Children's Health

Neurogenic Bladder

05/02/2005 10:06AM

Question:

My 2 year old daughter was diagnosed with a neurogenic bladder shortly after birth due to sacroagenesis. At this time the only treatment I have been offered for her by her urologist is Ditropan and CIC, what are other options available? Are there any other options? She does not have reflux, her bladder is constantly contracting. I have been told it is small for her size.

Answer:

The current treatment plan for your daughter's neurogenic bladder is the standard starting place for management. Obviously intermittent catheterization will become more of an issue for both of you as she grows up and enters the world of school and peers.

It is important to speak with a qualified, experienced urological surgeon about the surgical options that would offer alternative care strategies. The goal of all of them is preservation of kidney function and urinary continence. Among the options are cutaneous catheterizable continent stomas, that is a urinary opening on the skin surface, in either the umbilicus (belly button) or on the surface of the abdomen. These can be wonderful options but have a fairly frequent need for a secondary revision due to complications, so it would be important to ask about each individual surgeon's complication rate with each type of procedure.

There are also several surgical options that create an artificial urinary sphincter with seromuscular colocytoplasty or vaginoplasty. These procedures effectively create urinary continence but still require continued intermittent catheterization. Bladder neck reconstruction and bladder augmentation procedures are also available to enlarge bladder capacity and improve continence. These procedures do not work equally as well for every child and surgeon skill and experience are critical variables.

One procedure that is not recommended is endourethral injection of bulking agents. This is an attempt to create bladder continence by increasing pressure around the urethra. Current techniques result in only short term improvement, as few as four days, and have no long term success.

There are also other medications that can be used to reduce bladder dysfunction, however some of them can harm a child's development. If medication changes are considered, it is a very good idea to ask about potential side effects before a change is made.

While there are alternatives to your care regimen, it is important to remember that your daughter is only two-years-old and her body has a lot of growing to do. Larger body size often improves the chances for a successful surgical procedure. All surgeries are more hazardous for young children because of their small airways and greater respiratory vulnerability to general anesthesia. Also many surgical interventions will require revisions to get it right in some percentage of cases even for the best surgeons. The most important thing you can do at this point is to find a pediatric urologist and surgeon you feel truly comfortable with in terms of their skill and knowledge with whom to discuss alternative management strategies.

I also recommend finding a parent support group such as parents whose children have spina bifida, since neurogenic bladders are frequent among these children. These parents will have worked with a variety of urologists and surgeons and can direct you to the best. Both qualified surgeons and parent support groups can be accessed through Ohio's Children's Hospitals, such as Cincinnati Children's, Children's Hospital of Columbus, and Rainbow Babies and Children's Hospital in Cleveland.

I hope this is helpful information and wish you well in your loving efforts to care well for your daughter.

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Response by:

Mary M. Gottesman, PhD, RN, CPNP, FAAN
Associate Professor, Specialty Program Director
Pediatric Nurse Practitioner Program
College of Nursing
The Ohio State University