What is spina bifida?

Spina bifida is a condition that affects the normal development of a baby’s spine during early pregnancy. A baby’s spine and brain begin to develop from the neural tube of the embryo during the first month of pregnancy. Spina bifida occurs when the neural tube has a defect and fails to close completely, leaving a gap in the baby’s spine.

This gap can interfere with messages that pass between the body, the nerves within the spine and the brain.

Spina bifida only affects the part of the body that receives its nerve supply from the open area of the spine or below that area. It doesn’t affect the brain, heart, chest or arms.

What are the different types of spina bifida?

There are different types of spina bifida. The mildest form, spina bifida occulta, occurs when the spinal bones around an otherwise healthy spinal cord don’t connect properly. A person with mild spina bifida might have few or no symptoms.

Another type is called meningocele. This is when there is a defect in the outer parts of the bones of the spine and the spinal cord is normal. Only the meninges (the covering of the spine) are damaged and push out through the opening.

In myelomeningocele, the most serious form, the spinal cord and its protective covering bulge through the gap in the baby's spine.

Myelomeningocele can lead to a number of problems including:

• leg weakness and trouble with movement
• issues with skin sensation
• bladder and bowel control
• learning difficulties

What causes spina bifida?

The cause of spina bifida is not fully understood. It appears to be a combination of genetic, environmental and nutritional factors.

What are the risk factors for spina bifida?

Your baby is more at risk of spina bifida if:

• you or someone in your family has a history of neural tube defects
• you have insulin-dependent diabetes and don't control your blood sugar well
• you are living with obesity
• you take certain medications such as valproate or carbamazepine (used to treat treatment epilepsy, seizures or psychiatric disorders)

It’s important to speak to your doctor about any medicines you take, if you are planning to become pregnant.

How can I prevent my baby from having spina bifida?

One way you can reduce the risk of your baby having spina bifida is to take a folate supplement and eat folate-rich foods if you are planning on becoming pregnant. You should take a folate supplement for at least one month before becoming pregnant and for the first 12 weeks of pregnancy. Most females should take 0.5mg daily of folate. If you have a family history of spina bifida, you should take 5mg of folate daily.

How do I know if my baby might have spina bifida?

Spina bifida can be diagnosed with an ultrasound and blood test around the 16th and 18th weeks of pregnancy. The ultrasound done at this time helps your doctor confirm that your baby is developing and growing normally.

What if my baby has spina bifida?

If your baby has spina bifida, it’s a good idea to find out as much as you can about what it will mean for you and your unborn child.

If the condition is serious enough, you might also wish to get advice and information on whether to have the baby or to consider terminating the pregnancy. It is important to remember that new technologies are being developed to better manage spina bifida, including in utero treatments (medical procedures done to the baby while still inside the uterus). In utero treatments may improve your baby’s health outcome, so if they are recommended for your baby, discuss them with your doctor.

You may want to ask your doctor for a referral to a genetic counsellor, who can help you understand more about the spina bifida and to plan for the future. You can also call Pregnancy, Birth and Baby on 1800 882 436 for advice, support and guidance from our maternal child health nurses.

What happens when my baby is born?

Your baby may need special care at the time of birth. Medical staff will usually wrap any spinal opening with sterile dressings and plastic wrap and attach a drip to a vein in your baby’s arm to provide fluids and antibiotics. Your baby will be placed in an incubator to help keep them warm.

If the spina bifida is severe, your baby may be transferred to the hospital’s neonatal intensive care unit. If necessary, an operation can be done within the first few days to repair the spine, or drain fluid from the baby’s brain.

What care will my child need as they grow?

Depending on the type of spina bifida, your baby might need continuing care in a hospital or within your community.

Treatment may require a team of several specialists to care for your child. This could include:

• a paediatrician
• neurosurgeon and/or orthopaedic surgeon
• urologist
• clinical nurse consultant
• social worker
• physiotherapists, orthotists and occupational therapists

As they get older, your child may need help with practical matters such as movement and learning how to go to the toilet.

What assistance is available?

If you are caring for a child with spina bifida, there are support groups in the different states. You can also get practical advice from a maternal child health nurse at Pregnancy, Birth and Baby by calling 1800 882 436.

The Australian Government’s Carer Gateway provides general advice and different states have support groups. Your child may qualify for support from the National Disability Insurance Scheme.

Where can I get more information about spina bifida?

Your need for support may differ from family to family, especially during the early years. Each hospital can provide you with support through their Spina Bifida Service or social worker.

See the healthdirect article on spina bifida for further information on symptoms and management.