Spina bifida factsheet
Introduction
Spina bifida is a condition that affects the growth of a baby’s spine and spinal cord during the first month of pregnancy. It usually affects the lower part of the spine, but it can happen anywhere along it.
Spina bifida happens when the neural tube doesn’t close properly. The neural tube is a part of your baby that closes during the first month, or 15-28 days, of pregnancy. It later becomes the brain and spinal cord.
If the neural tube does not close properly, it can cause damage or differences to the:
- spinal cord
- vertebrae - bones of the spine
- skin that grows over the top of the spine.
A gap in the spine means that messages cannot pass between the body and the brain, affecting your child’s health, development and learning.
Spina bifida is a life-long condition requiring ongoing medical intervention and support.
Signs and symptoms
Signs and symptoms of spina bifida vary depending on the type and how severe it is.
Three types of spina bifida include:
- spina bifida occulta – the most common type, where there is a small gap in the vertebrae. No visible opening, but there may be a tuft of hair, dimple or birthmark on the back.
- meningocele - where a fluid-filled sac pushes through a gap in the spine, usually without nerve damage
- myelomeningocele - the most severe type, where a fluid sac that holds spinal cord or nerves bulges through an opening in the spine, often causing serious disabilities.
Spina bifida can cause issues with your child’s health, development and learning, including:
- muscle weakness in the feet, hips or legs
- loss of feeling in parts of the skin
- bladder or bowel incontinence
- learning difficulties in
- organising
- planning
- initiating
- problem solving
- dealing with new tasks
- sexual difficulties in adulthood.
It is also linked to other conditions like:
- hydrocephalus - fluid on the brain
- Chiari 2 Malformation - a condition where parts of the brain push down into the spinal canal
- conditions that affect the structure of the spine, like scoliosis.
Diagnosis
Spina bifida is found during pregnancy scans and blood tests done around 12 and 20 weeks. After diagnosis, families are referred to a local spina bifida service for information, support and counselling.
Treatment
There is no cure for spina bifida.
Treatment depends on how severe the condition is.
Surgery
Some children with spina bifida may have nerves, tissue and the spinal canal open, which can lead to damage or infection. Surgery places the spinal cord back inside the spinal canal and closes the skin over it.
- if the area is open with no skin covering it, surgery is done in the first few days after birth
- if the area is closed and covered by skin, surgery may be done later.
Some children may also have tethered cord syndrome, where the spinal cord is stuck and can’t move freely. Surgery may help prevent further damage.
Recovery from surgery usually takes around 3 to 4 weeks in hospital.
Your child’s treatment team will talk with you about surgery and what options are available.
Initial management of a newborn
Babies born with spina bifida usually stay in the neonatal intensive care unit (NICU) for a few weeks so the medical team can check for other health issues and if surgery is needed.
Surgery to close an open area on the baby’s back is done in the first 48–72 hours after birth to help prevent infection and further damage.
If the baby also has hydrocephalus, a tube called a shunt is inserted to help drain the fluid to another part of the body.
During the hospital stay, baseline tests will be done to check kidney and bladder function, along with a physiotherapy assessment to check movement and strength.
Ongoing follow up
Children with spina bifida will need ongoing follow-up treatment with their treatment team to:
- manage symptoms
- check for tethered cord syndrome with regular bladder and kidney ultrasounds
- support their daily activities, health and development
- check for any other related health conditions, like sleep apnoea.
Follow up appointments are usually:
- six weeks after discharge from hospital
- every three months for the first two years
- then regularly as needed throughout childhood.
Along with your local doctor, your child may see different clinicians through their spina bifida service, including:
- medical and surgical specialist doctors
- nurses
- physiotherapists – allied health clinicians who help with movement and building strength
- occupational therapists – allied health clinicians who support your child to do everyday activities like dressing, eating and using equipment to stay independent
- social workers - help your family access services, cope with challenges and access emotional, social or financial support
- orthotists - design and fit equipment to help with movement, walking and posture.
Management
Genetic factors
Around 95% of spina bifida cases develop without a family history, but if a close relative has spina bifida, the risk is higher. Families with a history of spina bifida can speak to their local doctor about genetic testing and counselling when planning a pregnancy.
Environmental factors
Not getting enough folate or folic acid before and during pregnancy can increase the risk of spina bifida.
Folic acid is a B vitamin found in:
- leafy green vegetables
- citrus fruits
- liver
- legumes
- fortified foods like bread and cereals.
It is important to take a folic acid supplement at least one month before a pregnancy, and the first three months of pregnancy, to lower the risk of spina bifida.
