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:
There are many misconceptions about neurogenic bladder, including:
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.
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.
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.
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.
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.
Yes, most patients with neurogenic bladder have parallel cases of neurogenic bowels.
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.
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:
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:
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.
Your child's treatment for neurogenic bladder may include:
In caring for patients affected by neurogenic bladder, what sets Boston Children's apart are innovations in two key areas:
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.
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:
Read more about our Department of Urology.