Spina bifida

Spina bifida is a birth defect that occurs when your baby’s vertebrae (spine) does not completely close around the spinal cord.

Key points

  • Spina bifida is a birth defect that affects the developing neural tube.
  • It occurs in the first 28 days of pregnancy when the neural tube is being formed.
  • The neural tube later develops into the brain, spinal cord and surrounding tissues.
  • About one in 1000 pregnancies are affected, and it is usually diagnosed before your baby is born, during the 18–20 week anatomy scan.
  • There is no cure, but taking a folic acid supplement before and during pregnancy reduces the risk of your baby being born with spina bifida by up to 70 per cent. 
  • Supplementation with 800 micrograms of folic acid daily for women four weeks before and 12 weeks after conception is recommended.
  • Spina bifida occurs in varying forms of severity. There is no cure and it is a life-long condition. Treatment is aimed at managing complications and optimising quality of life.

What causes spina bifida?

The exact cause is unknown. Low folate levels before pregnancy and a family history of spina bifida increase your risk.

How does spina bifida occur?

When a baby is conceived, embryonic cells begin to form the neural tube. By 28 days this neural tube has closed and begins to develop into the baby’s brain, spinal cord and surrounding tissues. In spina bifida, part of the neural tube fails to close properly. In some cases, muscle and skin cannot form around the opening, causing the meninges (the protective covering around the spinal cord) and spinal cord to form a sac outside of the body.

How can I reduce the risk of having a baby with spina bifida?

The Ministry of Health recommends women who are at a low risk of having a baby with a neural tube defect (NTD) take 800 micrograms of folic acid daily for four weeks before and 12 weeks after conception. If you are higher risk, taking 5 mg daily for four weeks before and 12 weeks after conception is recommended. Read more about folic acid/folate in pregnancy.

How do I know if I am higher risk?

You are more at risk if you or your partner have a neural tube defect or there is a family history, for example, if you have a relative with a neural tube defect. You also have an increased risk if you are taking medications that reduce the amount of folate your body absorbs. These include:

  • insulin to manage diabetes
  • anticonvulsant medication, e.g. carbamazepine and sodium valproate
  • infertility treatment
  • medications containing vitamin A.

Types of spina bifida

There are three types of spina bifida, each varying in severity. From mildest to severist these are:

  • spina bifida occulta
  • spina bifida meningocoele
  • spina bifida myelomeningocoele.

Read more about types of spina bifida.

Complications of spina bifida

The type and severity of complications varies and depends on where on the spine the defect is. If the defect is higher up the spine, more nerves will be affected and cause more complications than if the defect is lower down the spine.

Common complications include:

  • leg weakness or paralysis
  • hydrocephalus (fluid on the brain)
  • lack of bladder and bowel control
  • changes in skin sensation
  • clubfoot
  • learning difficulties.

Read more about complications.

How is spina bifida diagnosed?

Spina bifida is usually diagnosed before your baby is born, during the 18–20 week anatomy scan. Maternal blood tests may also show an increase in alpha-fetoprotein (AFP) during pregnancy.

What happens if my child is born with spina bifida?

If spina bifida myelomeningocoele is diagnosed prenatally, an elective caesarean section may be recommended to help minimise further spinal cord or spinal nerve damage. 

Once your baby is born, they will be transferred to a neonatal intensive care unit (NICU) to be closely monitored. The sac that is outside their body will be kept moist, and surgery to close the defect will be done within 24–48 hours. Antibiotics may be given to reduce the chance of meningitis (inflammation of the meninges). A cranial ultrasound, CT, MRI and kidney function tests may be needed.

Your baby will need ongoing medical involvement to ensure they have the best possible quality of life and to help manage ongoing issues. 

What is the treatment for spina bifida?

There is no cure for spina bifida so treatment is focused around managing complications.

  • If hydrocephalus is diagnosed, a ventriculoperitoneal (VP) shunt is inserted to help drain the fluid from around the brain into the abdomen.
  • A physiotherapist will be involved in your child’s care. Use of walking aids such as crutches and a wheelchair can help.
  • Care is needed to make sure your child’s skin stays healthy as they may not be able to feel pressure on their legs and feet or feel when they have hurt or cut themselves.
  • Using a catheter to empty their bladder may be needed to avoid urinary tract infections (UTIs) or kidney problems.
  • Your child may be taught specific toileting techniques such as sitting on the toilet the same time every day to avoid constipation. As bowel continence can be a problem, your child will be taught ways to manage this.

Many healthcare professionals will be involved in your child’s care, so you will not be alone in your journey. They will help you manage any problems your child has in order to minimise the impact on their daily life.

What is the outlook for people with spina bifida?

Like many other chronic conditions, spina bifida creates challenges in daily life. However, people with spina bifida can and do live normal and fulfilling lives. They are not defined by their condition. They attend school and university, make friends, form lasting relationships and contribute to society.

What support if available?

The Spina Bifida Association of New Zealand is a charity that supports parents expecting a baby diagnosed with spina bifida and parents of children, young adults and adults living with spina bifida. Spina Bifida Association of New Zealand

Parent2Parent is a New Zealand organisation that supports families living with a disability. Parent2parent

Learn more

Shine – UK Spina bifida and hydrocephalus charity 
Spina Bifida Foundation Victoria 
Spina Bifida – NHS 
Hydrocephalus – NHS

References

  1. What is spina bifida? Spina Bifida Association of New Zealand, 2013
  2. Management of infants with myelomeningocoele Auckland District Health Board
  3. Folate/folic acid Ministry of Health, New Zealand
  4. Spina bifida The Sydney Children’s Hospitals Network, Australia 
Credits: Health Navigator Editorial Team.