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Neural tube defects

0-15 years

Neural tube defects (NTDs) are brain and spinal cord abnormalities. They include spina bifida, encephalocele and anencephaly. These conditions are caused by a problem in the early development of the unborn baby.

About neural tube defects

Spina bifida, encephalocele and anencephaly are the most common neural tube defects.

Spina bifida happens when lower parts of the neural tube don’t close properly during a baby’s development in the womb. This leaves part of the spinal cord exposed and easily damaged.

In severe cases of spina bifida, the skin, muscle and vertebral bone protecting the spinal cord nerves might all be missing.

Children with spina bifida can have trouble walking. They can have muscle weakness and loss of feeling in affected areas. They can also have problems with fluid pressure on the brain, and control of their bladder and bowel. They can have difficulty with learning, attention and memory.

Encephalocele happens when the skull doesn’t form properly to protect the brain. Part of the brain might bulge out. This is because the top of the neural tube hasn’t formed properly. Children with encephalocele might have an intellectual disability, cerebral palsy, seizures or other difficulties.

Anencephaly is a very serious neural tube defect. It happens when part of the brain doesn’t develop. Babies with anencephaly are usually stillborn or die shortly after birth.

Causes of neural tube defects

In the first month of pregnancy, the unborn baby starts to develop its most important organs. A tube (called the neural tube) develops to form the brain, spinal cord and spine. If this tube doesn’t form properly, it’s called a neural tube defect. Any part of the tube can be affected.

Preventing neural tube defects

Getting enough of a vitamin called folate (or folic acid) before and during pregnancy can prevent many neural tube defects. Folate is essential to the development of the brain, spine and nerves. Folate is safe. It’s present in our diet, especially in green leafy vegetables, liver and wholegrain cereals.

Taking folate supplements before and during pregnancy can help.

Doctors say that you should start taking folate as soon as you decide to try getting pregnant. Otherwise, by the time you find out you’re pregnant, your baby’s spine and brain have already started developing.

The recommended dose is 0.5 mg of folate every day. But some people with a greater risk of having a baby with a neural tube defect need to take more.

Diagnosis of neural tube defects

Most neural tube defects are detected during pregnancy through ultrasound scans. But mild cases of spina bifida can be hard to pick up and might be diagnosed only after birth. In these cases, visible signs of the condition help professionals make a diagnosis.

You can read more about pregnancy ultrasounds in our article on tests during pregnancy.

Support and treatment for children with neural tube defects

Many people with spina bifida live active, independent lives.

Neural tube defects can’t be cured. But children with neural tube defects can get treatment to improve their quality of life.

Treatments depend on the problems children have. Children often need a lot of treatment throughout their lives. Treatment might include physiotherapy, a wheelchair or brace, or a tube to help empty the bladder. This is called a catheter.

In the case of spina bifida, surgery can often repair the opening in the spine.

If your child has a neural tube defect, you and your child might work with some or all of the following professionals:

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Last updated or reviewed
04-09-2014

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Raising Children Network is supported by the Australian Government. Member organisations are the Parenting Research Centre and the Murdoch Childrens Research Institute with The Royal Children’s Hospital Centre for Community Child Health.

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