If your child has spina bifida, tethered cord or other spinal cord conditions, they may require lifelong care depending on the severity of their condition. At University Health’s Spina Bifida/Tethered Cord Clinic, our team will ensure your child is well-cared for and equipped to live a long, fulfilling life.
Experience Multidisciplinary Care
With our multidisciplinary approach, your child’s care team will consist of a wide range of specialists, depending on their needs and follow-up care.
At the Spina Bifida/Tethered Cord Clinic, we have pediatric brain and spine specialists, including Drs. Izabela Tarasiewicz and Joanna Gernsback, pediatric neurosurgeons, who are known for performing a minimally invasive approach to correct tethered cord after your child is born. We also have a team of orthopedists, urologists, therapists and other specialists working together to provide you excellent, comprehensive care.
Your child’s care team will be by your side, offering guidance and support through what can feel like an overwhelming diagnosis. From childhood to adulthood, they will be there every step of the way.
What Is Spina Bifida/Tethered Cord?
Spina bifida affects the bones of the spine while tethered cord affects the spinal cord’s tissues. Sometimes the two are used interchangeably because many people with spina bifida have a tethered spinal cord.
The difference between spina bifida and tethered cord
Spina bifida is an older term doctors would use to describe a gap in the spine. Tethered cord is a more modern term that explains what happens to the spinal cord itself.
A tether cord occurs when the spinal cord becomes stuck or scarred, causing it to be pulled or stretched. Since the opening in the spine from spina bifida can cause the spinal cord to become stuck, the two conditions are often connected.
Types of Spina Bifida/Tethered cord
There are several types of spina bifida/tethered cords, which range from mild to severe.
- Spina bifida occulta is the mildest form of this condition. It is skin-covered, so sometimes difficult to diagnosis at birth. Some babies might have dimples that might trigger a workup. The only sign of spina bifida may be a birthmark or small tuft of hair over the area on their back. Some patients might not know they have tethered cord until they start having urinary symptoms.
- Lipomyelomeningocele is a skin-covered tethered cord where the spinal cord has not closed completely during pregnancy and fat is stuck between skin and spinal cord. With the babies’ growth, the fat pulls on the nerves, creating urinary symptoms and motor and sensory symptoms. These symptoms need to be evaluated by the team of experts and will be followed throughout the child’s life.
- Myelomeningocele is the most severe form of tethered cord/spina bifida. It is also called Open Neural Tube Defect. The spinal cord forms outside the body at the surface of the skin. It needs to be closed quickly after birth to avoid infections and any further neuro injury. This condition is associated with brain abnormalities, known as Chiari II. About 60-80% of cases are associated with hydrocephalus, which is a buildup of fluid in the brain. Some patients will require a ventriculoperitoneal shunt placement after birth is they become symptomatic of the hydrocephalus condition.
Some children with lipomyelomeningocele and myelomeningocele may be lifelong patients depending on the severity of their condition and need for medical attention.
Symptoms and Complications of Spina Bifida/Tethered Cord
Depending on the severity of your baby’s condition, it may cause:
- Abnormal skin tissue on the back, including a tuft of hair, dimple or sac
- Paralysis of the legs
- Clubfoot
- Incontinence (inability to control urination or bowel movements)
- Constipation
- Numbness in the spinal area
- Hydrocephalus (head swelling)
- Bone frailty
- Developmental delays
- Scoliosis
Diagnosis of Less Severe Types of Tethered Cord
Diagnosing less severe types of tethered cord can happen a few ways:
- When babies have dimples, their pediatrician can order a lumbar ultrasound up to three months of age to look at signs of a tethered cord.
- If the baby is older than three months, doctors can use an MRI to diagnose.
- If child is not toilet trained and their symptoms cannot be explained, an MRI can rule out a tethered cord.
- If a baby or a child has a hairy patch on their back or a scar-like patch, an MRI can rule out a tethered cord.
- If you child has scoliosis, it can be a sign of a tethered cord.
Associated Syndromes with Tethered Cords:
- Vacterl Association (VATER) syndrome
- Imperforated anus
- Genital anomalies
At University Health, we care for you like you’re family. Our goal is to provide the highest level of treatment to your child so they can live a healthy, full, independent life.