Neural tube defects are brain and spinal cord abnormalities which can be prevented by getting enough folate before and during pregnancy. Children with these defects need a lot of treatment and support, including surgery, physiotherapy and wheelchairs. Many professionals work with children who have neural tube defects.
Neural tube defects are problems that can occur when the neural tube doesn't form properly. This can affect any part of the tube, including the brain, spinal cord, and spine. Neural tube defects can happen during the first month of pregnancy, and experts don't know exactly why they occur. Some factors that may contribute to neural tube defects include genes and a lack of folate before and during pregnancy. The most common types of neural tube defects are spina bifida, encephalocele, and anencephaly.
Spina bifida is a birth defect that happens when the 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 bones protecting the spinal cord nerves might all be missing. This can cause problems with walking, muscle weakness and loss of feeling, fluid pressure on the brain, and control of bladders and bowels. Children with spina bifida can also have difficulty with learning, attention, and memory.
Encephalocele is a birth defect in which the skull doesn’t form properly to protect the brain. This can lead to part of the brain bulging out. This is because the top of the neural tube hasn’t formed properly.
Babies with severe encephalocele might not survive beyond the first day of life.
Children with mild forms of encephalocele might have intellectual disability, cerebral palsy, seizures or other difficulties.
Anencephaly is a birth defect in which a baby's brain and skull do not fully develop. Most babies born with anencephaly die shortly after birth.
Folate is essential for the development of the brain, spine and nerves. It can help to prevent many neural tube defects if taken before and during pregnancy. The recommended dose is 0.5 mg of folate every day, but people who are at a higher risk for having a baby with a neural tube defect may need to take a higher dose. Folate is safe and present in our diet, especially in green leafy vegetables, liver and wholegrain cereals. Taking folate supplements before and during pregnancy can help to prevent neural tube defects. Doctors say that you should start taking folate as soon as you decide to try getting pregnant so that your baby’s spine and brain have already started developing by the time you find out you’re pregnant. If you’re at higher risk for having a baby with a neural tube defect, be sure to talk to your doctor about how much folate you should take.
Neural tube defects can be hard to detect, but often show up during a standard ultrasound scan in the 20th week of pregnancy. In some cases, the condition may not be diagnosed until after the baby is born. If there are visible signs of the condition, it will help professionals make a diagnosis.
Neural tube defects cannot be cured, but children with these defects can have treatments and therapies to manage their condition and improve their quality of life. Treatment depends on the specific conditions and symptoms that the child has. For example, children with spina bifida might need surgery to repair the opening in the spine. Babies with encephalocele always need surgery to repair the opening in the skull.
Children and teenagers with spina bifida and encephalocele often need a lot of other treatment and support, which might include physiotherapy, wheelchairs or braces, or tubes (called catheters) to help empty their bladders. Although they face challenges, many people with spina bifida and milder forms of encephalocele go on to live active, independent lives.
If your child has a neural tube defect, it is important to look after your own wellbeing and get support for yourself too. If you are physically and mentally well, you will be better able to care for your child.
If your child has a neural tube defect, you and your child might work with some or all of the following professionals:
continence nurse
neurologist
occupational therapist
orthopaedic surgeon
paediatrician
physiotherapist
social worker
urologist.
The National Disability Insurance Scheme (NDIS) might support your child with a neural tube defect, as well as you and your family.
