Spina bifida

What is spina bifida?

Spina bifida is a type of neural tube defect (NTD) where your baby's spine and spinal cord don't develop properly during the first month of pregnancy.

Your spine and brain develop from a part of the embryo called the neural tube. When the neural tube doesn't fully close, it leaves a gap, leading to spina bifida. This can lead to various health problems.

Spina bifida affects the parts of the body receiving their nerve supply from or below the gap in the spine. It doesn't affect your brain, heart, chest or arms. Each person is affected differently.

What are the different types of spina bifida?

There are different types of spina bifida, based on how severe it is and where it is located in the spine.

• Spina bifida occulta — the mildest and most common type of spina bifida. It happens when a small part of the vertebrae (the small, stacked bones of the back that form your spine) doesn't develop properly. This causes a small gap between the bones. There is no visible opening in your baby's back. You may see a tuft of hair, small dimple or birthmark on your baby's skin above the area affected. Many people do not know they have this, which is why it is called 'hidden' (occulta) spina bifida.
• Meningocele — a sac of fluid bulges through the gap between the vertebrae. No part of the spinal cord is contained in the fluid sac. It usually doesn't cause any nerve damage. Some people with meningocele have minor disabilities.
• Myelomeningocele — the most serious and severe type of spina bifida. The sac of fluid that bulges out through an opening in your spine contains parts of the spinal cord or spinal nerves. 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?

If your child has spina bifida, their symptoms depend on how severe it is. Symptoms may include:

• muscle weakness, paralysis or loss of feeling — affecting movement in the hips, legs and feet
• spine deformities, such as scoliosis
• bladder and bowel incontinence
• hydrocephalus
• learning difficulties
• problems with sexual function
• type 2 Chiari malformation

Spina bifida occulta does not usually have any symptoms.

CHECK YOUR SYMPTOMS — Use the Symptom Checker and find out if you need to seek medical help.

What causes spina bifida?

The exact cause of spina bifida isn't fully understood. Doctors and scientists believe it's influenced by genetic, environmental and nutritional factors.

Your baby may be at higher risk of spina bifida if:

• you do not get enough folate in your diet or with supplements
• you or someone in your family has a history of neural tube defects
• you have insulin-dependent diabetes and your blood sugar levels are not well controlled
• you are living with obesity
• you take certain medicines to treat epilepsy or mental health problems

When should I see my doctor?

If you're planning to become pregnant, discuss with your doctor which supplements may reduce your baby's risk of neural tube defects.

If your child is living with spina bifida, visit their doctor if you suspect your child has:

• a urinary tract infection (UTI) — they may have fever, they may be irritable and their urine may look or smell different to usual
• bowel problems — their tummy is more bloated than usual, they are leaking poo or having trouble managing their bowel routine
• problems with their surgically inserted shunt — they have a sudden change in the size of their head, are sleepy or have swelling near their shunt

Read more about how to tell if your child is sick.

FIND A HEALTH SERVICE — The Service Finder can help you find a doctor or maternal, child and family health service and other health services.

How is spina bifida diagnosed?

Your doctor may diagnose your baby with spina bifida on a routine pregnancy ultrasound scan.

If your baby is diagnosed with spina bifida during pregnancy, you will be referred to a specialist obstetrician, also known as a maternal foetal medicine specialist. They may recommend tests to check your baby's spine and brain development. They will also discuss your child's diagnosis and what it means for you and your baby.

You may choose to get advice on whether to consider terminating your pregnancy. Remember, there is no right or wrong answer. Your decision is very personal and individual.

If your baby has spina bifida, it is a good idea to find out as much as you can about what it will mean for you and your unborn child. Here are some tips to help:

• Ask your doctor for a referral to a genetic counsellor, who can help you understand more about spina bifida and plan for the future.
• Learn about prenatal screening (genetic screening in pregnancy) and antenatal care during your pregnancy.
• Read about shared decision making and understanding informed consent and your rights when having a baby.

How is spina bifida treated?

Treatment may include surgeries and therapies to manage your child's symptoms and disability. Their exact treatment depends on how severe their condition is.

Babies born with spina bifida usually need to stay in the NICU (neonatal intensive care unit) for a few weeks. During this time their medical team will assess and treat their health issues.

Surgery

Your child may need surgery on their spinal cord, either in the womb or 1 to 2 days after they are born. This is to try and prevent an infection or more damage to their spinal cord.

If your baby has hydrocephalus, they may need a hollow tube called a ventriculoperitoneal (VP) shunt put in under their skin in their head. This VP shunt drains extra fluid from their brain.

Sometimes your child may also need hip, leg or foot surgery when they are older.

Symptom and disability management

Your child will usually need ongoing care to manage their symptoms. This will involve a team of doctors and allied health professionals, including:

• neurosurgeons, orthopaedic surgeons and urologists
• paediatricians
• physiotherapists
• occupational therapists
• dietitians
• social workers

Living with spina bifida

Depending on your child's condition they may need ongoing care from a range of healthcare professionals throughout their life. This may be in a hospital or within your community.

Support may include:

• mobility aids
• protecting your child's skin
• bladder and bowel management
• learning support
• trying to keep active

Mobility aids

Your child may need aids such as walking sticks, crutches, walkers and wheelchairs.

You and your child may also benefit from using equipment for self-care such as:

• bath boards and bath benches
• shower chairs
• sliding boards to help your child move from one surface to another

Your child's physiotherapist and occupational therapist can help guide you on which aids they need.

Protecting your child's skin

Your child may be at a higher risk of injuring their skin, including developing pressure sores. This is because their mobility may be limited. They may not feel potential dangers such as hot objects or sharp edges.

Your child can develop serious complications. Their sores may also take longer to heal.

Here are some tips to protect your child's skin:

• Check your child's skin daily.
• Move and shift your child's weight regularly to take pressure off their body.
• Make sure your child's bath water is not too hot.
• Do not place food and drinks directly on your child's lap.
• Dry between your child's toes after each bath or shower.
• Always check your child's skin when using new splints or shoes.
• Always put on sunscreen, a hat and protective clothing if going outdoors.

Bladder and bowel management

Most children with spina bifida have bladder and bowel problems, including incontinence, due to damage to their spinal cord.

To manage your child's bowels, they may need support. Some interventions you can use with your child include:

• exercises
• medicines
• correct positioning at the toilet
• going to the toilet at the same time everyday
• adjusting your child's fluids and diet to support their bowels

Your child may have trouble controlling and fully emptying their bladder. As a result, your child may develop urinary tract infections (UTIs). This can damage their kidneys. To protect your child's kidneys, they may have a catheter inserted to keep their bladder empty.

It is important you encourage your child to drink plenty of water to support bladder health.

Learning and developmental support

Many children living with spina bifida do well in school. However, some may have difficulties learning.

Choosing the right learning environment for your child may seem overwhelming. Allow plenty of time to find the best environment for your child. Speak with your child's healthcare team in advance for guidance.

Keeping active

It is important for your child to be active for their physical, social and emotional wellbeing. Even if your child has limited mobility, they can still be active. Your child's physiotherapist can guide you on choosing an appropriate activity for your child.

Here are some examples of activities:

• swimming or hydrotherapy
• hand cycling
• modified rock climbing, surfing or sailing
• wheelchair yoga or dancing
• playing a sport — wheelchair basketball, tennis, wheelchair racing

Emotional support

Caring for a child living with spina bifida has its challenges. At times you may feel alone, anxious and burnt out. Looking after yourself is a priority. Accept support from your friends and family. This will help you create a network to lean on during hard times.

You can also seek support from social workers, psychologists and your child's healthcare team. A support group in the community can introduce you to people going through similar experiences to you.

The Australian Government's Carer Gateway provides advice and support groups. Your child may qualify for support from the National Disability Insurance Scheme.

For advice and to get connected to local mental health services, call Medicare Mental Health on 1800 595 212. Check the operating times.

What are the complications of spina bifida?

Spina bifida can lead to various complications, which may affect your child in different ways. Complications may include:

• complications of surgery — such as infections, loss of blood or damage to their spinal cord
• complications of a VP shunt — such as blockage or infection
• pressure sores
• kidney damage
• Tethered cord syndrome can also occur, where your child's spinal cord may be unable to move as it should. As your child grows, this may lead to problems like losing the ability to walk or control the bladder.

Pain is a common issue in people living with spina bifida. Your child may have pain in their muscles, bones, joints, spinal cord, kidneys, bladder or bowels. Your child's doctor can help manage it.

Can spina bifida be prevented?

You can reduce your baby's risk of having spina bifida by taking a folate (or folic acid) supplement and eating folate-rich foods if you are planning a pregnancy.

You are recommended to take at least 0.4mg of folic acid for at least one month before becoming pregnant and for the first 12 weeks of your pregnancy. If you know you are at higher risk of having a baby with a neural tube defect, you are recommended to take a 5mg folic acid supplement.

Foods that are high in folate include:

• green leafy vegetables
• legumes
• foods that have folic acid added to them, such as breakfast cereals and breads

Resources and support

• The Sydney Children's Hospital Network provides support and information if you are expecting or raising a baby with spina bifida.
• ConnectABILITY Australia provides community support, treatment and information about spina bifida.
• Gidget Foundation Australia offers support if you are pregnant and feel worried or anxious about your baby and possible diagnoses.

Do you prefer to read in languages other than English?

• Sydney Children's Health Network has factsheets about spina bifida translated into Arabic.

Looking for information for Aboriginal and/or Torres Strait Islander people?

• Rock Solid offers support for Elders, parents and carers of Aboriginal and/or Torres Strait Islander families in Victoria.
• WellMob offers social, emotional and cultural wellbeing resources for Aboriginal and/or Torres Strait Islander people.