Neurogenic bladder: a short introduction for parents & guardians

Neurogenic bladder is a urinary tract dysfunction where the bladder does not empty properly, usually due to problems of the spinal cord and nervous system.

Often (but not always), the bladder muscle is called “weak” because it does not generate enough force to push out urine.

In some children, there is also obstruction because the urethral sphincter, which is supposed to relax to let out urine, fails to relax, and is called hyper/ overactive.

What causes neurogenic bladder?

The most common cause of neurogenic bladder is birth defects related to the spine.

Usual causes include:

Trauma to the spinal cord
Tumors of the central nervous system (brain and spinal cord)
Pelvic tumors
Spina bifida/myelodysplasia. This is a condition where the spinal canal doesn’t close completely, which exposes the developing spinal cord to injury. Most types are easily obvious at birth, but some only become obvious later in life.

What happens to the urinary tract?

In some children with inborn problems, problems may not be evident right away.

However, with time, the bladder is shown not to empty properly.

As a result, there can be complications to the bladder, including:

Difficult toilet training, or regression in toilet training
Uncontrolled urination (incontinence)
Difficult urination
Bladder overdistension, even rupture
Urinary tract infections

The kidney also suffers due to neurogenic bladder. Pressure from poor emptying of the bladder has the following effects on the kidney:

Long-term kidney damage
Recurrent urinary tract infections, which also cause kidney damage
“Vesicoureteral reflux” where urine from the bladder abnormally flows back to the kidney, causing infections and potential kidney damage
Hypertension
Urinary tract stone formation

How will my child be evaluated for neurogenic bladder?

There are many different tests that are done to evaluate neurogenic bladder. These include:

An ultrasound of the kidney and the bladder to check for dilation or back-up of urine in the kidneys.
Serum creatinine and cystatin C are blood tests that may be done to check your child’s kidney function.
Imaging of the spine is done to establish the specific problems of the spine. In little babies this can be checked with a spinal ultrasound, but most children need an MRI (magnetic resonance imaging) of the spine.
Voiding cystourethrogram (VCUG) may be done. This is an x-ray test where contrast or dye is inserted into the bladder. It can give information on the appearance of the bladder or the presence of reflux, as described.
Urodynamics studies are specialized studies of the urinary tract. One catheter each is inserted in the bladder and rectum, and then connected to a machine. The machine allows us to understand the ability of the bladder to empty on its own, as well as any dangers posed by high bladder pressures to the urinary tract.

Can neurogenic bladder be cured?

For some patients with reversible causes of neurogenic bladder—like a tethered spinal cord—some degree of neurogenic bladder dysfunction can be normalized.

However, most patients with neurogenic bladder cannot be “cured”. On the other hand, the condition can be managed with medication and intermittent catheterization.

What are our goals when treating neurogenic bladder?

The goals include

Protection or preservation of existing kidney function
Prevention of further damage to the kidneys by preventing high bladder pressures and UTIs
As the child grows older, we seek to provide the ability to be “socially dry”, or to be able to be continent / without diapers
We seek to try to give the child some independence in managing their own condition

What medications can be used for neurogenic bladder?

Medications from a urology standpoint often include anticholinergics, which are medications that can “Relax” the bladder to avoid high pressures, which allow us to protect the kidney. These include medications like solifenacin, dicycloverine, oxybutynin, and others.

In older children, beta3 agonists, like vibegron and mirabegron, can be used for the same purposes.

These medications are not designed to “make” the child pee independently, but rather are used to relax the bladder and give it more capacity, helping with continence.

More recently, botulinumtoxin or “Botox” has been used to relax the bladder temporarily.

How is the bladder supposed to drain?

Because children with neurogenic bladder cannot empty their bladders on their own, they will need help.

At first, we can place an “indwelling” Foley catheter to drain the bladder and allow the pressures to decrease. Over time, though, any indwelling catheter causes a risk of infections, stone formation, and cancer in later life (due to chronic irritation of the bladder).

As such, we try to avoid placing a child on indwelling catheters for a long time. So, in young children, there are options:

1. Surgical diversion: Temporarily allowing the bladder or the kidney to drain directly to the outside using a “vesicostomy” or “ureterostomy”.

The bladder or the ureter, respectively, is brought to the skin, allowing the urine to just drain easily, bypassing the difficulty of the bladder. However, most of the time, we try to reverse this in early school age to allow the child to grow up without diapers.

2. Clean intermittent catheterization is the gold standard for lifelong management of neurogenic bladder.

Rather than keeping a catheter permanently in the bladder, a catheter is inserted at regular intervals (usually every 3-4 hours, depending on the child) to drain urine.

At first children will need help doing this through their parents and caregivers. However, they often gain independence in doing so, allowing them to go to school and to do usual activities in between catheterizations.

Read our beginner's guide to clean intermittent catheterizations here.

Will my child need surgery?

Not all children with neurogenic bladder will need surgery. As long as medications and catheterizations are feasible for the child, most children will not require invasive surgery of the urinary tract.

What else will my child need?

Neurogenic bladder rarely occurs in isolation. Most of the time, it also occurs with neurogenic bowel, or the inability to empty the bowels.

For this reason, children with neurogenic bladder need lifelong care by a multidisciplinary team, often involving urology, neurology, neurosurgery, gastroenterology, nephrology, and general surgery. Parents and children also benefit from psychological support and peer support.

Can my child grow up “normal”?

Most children with neurogenic bladder can grow up to lead fulfilling and independent lives. Most of them also gain independence with managing their bladder and bowels. However, they will continue to require lifelong follow-up with their pediatric and, later, adult providers.

The information in this infographic is for general information purposes only.

We encourage you to seek an individualized consult for the most appropriate management. You may book an appointment with us or with your preferred pediatric urologist or pediatric surgeon.

Please feel free to send us a message for questions on pediatric urologic health!