Spina bifida (meaning ‘split spine’) happens when lower parts of the spinal cord don’t form properly when a baby is developing in the womb. This leaves part of the spinal cord exposed and easily damaged. In severe cases of spina bifida, the skin, muscle and vertebral bones protecting the spinal cord nerves might all be missing.
Spina bifida can range from being mild to causing serious disabilities. Symptoms depend on where on the spine the opening is located and how big it is.
There are a number of different types of spina bifida:
- Myelomeningocoele (MMC) is the most common type of spina bifida. With this condition, a sac filled with fluid and the spinal cord come through the baby’s back. This can occur at any level of the spinal cord but is most often at the lower end. The baby usually needs surgery to close the spinal cord and skin to stop any further damage and to stop any infections getting in. This will usually happen within the first 1-2 days after the baby is born.
- Meningocoeles is less common than myelomeningocoeles. When a baby has a meningocoele, the sac on their back is usually covered with skin and will often only contain fluid. Sometimes some of the spinal cord might be found in the sac.
- Lipomyelomeningocoeles usually presents as a skin covered lump on the back. This lump will contain fat cells which often grow into the spinal cord. Sometimes this fatty lump gets tangled with the spinal cord.
- Split cord malformations are like they sound — the spinal cord is split into two. Often there is a piece of bone or cartilage that separates the two. This type of spina bifida may not be noticed at birth as there usually is not a lump on the baby’s back. Sometimes there is a sign such as a patch of hair or a birthmark that signals the problem in the spinal cord.
- Sacral agenesis/caudal regression syndrome is a rare type of spina bifida. In this condition the very lower part of the bony spine (sacrum and sometimes the lumbar spine) and the spinal cord have not developed at all. Learn more about sacral agenesis.
Symptoms
The signs and symptoms of spina bifida vary depending on the type and severity of the condition your child has. For example, people with spina bifida occulta usually do not have any signs or symptoms.
Common issues caused by spina bifida include:
- Muscle weakness: Many babies with spina bifida will have weak or paralysed muscles in their legs. As the child grows, some may walk by themselves, some may need walking aids or wheelchair.
- Bladder and bowel control: The nerves from the spinal cord that supply the bladder and bowel for both muscle control and sensation are located at the end of the spinal cord. Children with spina bifida can affect their continence (weeing and pooing).
- Hydrocephalus and shunts: Children with MMC are likely to also have hydrocephalus (build-up of fluid in and around brain). This is cerebrospinal fluid (CSF) which helps to protect our brain and spinal cord by acting as a cushion around the brain. If the fluid keeps increasing in the brain, a hollow tube called a ventriculoperitoneal (VP) shunt may be inserted to help drain the extra fluid out of the brain.
- Loss of sensation: Spina bifida can cause a child to have poor or no sensation in some areas of the body, depending on the level of the spina bifida. As your baby grows, a doctor or physio will help you work out which areas they can feel and how to take extra care to prevent pressure sores.
- Learning and memory problems: The intellectual ability of children with spina bifida is usually within the normal range, but lower than that of same-aged peers. Many children with spina bifida do well in school. However, some experience difficulties with thinking and learning, especially children who are born with the most severe form of spina bifida.
- Chiari malformation: Most people with MMC will also have a Chiari (or Arnold-Chiari) malformation where (where part of the brain pushes down into the spinal canal. This may cause problems with swallowing and eating and breathing when sleeping (sleep apnoea).
- Tethered spinal cord: A normal spinal cord hangs and moves freely up and down with growth, bending and stretching within the spinal canal. A tethered spinal cord is attached to the inside of the spinal canal and cannot move as freely. This can sometimes cause problems as a child grows and the spinal cord is stretched too much, causing loss of function, like the ability to walk or control the bladder, and in some cases, pain. Sometimes surgery may be needed to ‘release’ the tethered cord. Learn more about spinal cord detethering.
Diagnosis
Spina bifida is usually diagnosed during pregnancy with blood tests and ultrasounds.
Spina bifida level of lesion
The spina bifida level may refer to the level where the damage to the bony spine has occurred. This is often determined by an Xray or MRI scan. The spina bifida level may also refer to the motor and/or sensory level where the damage to the spinal cord has occurred. This is determined by assessments of muscle strength and sensation. This level allows a better understanding of how spina bifida affects the individual as it can sometimes be higher or lower than where the damage to the bony spine occurred.
Treatment
There is no cure for spina bifida, but the health problems it causes can be managed. Treatment depends on how severe it is and how it affects your child. Surgery may be required before birth or shortly after birth to repair the spinal cord.
Children with spina bifida generally require ongoing care from a range of health professionals who specialise in medicine, neurology, neurosurgery, rehabilitation, physiotherapy, occupational therapy, orthopaedics, urology and nutrition.
Pain management
Pain is very common in people with spina bifida. The pain can come from the muscles, bones, joints and/or spinal cord. Sometimes the kidneys, bladder or bowel may also be the cause. Your child’s doctor or physiotherapist will help you work out what is most likely causing your back pain and help you to manage the pain. Learn more about spina bifida and associated pain.
Developed by the Queensland Paediatric Rehabilitation Service, Queensland Children's Hospital. We acknowledge the input of consumers and carers. Resource ID: FS320. Reviewed: Jan 2024
Disclaimer: This information has been produced by healthcare professionals as a guideline only and is intended to support, not replace, discussion with your child’s doctor or healthcare professionals. Information is updated regularly, so please check you are referring to the most recent version. Seek medical advice, as appropriate, for concerns regarding your child’s health.
Last updated: March 2024