with spina bifida can lead active, happy lives at school and beyond. Support and planning help make daily routines easier.

With good care, children with spina bifida can lead active, happy lives at school and beyond. Support and planning help make daily routines easier.

Yes! With good planning (for example, emptying the bladder before activity), most children can fully participate in physical activities and social events.

Some children can use the toilet independently, whilst others may need long-term help. We’ll support your child’s development and independence at every step.

Be open, calm, and encouraging. Let your child ask questions and involve them in care when ready. Remind them they are not alone- many children manage similar routines.

You can share what’s needed for your child’s care for example toileting schedule or signs of infection. We can help provide a care plan or letter for staff and offer training if needed.

Information about allergies and infection

Children with spina bifida and regular contact to latex are more likely to develop an allergy with associated reactions and impairment. That is why we use latex-free products from the very beginning.

Look out for:

  • Fever
  • Cloudy or smelly urine
  • Pain or discomfort when peeing
  • Fewer wet nappies than usual

These may be signs of infection or bladder problems. If you notice any of these signs contact your child’s GP and then let us now via MyGOSH or the contact details provided at the end of this leaflet.

Glossary

BFA (bladder function assessment)

A simple, non-invasive check to see how well your child pees and if the bladder empties properly, based on things like nappy use, urine amount, and timing.

Ward urodynamics

A detailed urodynamic test done in hospital. A soft tube fills the bladder with fluid while pressure and bladder activity are measured.

Videourodynamics

An advanced urodynamic test combining bladder pressure monitoring (ward urodynamics) with imaging (X-rays) to see how urine flows and if there are problems during filling or peeing.

Uroflow (uroflowmetry)

A simple test where your child pees into a special toilet that measures how fast and how much urine comes out.

Ultrasound

A safe scan that uses sound waves (no radiation) to create images of the kidneys and bladder, often used to check structure and growth.

MCUG (micturating cystourethrogram)

A test where a small tube is placed in the bladder to see how it fills and empties on X-ray. It helps check bladder function and reflux. A short antibiotic course is given to prevent infection.

DMSA scan

A scan that shows how well each kidney works using a safe, low-dose radioactive dye and images taken a few hours after application.

CIC (clean intermittent catheterisation)

A clean and safe way to empty the bladder using a thin tube (catheter), done several times a day if your child can’t fully empty their bladder on their own.

Outpatient appointment

A clinic visit where you and your child meet the doctor to review test results, talk about symptoms at home, and plan any needed treatment or follow-up.

Contact information

If you have any questions or queries, you can contact Urodynamics daycare:

Telephone: 020 7829 8884

Written by: Urodynamics team

Reference number: 1225CWT0042

Last reviewed: December 2025

Next review due: December 2029