Spina bifida (Myelodysplasia)
Disease Information
Treatment & Care
How is spina bifida treated?
In most cases, children born with spina bifida occulta do not need treatment. In cases of meningocele and myelomeningocele, treatment depends on the type of spina bifida and its severity.
Meningocele
- Babies with meningocele usually have an operation during infancy in which doctors put the meninges back and close the hole in the vertebrae.
- Many will have no other health problems later unless there is nerve tissue involved with the sac.
Myelomeningocele
- Babies with myelomeningocele need more immediate attention and often have surgery within the first 1 to 2 days after birth.
- During this first surgery, doctors push the spinal cord and nerves into the vertebrae and close the hole to prevent infection and protect the spine.
Hydrocephalus:
- A baby who also has hydrocephalus (an abnormal build-up of fluid in the brain) will need an operation to relieve the pressure on the brain. This can be done using combined endoscopic third ventriculostomy/choroid plexus cauterization (ETV/CPC), a treatment developed by Benjamin C. Warf, MD, director of the Neonatal and Congenital Anomaly Neurosurgery Programat Boston Children’s Hospital. This technique is effective for infants, in whom ETV alone is not as successful as in older children. CPC reduces the rate of fluid production, while ETV restores the normal fluid circulation.
- Other babies with hydrocephalus may require shunt placement, a process in which a small tube is implanted while the child is under anesthesia. This provides continual internal drainage of fluid from the spaces within the brain (ventricles).
Prevention
Can spina bifida be prevented?
By the time spina bifida is detected in the fetus, it’s too late to prevent the condition. So a great deal of emphasis is now placed on prevention measures beforeand during pregnancy. The baby’s brain and spinal cord development may be affected during early pregnancy by several factors affecting the mother, the most critical of which is a lack of folic acid.
Folic acid is a nutrient found in some green, leafy vegetables, nuts, beans, citrus fruits and fortified cereals that can help reduce the risk of neural tube defects. If you’re of childbearing age, your doctor will encourage you to take appropriate amounts of folic acid.
Long-term outlook
What is the long-term outlook for a child with spina bifida?
At birth, many will have a level of neurological impairment with lower extremity weakness and possible urinary incontinence. There may also be congenital orthopedic deformities such as hip dislocation, spinal deformities and clubfoot.
Orthopedic (bone) problems can develop over time due to the imbalance of muscle strength. These include scoliosis, kyphosis, hip dislocation, joint deformities, and weaker than normal bones
Hydrocephalus can cause headaches, nausea and vomiting while Chiari II malformation may result in difficulty swallowing and periods of time where breathing temporality stops (apneic episodes). Young children may experience precocious puberty.
With excellent treatment and care, your child can have a chance to become an active, productive person with a normal or near-normal life span. A great deal of your child’s potential for functioning depends on her neurological status. Our team will do everything possible to help her develop age-appropriate skills.
How is spina bifida treated?
In most cases, children born with spina bifida occulta do not need treatment. In cases of meningocele and myelomeningocele, treatment depends on the type of spina bifida and its severity.
Meningocele
- Babies with meningocele usually have an operation during infancy in which doctors put the meninges back and close the hole in the vertebrae.
- Many will have no other health problems later unless there is nerve tissue involved with the sac.
Myelomeningocele
- Babies with myelomeningocele need more immediate attention and often have surgery within the first 1 to 2 days after birth.
- During this first surgery, doctors push the spinal cord and nerves into the vertebrae and close the hole to prevent infection and protect the spine.
Hydrocephalus:
- A baby who also has hydrocephalus (an abnormal build-up of fluid in the brain) will need an operation to relieve the pressure on the brain. This can be done using combined endoscopic third ventriculostomy/choroid plexus cauterization (ETV/CPC), a treatment developed by Benjamin C. Warf, MD, director of the Neonatal and Congenital Anomaly Neurosurgery Programat Boston Children’s Hospital. This technique is effective for infants, in whom ETV alone is not as successful as in older children. CPC reduces the rate of fluid production, while ETV restores the normal fluid circulation.
- Other babies with hydrocephalus may require shunt placement, a process in which a small tube is implanted while the child is under anesthesia. This provides continual internal drainage of fluid from the spaces within the brain (ventricles).
Prevention
Can spina bifida be prevented?
By the time spina bifida is detected in the fetus, it’s too late to prevent the condition. So a great deal of emphasis is now placed on prevention measures beforeand during pregnancy. The baby’s brain and spinal cord development may be affected during early pregnancy by several factors affecting the mother, the most critical of which is a lack of folic acid.
Folic acid is a nutrient found in some green, leafy vegetables, nuts, beans, citrus fruits and fortified cereals that can help reduce the risk of neural tube defects. If you’re of childbearing age, your doctor will encourage you to take appropriate amounts of folic acid.
Long-term outlook
What is the long-term outlook for a child with spina bifida?
At birth, many will have a level of neurological impairment with lower extremity weakness and possible urinary incontinence. There may also be congenital orthopedic deformities such as hip dislocation, spinal deformities and clubfoot.
Orthopedic (bone) problems can develop over time due to the imbalance of muscle strength. These include scoliosis, kyphosis, hip dislocation, joint deformities, and weaker than normal bones
Hydrocephalus can cause headaches, nausea and vomiting while Chiari II malformation may result in difficulty swallowing and periods of time where breathing temporality stops (apneic episodes). Young children may experience precocious puberty.
With excellent treatment and care, your child can have a chance to become an active, productive person with a normal or near-normal life span. A great deal of your child’s potential for functioning depends on her neurological status. Our team will do everything possible to help her develop age-appropriate skills.


