Introduction

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.

When the neural tube closes properly, your baby’s brain and spine will develop normally. 

If the neural tube does not close properly, it can cause damage or differences to the brain and spine. This is called a neural tube defect.

Neural tube defects include conditions like:

• spina bifida- when the lower part of the tube does not close, affecting the spine
• encephalocele- when the skull does not form properly, causing the brain to bulge
• anencephaly- when part of the brain does not develop; babies with this condition may only live for a few days.

Children with neural tube defects will need ongoing care. The support they need will depend on how serious the condition is.

Taking folic acid at least one month before pregnancy and for three months after becoming pregnant lowers the risk of neural tube defects. If your pregnancy is unplanned, talk to your doctor or midwife and start taking folic acid as soon as possible.

Neural tube defects affect the brain and spine. Symptoms vary depending on the condition and how severe it is.

They can include:

• trouble with movement or physical disability
• difficulty controlling the bladder and bowel
• vision or hearing issues
• intellectual disability
• differences in physical appearance.

Neural tube defects are usually found in the second trimester, between 14 and 20 weeks of pregnancy. 

They can be diagnosed through: 

• ultrasound scans - to check how the brain and spine are growing
• the maternal serum screening test – to check if there is a higher or lower chance of neural tube defect conditions
• amniocentesis – a test done between 15 and 20 weeks of pregnancy, where a long needle is used to take a sample of the fluid around your baby.

It is your choice whether to have extra scans and tests. Some families choose testing to prepare or make decisions about their baby’s health care. There is no right or wrong decision.

Mild neural tube defects may not be found until after birth. If your baby shows signs, doctors may order an MRI scan or X-ray.

There is no cure for neural tube defect conditions. Children will need ongoing care to manage their condition and support their quality of life.

Your child’s treatment team will let you know what the best treatment options are, based on:

• age
• type of condition
• how severe the condition is
• any other health conditions they have
• what their individual needs are.

Support can include physiotherapy, occupational therapy, or equipment to help with daily tasks. Some children may also need surgery to close openings in the spine or skull.