Key takeaways

  • Spina bifida is a major fetal structural condition that involves significant neuromuscular and skeletal changes, and nearly half of the children who have it also have scoliosis.
  • Severe scoliosis has a significant impact on the health of a child with spina bifida, potentially causing increased limitations on mobility and affecting lung and heart function.
  • Having both conditions requires complex management by a multidisciplinary team, additional treatment, long term monitoring, and sometimes surgical intervention.
  • The outlook for children with both conditions improves significantly with early intervention and comprehensive care, though challenges typically continue into adulthood.

Spina bifida is a type of neural tube defect caused when the bones of the spine don’t fuse completely, leaving the spinal cord outside the bones. It happens very early in pregnancy – around the 3rd or 4th week of fetal development, and depending on how serious it is, it may affect the growth and function of the lower limbs and internal organs.

Scoliosis is an irregular curvature of the spine that frequently occurs in children who have spina bifida. It can be. mild or severe, depending on the type and extent of the curve. Scoliosis that occurs along with spina bifida is known as neuromuscular scoliosis, and it can be severe. Neuromuscular scoliosis typically affects the nerves and muscles, affecting things like breathing and balance while sitting.

Read on the learn more about spina bifida with severe scoliosis, how both conditions are treated, and what the outlook may be for children who have both.

Research suggests that between 44% to 53% of individuals with spina bifida will develop scoliosis at some point. The more severe their spina bifida, the more likely a child with spina bifida is to develop scoliosis. Some children with spina bifida are born with scoliosis.

In about half the children who have both spina bifida and scoliosis, it is severe enough that they need interventions like surgery.

Risk factors for having both conditions include:

  • spina bifida lesion that is higher up on the spine
  • motor deficits that are worse on one side than the other
  • difficulty walking or inability to walk

Diagnosing scoliosis often begins with observation and physical examination, especially in children at high risk due to spina bifida lesion level or reduced mobility.

X-rays are essential for defining the degree of a scoliosis curve, called the Cobb angle. They are also used to assess the progression of scoliosis and monitor it.

Regular X-rays and exams are recommended to monitor scoliosis progression, especially in children who cannot walk and those with weakness on one side of their body more pronounced than the other.

Infants and toddlers may need additional imaging, such as an MRI, to assess their spines and vertebrae for other conditions, to help in treatment planning, and to prepare for spinal surgery to correct scoliosis.

Treatment for children with spina bifida and severe scoliosis can be individualized since there are so many potential factors related to both spina bifida and scoliosis. It requires a team of healthcare professionals, including:

Treatment options for severe scoliosis include:

Scoliosis bracing: This treatment involves wearing a rigid brace on the torso to help straighten the spine as it grows. This may not be as effective for severe scoliosis with spina bifida since children with spina bifida often have neuromuscular weakness, and scoliosis causes an imbalance of the trunk.

Scoliosis surgery: This treatment typically involves spinal fusion surgery to help straighten the spine and align it more closely with the midline of the body. It is often considered for children with rapidly progressing worsening scoliosis and when scoliosis is causing or worsening other conditions, such as:

  • breathing difficulty
  • difficulty balancing when sitting
  • pain

For children with spina bifida and severe scoliosis, there are special considerations when planning and performing scoliosis surgery, including:

  • VP shunt: These child may have had excess fluid in their brains that required surgical placement of a VP shunt – a tube to help the fluid drain so that the brain is not injured.
  • Reduced bone strength and quality: Children with spina bifida may also have weaker bones.
  • Slower wound healing: Children with spina bifida and scoliosis are more likely to have reduced mobility, which can lead to weakened immune systems and slower wound healing, making them vulnerable to infections.

With improved medical care and treatment options, 75% of children with spina bifida now survive into adulthood. However, for children who also have severe scoliosis, quality of life may be significantly affected. Having severe scoliosis can impact other functions, such as breathing, eating, and walking.

For children with both spina bifida and severe scoliosis, scoliosis surgery may reduce the severity of their spinal curve, but it may not ultimately improve their health-related quality of life. Doctors will take all this into consideration when planning treatment and care.

Having a healthcare team is important, as they may also develop other health conditions related to scoliosis, such as a tethered spinal cord or problems with shunting for hydrocephalus (excess fluid in and around the brain), which may affect the quality and length of life. However, many individuals with spina bifida and scoliosis are able to care for themselves and, with minimal assistance, live independent lives or as adults.

No, but almost half of all children with spina bifida will develop scoliosis. Children with more severe spina bifida and those who cannot walk are at a greater risk of developing it.

It’s difficult to prevent scoliosis in children with spina bifida due to the changes in muscles and bones they experience; however, early diagnosis may help make treatment more effective.

Not always, but it can help stabilize the spine and stop the progression of scoliosis curving. This may not always help a child feel better.

At least 75% of kids with spina bifida and severe scoliosis survive into adulthood. However, they will still need treatment and ongoing healthcare.

Spina bifida and severe scoliosis are lifelong conditions. Most children who have both conditions will require ongoing care to address their individual needs. Most live into adulthood. With some assistance and a healthcare team, children with spina bifida and severe scoliosis can experience full lives.