In a healthy urinary system, muscles and nerves work together so the bladder can collect urine and release it at the right time. When the nerves near the urinary tract are damaged or incompletely developed, this balance is disrupted. The result is neurogenic bladder, a complex condition in which the nerves and muscles can’t work together, preventing the bladder and sphincter muscles from functioning properly.
A child with neurogenic bladder can expect to encounter some quality-of-life issues, like not being able to control when or where they urinate. Left untreated, neurogenic bladder can cause severe, even life-threatening, kidney damage. Fortunately, many effective options are available to help with both medical and quality-of-life concerns.
What Causes Neurogenic Bladder?
The most common cause of neurogenic bladder in children is spina bifida, a lifelong condition in which a baby’s spine does not develop properly inside the womb. But spina bifida is not the only possible cause of neurogenic bladder. Other causes include:
- Central nervous system tumors
- Spinal cord injury
- Tethered spinal cord, where the spinal cord has attached itself to other internal structures, preventing the nerves from functioning normally
- Posterior urethral valves (PUVs), extra flaps of tissue that can form in a boy’s urethra (the tube in the penis that carries urine out of the body)
What Are the Symptoms of Neurogenic Bladder?
Neurogenic bladder is a complex condition and each child may show different symptoms. Common problems include:
- Loss of bladder control
- Unexplained daytime wetting
- Leaking or dribbling urine
- Inability to toilet train
- Incomplete bladder emptying
- Blood in the urine
- Inability to control the bowels
- Kidney stones or bladder stones
- Frequent urinary tract infections, especially with fevers
We emphasize to families that bladder control issues don’t automatically mean that a child has neurogenic bladder. These symptoms can also be caused by a variety of conditions, including blockages in the urinary tract.
How Is Neurogenic Bladder Diagnosed?
Many children with spina bifida are diagnosed before birth. In some children, especially those who have severe spina bifida, neurogenic bladder can be diagnosed shortly afterward. In others, neurological damage might not become apparent for months or even years. Sometimes, it’s not until a child doesn’t toilet train at a typical age or is trained and then loses that ability that it becomes apparent that something is wrong.
As part of the evaluation by our team, we will order a variety of tests to see how all the parts of the urinary system are functioning, including:
- MRI of the brain and spine
- Kidney ultrasound (US): a noninvasive scan to assess the health of the kidneys and bladder
- Cystometrogram (CMG): a specialized test of bladder and sphincter function. Requires a catheter (tube) to be placed into the bladder.
- Blood tests to check kidney function
- Urine tests to check for infection
Lurie Children's Division of Urology staff members will work with you to coordinate testing and follow-up visits to ease the process for you. Follow-up visits will be arranged to maximize input from the entire multidisciplinary team, which includes experts from:
- Physical Therapy and Rehabilitation
- Social Work
We will need to monitor kidney and bladder function regularly with repeat CMGs. Younger children with neurogenic bladder may need to be tested every year. We will use US to monitor older children. They may be able to go longer between CMGs if their symptoms don’t change
How Is Neurogenic Bladder Treated?
For most children, our long-term treatment strategy for neurogenic bladder will be to prescribe medications and encourage frequent urinary catheterization (passing a tube several times per day to empty the bladder). If not properly treated,
For most children, our long-term treatment strategy for neurogenic bladder will be to prescribe medications and encourage frequent urinary catheterization (passing a tube several times per day to empty the bladder). If not properly treated, neurogenic bladder can cause permanent kidney damage, and our priority in treatment is to protect the kidneys by preventing the buildup of excessive pressure or infection. We also weigh social and emotional concerns heavily, so the next focus is providing continence of the urine and bowels. We also strive to help older children and teens become independent with their bladder and bowel program.
Recommended medications may include anticholinergics, a type of drug that relaxes the muscle in the bladder. Anticholinergic medicines block the nerve signals that cause bladder muscle contractions. They lower its pressure, which helps protect the kidneys and helps stop urinary accidents. We may also prescribe antibiotics to prevent or treat infection; our philosophy is to prescribe antibiotics as sparingly as possible.
In clean intermittent catheterization (CIC), a catheter (narrow tube or straw) is inserted into the urethra to drain urine. This will usually need to be done every 3-4 hours during the day. In between CIC times, the child resumes their normal activities. Children can usually learn to catheterize themselves once they are school-aged. Expect to assist your child with catheterization until they gain the coordination and maturity to be independent in the bathroom.
Nearly all patients tolerate catheterization well to the point that, as long as children use proper technique and maintain good hygiene, very few restrictions on activity will be needed. For most people with neurogenic bladder, CIC will be the long-term solution for protecting the kidneys and providing urinary continence.
Nearly all children who have neurogenic bladder will also have similar nerve damage of the bowel or sphincter muscle, leading to chronic constipation and/or bowel incontinence. The bladder and the rectum share some common nerves and sensory input. If bowel concerns and urinary incontinence are left untreated, it’s hard to get either one under the best control. Our advanced practice nurses work closely with patients and their families on making behavioral changes, such as setting a daily toilet time to help the child learn to empty their bowels regularly.
For some children, these strategies may not be enough for long-term medical and quality-of-life results. In these instances, we will discuss surgical options. Surgery will be medically necessary if the bladder is putting the kidneys at risk. Surgical options to enhance continence of urine and stool include:
- The Mitrofanoff procedure, which creates a path from the child’s bladder to the outside using the child’s appendix; a catheter near the child’s belly button is used to drain urine directly from the bladder.
- The MACE (Malone antegrade continence enema) procedure uses the appendix to create a catheter channel to deliver fluid directly to the colon to flush out stool while the child sits on the toilet.
- Bladder neck (sphincter) tightening procedures can either be done via open-field surgery or minimally invasive methods.
- Bladder augmentation uses a section of the child’s intestinal tissue to enlarge the bladder when the bladder has high pressures or is too small to hold enough urine.
Make an Appointment
If you’d like to request an appointment with one of our specialists from the Division of Urology, call 1.800.543.7362 (1.800.KIDS DOC®).