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When picturing what happens when a child is affected by tethered spinal cord syndrome, it may help to imagine a balloon attached to a long string. If the string of the balloon becomes stuck or tangled—perhaps on the overhang of a door, or in the frame of a chair—the balloon can no longer turn and flow freely with the breeze: Its range of motion is greatly reduced.
In a normal spinal canal:
When a child has tethered spinal cord syndrome, the spinal cord becomes affixed to the surround tissues for one of the following reasons:
As a result, the cord can’t flex or bend within the spinal canal.
Though the exact process is still not fully understood, neurological problems can develop in response to a tethered spinal cord. Experts believe that these problems are linked to abnormal stress and strain on the nerve roots at the lower end of the spinal cord; as they are taxed, the nerves themselves are damaged.
Research also indicates that the ongoing strain on the nerve roots may thin the nourishing, oxygen-rich blood that reaches the spinal cord nerves and their cells: Because the nerves are not getting the blood and oxygen they need, they are weak and more prone to injury.
As the condition progresses, a child with tethered spinal cord syndrome may eventually experience:
When a child has congenital tethered spinal cord syndrome—meaning he’s born with the condition—it’s due to a complicated biological process, beginning when the embryo is first growing in the mother’s uterus.
Certain congenital syndromes that affect a newborn's organ systems can also cause tethered cord. These syndromes include:
Because the cells that form the spinal cord in utero also affect the development of many other structures in the lower body, a baby born with tethered spinal cord syndrome may have:
When a child develops tethered spinal cord syndrome later in infancy or childhood, warning signs may include:
Q: Will my child be OK?
A: Tethered spinal cord syndrome can affect different children in very different ways, depending on:
The good news is that tethered cord is a very treatable condition, especially when diagnosed and treated early in the child’s life. While surgery might not be able to restore neurological function that has already been lost, children with this disorder can go on to live full and healthy lives with proper care and follow-up.
Q: Does Boston Children’s offer testing for tethered spinal cord syndrome when a baby is still in the womb?
A: When a child’s tethered spinal cord is congenital (present at birth), prenatal ultrasound may be able to detect the disorder. Children’s provides prenatal ultrasonography through our Advanced Fetal Care Center.
Q: Can anything be done to ensure my child’s spine does not “re-tether” after surgery?
A: Unfortunately, while several techniques have been devised in the hopes of preventing or minimizing the risk of a child’s spinal cord becoming tethered again later in life, none have proven to be successful (and without associated complications) in long-term studies. Research continues into this important area.
Q: Will my child definitely need surgery?
A: Surgery is the only treatment that can actually “untether” the spinal cord, but the need for surgery will be based on careful discussion with a neurosurgeon.
Q: Can my child’s lost functions be restored through treatment?
A: Unfortunately, while surgery can untether the spinal cord, it cannot restore functions—including bowel and bladder control and sensation and mobility in the legs and feet—that may have already been impaired or lost. With rehabilitation and support, children with these complications can regain some function and go on to active and healthy adult lives.
Learn more about the Tethered Spinal Cord Program, physical therapy, and other support services at Boston Children’s.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”