Neurogenic Bladder | Overview
A common concern of parents whose children have been diagnosed with neurogenic bladder dysfunction is the question: “Will my child still be in diapers when he’s school age?”
The short answer is: most likely, no. While it’s impossible to say that your child will never have an accident, a neurogenic bladder can be managed with medication, catheterization and/or routine examinations by his doctors, ensuring that your child will live as normal a life as possible.
Here’s what you need to know about neurogenic bladder:
Neurogenic bladder is a urinary tract dysfunction in which the bladder doesn’t empty, properly due to a neurological condition or spinal cord injury.
The condition may be caused by a birth defect, usually one involving the spinal cord, or it may be acquired as the result of a different problem.
While neurogenic bladder can’t be cured, necessarily, it can most definitely be managed.
Most cases of neurogenic bladder can be managed with medication and intermittent catheterization.
The minority of children with the condition need major reconstructive surgery.
How Boston Children's Hospital approaches neurogenic bladder
As the largest pediatric urology service in the world, Children’s Department of Urology performs more than 3,000 surgical procedures each year and cares for almost 18,000 children. Our team of pediatric urologists have extensive experience treating children with neurogenic bladder dysfunction.
The reality is that neurogenic bladder dysfunction is almost always part of a larger problem; it rarely, if ever, occurs on its own. It’s a common complication of spina bifida (myelodysplasia), a condition in which there’s abnormal development of the spinal cord, and can also be a complication of spinal cord trauma, tumors in the central nervous system and pelvic tumors. Children's has one of the country’s oldest and largest comprehensive interdisciplinary centers for the care of children with spina bifida.
Our doctors take a multidisciplinary approach to diagnosing and treating your child’s neurogenic bladder, enlisting care from doctors and nurses from Boston Children's Departments of Neurology, Urology, Complex Care Pediatrics, Neurosurgery, Nephrology, Gastroenterology, and Pediatric Surgery.
Neurogenic Bladder | Symptoms & Causes
Neurogenic bladder is a urinary tract dysfunction in which the bladder doesn’t empty properly due to a neurological condition or spinal cord injury. To understand the condition, it’s important to know how the bladder works:
- Normally when it’s time to urinate, the brain signals the bladder muscles to tighten to squeeze urine out of the bladder; at the same time, the brain signals the sphincter muscles to relax and let urine exit the bladder through the urethra.
- In a child who has neurogenic bladder dysfunction, the nerves that are supposed to carry these messages don’t work properly, essentially paralyzing the bladder. Symptoms include urine leakage, urine retention, and infection of the bladder or ureters.
What are some major misconceptions about neurogenic bladder?
There are many misconceptions about neurogenic bladder, including:
- Neurogenic bladder is untreatable: Many parents worry that neurogenic bladder is a diagnosis of a lifetime of incontinence. This isn’t true. While neurogenic bladder can’t be cured necessarily, it can most definitely be managed.
- Most patients need surgery: This is also false. Most cases of neurogenic bladder can be managed with medication and intermittent catheterization. The minority needs major reconstructive surgery.
- Frequent catheterization can lead to constant infection (and that your child will always have a urinary tract infection): While intermittent catheterization is associated with a higher risk of infection, these risks can be regulated with medication and/ or prevented with antibiotics.
What causes neurogenic bladder?
In children, a neurogenic bladder may be caused by a birth defect, usually one involving the spinal cord, or it may be acquired as the result of a different problem. Here we look at some of the most common causes of neurogenic bladder:
- spinal cord trauma
- central nervous system tumors
- pelvic tumors
- spina bifida (myelodysplasia): A birth defect in which the spinal canal does not close completely, exposing the developing spinal cord to injury. Some types of spina bifida are obvious at birth, while others are subtle and only detected by careful inspection of the spine and legs. Spina bifida accounts for 90 percent of cases of neurogenic bladder.
What are the symptoms of neurogenic bladder?
Each child may experience symptoms differently. Symptoms may include:
- urinary incontinence: Your child may feel the need to urinate frequently and with urgency, as well as experience small urine volume during urination, dribbling urine and loss of sensation of bladder fullness.
- urinary tract infection: An infection can result from urine being held in the bladder too long.
- kidney injury: These occur as a result of high pressures caused by urine back-up in the bladder.
- kidney stones: These may be difficult to diagnose because your child may not be able to feel pain associated with kidney stones if they have spinal cord abnormalities. Symptoms of kidney stones include:
- blood in urine
- fever and chills: This indicates a urinary tract infection caused by an obstructing stone.
Q: Is neurogenic bladder permanent?
A: We don’t know. Generally speaking, changes can occur over the lifetime of your child, and that’s why we’re committed to following him throughout his childhood, adolescence and young adulthood. We will monitor your child closely: Sometimes things change for the better and sometimes for the worse. Unfortunately, we don’t have a good way of predicting when that’s going to happen. What we do know is that in the past, spina bifida almost always led to a life of incontinence; this is no longer the case.
Q: How will you follow my child’s progress?
A: In general, we test more often in early childhood than in later childhood. Testing can include ultrasounds—to make sure the kidneys look healthy—and urodynamics studies. Urodynamics (filling your child's bladder with warm saltwater) will tell us how the bladder and urethral sphincter are functioning. In the first few years, we test patients every six months; after that, it’s yearly; and then, if all looks good, we’ll test every other year for a number of years. Other tests can be done like the VCUG (an x-ray exam of your child’s bladder and lower urinary tract), but those are not as common.
Q: Will my child need frequent catheterization?
A: The vast majority of patients with either spina bifida or spinal cord injuries will need catheterization. In these patients, the bladders are often smaller and harder than they should be and more active than usual. The bladder should be a soft, low-pressure reservoir that empties every 3 to 4 hours in order to be able to achieve continence; and in most cases of patients with spina bifida or spinal cord injuries, this is only achieved through medication and intermittent catheterization.
Q: My child is urinating on his own; his diaper is often wet. Is catheterization still necessary?
A: A good number of patients will have miscommunication between their bladder and their sphincter. That results in very high pressure in the bladder, which can destroy kidney function, and so in these cases we continue to recommend intermittent catheterization. Intermittent catheterization is really a very good thing. It used to be that kids with spina bifida didn’t live to see their 20s. Now they do, and that’s because of intermittent catheterization.
Q: Will my child ever be fully toilet-trained?
A: In the strictest sense, no. If there is a full-on case of neurogenic bladder, patients will not be using the toilet in the same way as patients without neurogenic bladder.
Q: Are neurogenic bowels a concern?
A: Yes, most patients with neurogenic bladder have parallel cases of neurogenic bowels.
Q: Is neurogenic bladder curable?
A: No. We can’t reverse spina bifida or neurogenic bladder, but we can provide all the tools necessary to manage your child’s condition—to encourage continence and protect the kidneys—and give him as normal a life as possible.
Neurogenic Bladder | Diagnosis & Treatments
How we diagnose neurogenic bladder
The first step in treating your child is forming an accurate and complete diagnosis. The symptoms of neurogenic bladder often resemble those of other health conditions, so your child's physician will need to take a complete medical history and do a careful physical examination to rule out other medical issues. Specific diagnostic procedures for neurogenic bladder may include:
- A urodynamics study: Your child's bladder will be filled with warm saltwater to assess how the bladder and urethral sphincter function during the stages of bladder filling and emptying. At the same time, bladder volume and pressure are measured, as well as the tone or amount of contraction of the bladder. In some instances, urodynamics testing might include an EMG (an electromyogram using needle electrodes) of the sphincter, performed by a neurologist.
- Radiologic testing: This includes an ultrasound or a voiding cystourethrogram (VCUG), which is an x-ray exam of your child’s bladder and lower urinary tract that uses a special form of x-ray called fluoroscopy. This makes it possible to see internal organs in motion.
After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.
How we treat neurogenic bladder
Your child's treatment for neurogenic bladder may include:
- insertion of a very small catheter, or hollow tube, to empty the bladder at regular intervals
- antibiotics to prevent urinary tract infection
- medication to help relax the bladder
- surgery to enlarge the bladder if it is very small and not responsive to medication
- surgery to insert an artificial sphincter or a bladder neck sling, both of which can be used to prevent urinary incontinence
In caring for patients affected by neurogenic bladder, what sets Boston Children's apart are innovations in two key areas:
- Tissue engineering: Typically, surgeons use a patient's intestinal tissue to enlarge the bladder. However, the incompatibility of intestinal tissue and bladder tissue can lead to complications. At Boston Children's, we've pioneered innovations in engineering tissue (growing tissue in the laboratory using the patients' own cells).
- Using special techniques, our doctors can grow enough of the patient's own bladder tissue to enlarge or replace the bladder.
- The world's first recipients of tissue augments to enlarge the bladder were at Boston Children's.
- In conjunction with the Harvard Stem Cell Institute, we are testing the use of embryonic stem cells and induced pluripotent stem (iPS) cells to augment bladder tissue, as well as the use of novel materials, like silk.
- Urodynamics testing: Our long-standing Neurourology Unit comprehensively evaluates children's lower urinary tract. We offer urodynamics testing in both Boston and Waltham to closely evaluate how the bladder carries out its two main functions: filling and emptying. The results of this testing allows your child's physicians to better diagnose and treat a neurogenic bladder.
Neurogenic Bladder | Research & Clinical Trials
Boston Children's Hospital is continually working toward faster, more accurate diagnoses and more effective treatments for children with urologic disorders. Recent areas of research that our Department of Urology has conducted that hold promise for improving the lives of children with neurogenic bladder include:
- Tissue engineering: Typically, surgeons use a patient’s intestinal tissue to enlarge the bladder. However, the incompatibility of intestinal tissue and bladder tissue can lead to complications. At Children’s, we’ve pioneered innovations in engineering tissue (growing tissue in the laboratory using the patients’ own cells).
- Using special techniques, our doctors can grow enough of the patient’s own bladder tissue to enlarge or replace the bladder.
- The world’s first recipients of tissue augments to enlarge the bladder were at Children’s.
- Stem cell research: In conjunction with the Harvard Stem Cell Institute, we are testing the use of embryonic stem cells and induced pluripotent stem (iPS) cells to augment bladder tissue, as well as the use of novel materials, like silk.
Read more about our Department of Urology.