Q: My 11 year old has Spina Bifida, a low grade, but her left kidney is in bad shape and an augmentation surgery (part of the colon will be removed and placed on her bladder for more urine storage) has been recommended. After hearing the risk (ruptured bladder and or bladder cancer just to name a few) I don’t know what to do. Can anyone help me decide by way of more information about the surgery or now of anyone who has had the surgery?

A: Bladder augmentation is a major surgery that should not be undertaken lightly, however, this surgery has proven to protect the kidneys, preserve renal function and make it possible to stay dry between catheterizations in many children with Spina Bifida over the past several decades. Before resorting to surgical enlargement of the bladder, clean intermittent catheterization and medication should be maximized. If a good catheterization program with medication is not effective in reducing the bladder pressure to a safe level, then bladder augmentation is a wise choice. It is true that there is the risk of leaking, rupture and bladder cancer but there are things to do that decrease those risks.

One very important thing that everyone in the family must understand is that once a bladder has been surgically enlarged (augmented) it is extremely important to be sure to stay on a good catheterization program. One of the things that cause the bladder to leak or rupture is overfilling. Because there can be a longer period of time between catheterizations without getting wet, some children and young adults often will not do their catheterizations as often. When this becomes a habit, the risk for leaking or rupturing increases. The person with an augmented bladder must be very responsible and take good care of their bladder. Tumors (cancer) in the bladder after having an augmentation have been reported. Although this is a rather small risk, the urologist will look into the bladder with a scope every year beginning around 10 years after the surgery to make sure there is no sign of any tumor.

If a person had an augmented bladder and develops a high fever, has abdominal pain or has signs of infection that do not have an obvious source (such or step throat or virus etc.) it is important to rule out leaking from the bladder. Testing can be done to check the bladder and determine if there is a problem.

If the bladder is not behaving and is putting pressure on the kidney and the kidney is deteriorating, the pressure has to be relieved or the kidney function will decrease. The kidney is an organ that does not "heal itself". Once kidney damage occurs it is permanent. When kidney function is lost, it is lost forever. Everyone needs good kidney function to live well. There are several ways to reduce the pressure in the bladder. A subrapubic catheter can be place through the abdominal wall and a leg bag can be worn to drain the urine. This is usually just a temporary measure and is not a good long term solution. The surgeon can make an opening into the bladder a let the urine just spill out onto a diaper. This is called a vesicostomy and is useful in infants and small children, but is not very satisfactory in older children or adults. Bladder augmentation is by far the best solution for a good life in a person who cannot control their bladder pressure with medicines and intermittent catheterization whose kidneys are deteriorating.