Tethered spinal cord in children

What is a tethered spinal cord in children?

Usually, as your child develops, the spinal cord ends at a point in the lower back where it is not attached to any skin or other structure. This gives the cord freedom to grow along with your child.

If your child has a tethered cord, also known as tethered cord syndrome (TCS), some disease, trauma or disorder has caused the cord to attach to the spinal column.

As your child grows, the spinal cord can stretch, causing damage to the cord and the nerves around it. Your child might have weakness in the arms and legs, back pain and problems controlling their bladder because of the tethered cord.

This condition is closely associated with spina bifida, a birth defect in which the spinal cord does not close properly during fetal development.

What are the signs and symptoms of a tethered spinal cord in children?

• Back pain, which worsens with activity and improves with rest

• Bowel and bladder problems, such as incontinence

• Changes in leg strength

• Difficulty walking

• Fatty tumor or deep dimple on the lower back

• Hairy patch on the lower back

• Leg deformities

• Leg pain (especially in the back of the legs)

• Lesion (a sore or infection) on the lower back

• Numbness or tingling in the legs

• Scoliosis (curvature of the spine)

• Skin discoloration on the lower back

• Spine tenderness

What are the causes of a tethered spinal cord in children?

The following situations and conditions can cause a tethered spinal cord:

• Dermal sinus tract – scaly channel of tissue along the spinal cord that is prone to infection and other complications

• Diastematomyelia – split spinal cord

• Lipoma – benign (non-cancerous), fatty growth

• Lipomyelomeningocele – birth defect that causes a fatty mass under the skin of a child’s back, which may pull on the spinal cord

• Myelomeningocele (spina bifida)

• Spine surgery

• Spine trauma

• Tumor

How is a tethered spinal cord in children treated?

A tethered spinal cord can cause problems from the time your infant is born, or as your child grows, depending on the cause and severity of the disorder. These problems can include paralysis or reduced sensation in the lower part of your child’s body, which affects movement and bladder control.

If your child has a tethered cord, you’ll need to find care from a team of specialists in pediatric care, including pediatric urology. Some infants and children require surgery to repair their tethered cord and to help with bladder control problems. 

Surgery

Children born with a serious problem of tethered cord may need surgery as soon as possible to prevent complications. This is especially true of children who have severe forms of spina bifida such as myelomeningocele. If doctors do not correct how the spinal cord is attached, the child’s growth will stretch and damage the spinal cord, causing further problems with movement, nerves and urination.

Doctors carefully monitor children who have a tethered cord and no symptoms. If your child begins to show symptoms such as pain, muscle weakness, incontinence (leaking of urine) or other bladder trouble, doctors may recommend surgery as soon as possible to prevent further damage from your child’s growth. 

Surgery to untether your child’s spinal cord does not correct damage that already has occurred. If your child already had a neurogenic bladder, or inability to control the bladder and urine flow, an experienced pediatric urologist will recommend treatment for the bladder problem. Nerve damage can keep the bladder from emptying as it should. This can cause frequent urinary tract infections (UTI) and kidney problems. Some children need specialized surgery or medications to help their bladders and urinary tract systems function as they should.

Sometimes, doctors must insert catheters or perform a vesicostomy, which is an opening in your child’s lower abdomen to allow urine to flow. At Children’s Health, our urology team can use a robot to operate in very small spaces of the body, which means a smaller incision, and a way to help children empty their bladders on their own.

Prevention

Research has shown that women who take folic acid supplements or add natural folic acid to their diets can decrease risk of giving birth to a baby with spina bifida. Avoiding spinal injuries or trauma also can prevent tethered cord syndrome.

Children who have a tethered cord but no symptoms should have surgery as soon as symptoms appear, so parents and doctors should closely monitor these children. Doctors also monitor children who have had surgery because a small percentage of children who have surgery to untether a cord require a second surgery when the cord tethers again.

Some problems with the bladder related to a tethered cord cannot be prevented. Parents can watch for symptoms of neurogenic bladder and help their children follow all instructions from doctors to manage problems with controlling urination, including home instructions following surgery.