Surgery Helps Kids Who Can't 'Hold It'

Pediatric neurosurgeon Monica Wehby performs a procedure that helps some incontinent children.

Pediatric neurosurgeon Monica Wehby performs a procedure that helps some incontinent children. Jane Greenhalgh, NPR hide caption

itoggle caption Jane Greenhalgh, NPR

Few things terrify children as much as the thought of wetting their pants at school. A national survey of children's fears found this ranked third after the death of a parent and going blind. In Portland, Ore., pediatric neurosurgeon Monica Wehby is helping a group of children for whom this fear is a daily reality.

Some children are born with a condition, known as tethered-cord syndrome, that can affect the nerves that control the bowel and bladder. Wehby performs a procedure that can correct the problem. She's found that more than 90 percent of her patients dramatically improved, and many regained complete control.

Wehby performs many more complicated operations, but she says this procedure is one of her favorites, because it's so simple and yet makes such a huge difference for these children and their families.

Tethered-Cord Syndrome

Dr. Monica Wehby performs a surgery that severs tissues at the base of the spine.

Dr. Monica Wehby, left, severs tissues at the base of the spine, allowing the spine and the nerves inside to stretch more freely as bodies grow. Jane Greenhalgh, NPR hide caption

itoggle caption Jane Greenhalgh, NPR

Some children and adults with bladder and bowel control problems may be suffering from a nervous system condition called "tethered spinal cord syndrome." It's not known how many cases of incontinence are caused by the syndrome, but it is becoming increasingly recognized and operations to correct the condition are being performed more frequently.

The problem arises when the piece of tissue at the end of the spinal cord is inflexible and doesn't stretch as people grow. The tissue, called the "filum terminale," pulls the spinal cord down, affecting the end of the spinal cord and the nerves that exit from there. One of the major functions of this part of the spinal cord is bladder and bowel control.

The condition is actually a very mild form of spina bifida, a condition that occurs when the bones that surround the spinal cord don't grow properly. The spinal cord is attached to the overlying tissue instead of being protected by the bones of the spine. In severe cases of spina bifida, the spinal cord extrudes through the skin and is open to the world, causing extreme disability or death.

According to the National Institute of Neurological Disorders and Stroke (NINDS), incontinence is just one of several symptoms of tethered-cord syndrome. Children and adults may have unusual hairy patches, dimples or fatty tumors on the lower back. Patients may also experience foot and spinal deformities, weakness in the legs, low-back pain, and scoliosis. NINDS says the syndrome may go undiagnosed until adulthood, at a point when the filum terminale can't stretch and nerve damage becomes apparent. The progression of the disease depends on the amount of strain put on the spinal cord over time.

Pediatric neurosurgeons like Monica Wehby are able to bring relief by snipping the filum terminale in half, releasing the traction on the spinal cord and allowing the nerves inside to stretch more freely as the body grows.

It's important to emphasize that this anatomical disorder of the spine and spinal cord is not the only possible cause of bladder and bowel problems in school-age children. Children with these problems need careful evaluation to rule out other possible causes, including anatomical, developmental or behavioral. If tethered-cord syndrome is suspected, patients require a thorough history and physical examination, an MRI, and other tests to determine the status of the spinal structures.. If tethered-cord syndrome is suspected, patients may undergo an MRI or other tests to determine the status of the spinal structures.

It's also important to note that the success of the surgery isn't fully known because there have been relatively few studies of how well the surgery works. One of the most recent was published by Wehby in the journal Pediatric Neurosurgery in 2004. She looked at 60 children who had both bowel and bladder control problems. In nearly all, bladder and bowel function was much improved. But some children did continue to have problems, so the surgery may not be 100 percent successful for all who have it.

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