What is spina bifida?

Spina bifida is a type of neural tube defect (NTD) where a baby’s spine and spinal cord do not develop properly during the first month of pregnancy.

The spine and brain develop from part of the embryo called the neural tube. When the neural tube does not fully close, it leaves a gap, leading to spina bifida. Spina bifida can cause a range of health problems, depending on its severity.

Around 1 in 1000 pregnancies is affected by a NTD.

What are the different types of spina bifida?

Spina bifida occulta is the most mild and common type of spina bifida. It happens when a small part of the vertebrae (the small, stacked bones of the back that form the spine) does not develop properly, causing a small gap between the bones.

In this type, there is no visible opening in the baby’s back. You may see a tuft of hair, small dimple, or birthmark on the baby’s skin above the area of the back affected. Many people do not know they have this, which is why it is called ‘hidden’ (occulta) spina bifida.

Meningocele occurs when a sac of fluid bulges through the gap between the vertebrae. No part of the spinal cord is contained in the fluid sac, so it usually does not cause any nerve damage. Some people with meningocele have minor disabilities.

Myelomeningocele is the most serious and severe type of spina bifida. A fluid sac which also contains parts of the spinal cord or spinal nerves bulge out through an opening in the spine. The sac may or may not be covered with the meninges (membranes) that cover the spinal cord. This kind of spina bifida can cause moderate to severe disabilities.

What are the symptoms of spina bifida?

The signs and symptoms of spina bifida vary depending on the type and severity of the condition and can impact people’s lives in different ways.

Spina bifida can cause problems including:

• muscle weakness, paralysis or loss of feeling in the feet, hips or legs — these can affect mobility
• bladder and/or bowel incontinence
• hydrocephalus (fluid on the brain)
• learning difficulties
• spine deformities such as scoliosis
• sexual problems
• Chiari malformation (where part of the brain pushes down into the spinal canal)

Spina bifida occulta usually does not have any signs or symptoms.

What are the risk factors for spina bifida?

There is no single cause for spina bifida. Research suggests that genetic and environmental factors, such as your diet, can contribute to the development of spina bifida.

If you are pregnant, you are more likely than others to have a child with spina bifida if:

• you have a diet low in folate diet
• you have already had a baby with spina bifida or another neural tube defect
• you have been taking certain anti-seizure medicines
• you have obesity
• you have insulin-dependent diabetes
• there is a history of spina bifida among your baby’s blood relatives

How is spina bifida diagnosed?

Blood tests and ultrasounds during pregnancy are used to diagnose spina bifida.

During pregnancy, a second trimester screening is recommended between weeks 15 and 18. This is a blood test that measures the levels of certain proteins in your blood. These blood test results, together with some other factors including your age, can be used to predict the chance of your baby having some health problems, including spina bifida. Additionally, a morphology scan is an ultrasound recommended between weeks 18 and 20 of pregnancy. This checks the health of your baby and shows if they are affected by spina bifida.

If tests confirm that your baby has spina bifida, your health team will discuss your results with you and what your options are. Your doctor or midwife can refer you to specialist counselling services and provide you with important information and advice.

You can also call Pregnancy, Birth and Baby on 1800 882 436 to discuss your options for your pregnancy with a maternal child health nurse.

How is spina bifida treated and managed?

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 baby. Doctors and allied healthcare professionals work together to treat your baby’s symptoms and help maximise their quality of life.

Types of treatment include:

Surgery

If severe spina bifida is diagnosed early enough in pregnancy, your baby can have surgery while they are still in your uterus. This can help reduce damage to the spinal cord. If your health team recommends to wait until after your baby is born to perform surgery, the surgery is usually scheduled within the first 48 to 72 hours after birth. This may help reduce the risk of infection and further spinal cord damage.

If your baby has hydrocephalus (extra fluid around the brain), they may also need surgery to insert a narrow tube known as a ‘shunt’ to relieve fluid pressure on the brain.

Symptom and disability management

Mobility support

People living with spina bifida need individualised support based on how their bodies are affected. Common types of aids include limb splints or braces, crutches or a wheelchair to help with walking or movement.

Physiotherapists and other movement specialists may provide ongoing support to help maximise movement and strength.

Urinary continence support

Treatment will aim to help with continence problems and help prevent urinary tract infections and kidney damage.

Learning

Learning support involves managing learning difficulties and help handling new tasks and problem solving.

Some or all of these health professionals may be involved in the management of spina bifida:

• specialist doctors — neurologists, paediatricians, orthopaedic surgeons or urologist
• nurse — continence nurse
• allied health care professionals — occupational therapists, physiotherapists, social workers

Can spina bifida be prevented?

The best way to reduce the chance of your baby developing spina bifida is to have enough folate (a type of vitamin) in your diet. It’s important to take a folic acid supplement for at least one month before becoming pregnant and for the first 3 months of pregnancy.

Foods high in folate include green leafy vegetables, nuts and legumes (chickpeas, dried beans and peas). Eating foods with folic acid added (fortified foods), such as some breakfast cereals, breads and juices can also help get added folate in your diet.

If you take anti-seizure medicines or other regular medicines, check with your doctor before you start taking folic acid supplements in preparation for pregnancy.

Resources and support

• Visit Pregnancy, Birth and Baby's page on spina bifida for more information. Call Pregnancy, Birth and Baby to speak to a maternal child health nurse on 1800 882 436 or video call. Available from 7 am to midnight (AET), 7 days a week (including public holidays).
• Sydney Children’s Hospital Network provides support and information if you are expecting or have a baby with spina bifida.
• ConnectABILITY Australia can provide community support, treatment and further information about spina bifida.

Other languages

Health Translations Victoria offers fact sheets about spina bifida which are also translated into Arabic:

• Hydrocephalus and spina bifida
• Spina Bifida — bladder management
• Spina bifida — an introduction to bowel management