Introduction
The neural tube is a part of your baby that closes as they grow in the first month, or 15-28 days, of pregnancy. The neural tube becomes the brain and spinal cord.
When the neural tube closes properly, your baby’s brain and spine will develop normally. A neural tube that does not close properly can cause damage or differences in how the brain and spinal cord grow. These are called neural tube defects.
Neural tube defects cause conditions like:
- spina bifida- when the lower parts of the neural tube do not close properly, affecting the spine
- encephalocele- where the skull does not form properly, causing the brain to bulge out
- anencephaly- where part of the brain does not develop because of a difference in the top part of the neural tube. Babies with this condition will only live for a few days after they are born.
Children with neural tube defects will need ongoing support and treatment from healthcare professionals that will look different depending on how severe the condition is.
Parents can lower the risk of neural tube defects by starting to take a folic acid supplement at least one month before they try to have a baby and continuing for at least three months after they become pregnant.
If you have an unexpected pregnancy, you should speak to your doctor or midwife and start a folic acid supplement as soon as possible.
Signs and symptoms
Children who have conditions caused by neural tube defects will usually have issues with their brain and spinal cord.
Signs and symptoms will depend on the condition, and how severe it is.
Some general symptoms can include:
- physical disability and issues with movement
- being unable to control their bladder and bowel, or go to the toilet
- issues with hearing and vision
- intellectual disability
- differences in physical appearance.
Diagnosis
Neural tube defects are usually found during the second trimester of pregnancy, between 14 and 20 weeks. They can be diagnosed through:
- ultrasound scans - that show how your baby’s brain and spine are growing
- the maternal serum screening test - which will let you know if there is a higher or lower chance of conditions like neural tube defects
- 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 up to you to decide whether you want to do any extra scans and tests during pregnancy.
Some families will have a history of health conditions or syndromes. Testing can help them prepare to support their baby or decide on treatment options.
The decision is personal, and there is no right or wrong answer.
If a neural tube defect is mild, it might not be found until your baby is born. Your baby’s doctor will use tests like MRI or X-ray to check the brain and spinal cord if your baby shows signs and symptoms after they are born.
Treatment
Neural tube defects cause the brain and spinal cord to grow differently. This means that conditions caused by neural tube defects cannot be cured.
Children with these conditions will need ongoing treatment and support to manage their condition and make sure they live their best possible lives.
Your child’s treating team will let you know what the best treatment options are based on:
- how old they are
- the type of condition
- how severe the condition is
- any other health conditions they have
- what their individual needs are.
Children usually need physiotherapy, occupational therapy, and equipment to help them with movement and everyday life.
Some children will need surgery to repair any openings in the skin around the spinal cord, or the skull.
Management
Neurogenic bladder and bowel
Most children with a neural tube defect condition will have issues controlling their bladder and bowel. This is because the damage or differences to the brain and spinal cord growth can affect the signals that help them to:
- know or feel when they need to go to the toilet
- control the muscles that let them “hold on” to a wee or poo
- be able to do a wee or poo physically.
Issues with signals between the brain, bladder and bowel are called neurogenic bladder and neurogenic bowel.
If your child has a neurogenic bladder or bowel, they might need support and treatment like:
- fluids and diet for good bladder and bowel health
- medication
- medical equipment like urinary catheters - tubes that are inserted to empty the bladder
- extra hygiene steps to prevent infection
- surgery.
Your child’s treating team will discuss treatment options and help you to work out a management plan.
Skin issues
Children with a neural tube defect condition are more likely to have skin problems caused by:
- limited movement
- muscle weakness
- lack of feeling
- poor blood circulation and temperature regulation.
Skin issues might include:
- discolouration of the skin, including red marks that do not fade within 10 minutes
- blisters or sores from constant pressure on the skin
- burns that are not felt properly
- bleeding
- infections
- wounds that take longer to heal.
You can help your child to take care of their skin and avoid injuries by following these tips.
Burns
- avoid sitting your child too close to open fires or heaters
- always sit your child at a table when eating hot food and drink, and never place food or drink on your child’s lap
- do not use hot water bottles
- always check the temperature of bath and shower water and swirl the water around to reduce hot spots
- check the temperature of metal and plastic play equipment, sidewalks and sand
- check the temperature of metal seat belts and foot plates on wheelchairs.
Pressure injuries and rashes
- check your child’s skin regularly every day, especially areas that have constant contact with equipment like the seat of a wheelchair
- make sure your child wears shoes that fit correctly or thick socks to protect their feet
- always check your child’s skin when they start using new splints, orthoses, or shoes
- move and shift your child’s weight regularly to take pressure off parts of the body
- support your child to maintain a healthy weight for their age
- get advice from your occupational therapist about the equipment needed for pressure relief.
Hygiene and sun safety
- always apply sunscreen, a hat and protective clothing, including shoes you’re your child is outdoors
- make sure your child’s skin folds, including in between their toes, are completely dry after each bath or shower
- change your child’s nappies, pads, and pants regularly, and as soon as possible after a poo
- use barrier creams around the anus, vulva, and penis to prevent and treat nappy rash.