Children who are born with a neurogenic (non-functioning or poorly functioning) bladder may have problems with urinary incontinence, or wetting. In addition, these children may have difficulty with catheterizing their bladder due to pain or physical limitations. As these children grow older, the wetting problems will become a socially embarrassing issue as other children may start teasing that can result in poor self-esteem and psychological pain. It is crucial that these children have a readily accessible and convenient way to catheterize, or empty their bladders, allowing them to be dry, or continent.
In 1980 Dr. Paul Mitrofanoff created an easier, more convenient way for children to catheterize their bladders allowing them to be continent (dry). This procedure involves the creation of a channel (or tunnel) going from the bladder out to the abdomen providing an easier way to empty the bladder. Typically, the appendix is used to create this tunnel from the bladder to the abdomen. Often times the tunnel will come out through the belly button, which makes it virtually invisible. When it does not come out through the belly button a small (dime sized), moist piece of tissue may be seen where the tunnel exits the abdomen.
The Malone Antegrade Continence Enema (MACE) uses the Mitrofanoff principle to allow catheter access to the bowel. Through the catheter a large volume tap water enema is infused to allow stool evacuation. This has become the mainstay of bowel therapy in recalcitrant stool incontinence in children with congenital anatomical and neurological fecal incontinence: spina bifida, imperforate anus, and cloacal anomalies.
Surgical Procedure and Post-Operative Care
Before any surgery can be performed on the bladder, studies of the bladder and kidneys will be done to accurately evaluate each child’s bladder. The information revealed in these studies help determine if surgery is the best option for managing your child’s bladder. Once it is determined that surgery is in fact the most beneficial option your child will be scheduled for surgery. The surgical procedure will take approximately 3 hours. Often, however, the Mitrofanoff and MACE operations are done in concert with other major bladder reconstructive surgery. Such surgeries may last 5-10 hours or more.
We encourage children to get up and get moving as soon as possible after surgery. After surgery your child will have a foley catheter in the mitrofanoff to allow it to heal and keep the bladder draining well. In addition, another catheter, called a suprapubic catheter, will help drain the bladder in the more complex reconstructions. The tubes will be left in place for 4-6 weeks to allow the bladder and mitrofanoff to heal. To help the tubes drain properly they may need to be irrigated, or flushed, with normal saline water to keep the urine clear and to prevent the tubes from clogging.
Your child should be able to go home as soon as two to three days after simple Mitrofanoff or MACE surgery if s/he is doing well. Before your child is discharged to home, one of the urology nurses will review a bladder-stretching schedule that needs to be started shortly after the child is discharged. This bladder stretching routine allows the bladder to slowly stretch to hold normal amounts of urine. This routine will involve plugging the catheters during the day, starting with 1-hour time periods and working up to 4-hour time periods. Once your child tolerates having the catheters plugged for 4 hours at time, you will move on to plugging the catheter during the night. When your child tolerates this you will come back to the urology clinic for tube removal.
Sometimes, the urologist has to look inside the bladder before deciding to take the tubes out. This is called cystoscopy and is done under general anesthesia in Day Surgery. It will usually on take a few 30 minutes for the whole procedure. If it is determined that the tubes should come out, parents will be allowed to go into the OR to practice catheterizing the mitrofanoff while your child is asleep. Once your child is awake one of the urology nurses will again teach you how to do clean intermittent catheterizing through the mitrofanoff.
If your child does not need to have the tubes removed in Day Surgery, removal will be done in clinic. Prior to the clinic appointment your child will have x-rays to ensure that it is appropriate to have the tubes removed.
You and your child will quickly become comfortable with caring for the Mitrofanoff. Potential problems may include:
- Bladder spasms
- Tubes that do not drain well
- Difficulty getting a catheter to enter the Mitrofanoff
Ditropan (oxybutynin) is a drug that will help relax the bladder and prevent bladder spasms. Often times your child will be sent home on this medication.
Sometimes a tube will not drain if the bladder has not been irrigated well. If the tube still doesn’t drain after irrigating it is very important that you notify someone in the urology department immediately. If you have difficulty passing a catheter through the Mitrofanoff, it is very important that you notify someone in the urology department. Each year it will be necessary to obtain lab work and a renal ultrasound to evaluate the kidneys and bladder.