We understand that you may have a lot of questions when your child is diagnosed with neurogenic bladder: Is it dangerous? Will it affect my child long term? What do we do next? We’ve tried to provide some answers to those questions in the following pages, and our experts can explain your child’s condition fully.
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.
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.
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.
Questions to ask your doctor
After your child is diagnosed with neurogenic bladder, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.
Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.
Some of the questions you may want to ask include:
- What caused my child’s neurogenic bladder?
- What can be done to treat it?
- What should I tell friends and family about my child’s condition?
- Do we need to make any modifications for my child at home?
- How can I best take care of my child?