Spina bifida

Spina bifida happens when a baby's spinal column and spinal cord don't form properly in the womb. This leaves a gap or split in the spine, and that damages the central nervous system.

Spina bifida is a type of neural tube defect. The neural tube is the name for the cells that become the spinal cord while a baby is growing in the womb. These cells start out flat, then roll up and close into a tube as the baby develops. If the tube doesn't close completely, the backbone that protects the spinal cord doesn't form as it should. This often results in damage to the spinal cord and nerves, and it can happen anywhere along the spine.

Spina bifida comes in 2 types.

Open spinal defect, also called myelomeningocele, is the most severe type of spina bifida. In this condition the baby's spinal cord and the protective membranes around it lie outside the spinal canal, out in the open. Often, spinal fluid also leaks around the defect.

The defect must be closed very soon after birth.

A closed spinal defect, also called spina bifida occulta, is the less severe form. It usually causes mild neurological symptoms or none at all. The baby may need surgery later in life.

Spina bifida can cause symptoms like these:

• weakness or complete loss of movement of the lower limbs
• changes in sensation in the legs and/or torso
• curvature of the spine because of muscle weakness (scoliosis)
• urinary incontinence
• urinary retention
• repeat or frequent urinary tract infections
• kidney problems
• bowel incontinence, leading to constipation and/or diarrhoea
• hydrocephalus (excess fluid on the brain)
• skin problems
• latex allergy

No one knows exactly what causes spina bifida. But some things can raise the chance of a baby developing the condition.

Not having enough folic acid during pregnancy can increase the chances of a child having spina bifida.

Folic acid (also known as vitamin B9) is found in foods like peas, broccoli and spinach. It's also added to some foods, such as some breakfast cereals.

Taking folic acid supplements can reduce the risk of spina bifida in unborn babies. You can get folic acid tablets from pharmacies and supermarkets, and a doctor may also be able to prescribe them for you.

If someone in your family has spina bifida, you may be more likely to have a baby with the condition. And if you've already had a child with spina bifida, the chance of having another child with it goes up.

With a family history of spina bifida, your doctor will likely prescribe a higher dose of folic acid for you. Ideally, you should take it:

• before you become pregnant
• for at least the first 12 weeks of pregnancy

Some medicines are linked to a higher risk of having a baby with spina bifida. Valproate and carbamazepine, which are used to treat epilepsy, are two examples.

If you're worried that your medicine may raise the risk of spina bifida, speak to your doctor:

• before becoming pregnant
• as soon as possible if your pregnancy is unplanned

Don't stop taking any medicine you've been prescribed without checking with your doctor or another health professional first. You could make yourself very ill.

Spina bifida can sometimes be picked up during the mid pregnancy scan, which usually takes place between 18 and 21 weeks of pregnancy.

In some cases, though, spina bifida isn't diagnosed until after the baby is born.

How spina bifida is treated depends on which type you or your child has.

If your child is diagnosed with a closed spinal defect, a neurosurgeon will talk through how to manage it with you. Your child may not need surgery.

If an open spinal defect (open spina bifida) is found before your baby is born, you may be offered prenatal surgery. This means a surgeon operates on your baby before you've given birth. The operation closes or covers the spina bifida lesion. The doctors will talk with you about the benefits and risks of the surgery during pre-natal counselling.

If your child isn't diagnosed until after birth, or prenatal surgery hasn't taken place, they'll be referred to a specialist team.

Your child will see a paediatric neurosurgeon shortly after birth. The surgeon will assess the defect and discuss the surgery with you.

If your child needs surgery, it will probably take place in a specialist unit within 48 to 72 hours.

During the operation, the surgeon puts the spinal cord and any exposed tissues or nerves back into the correct place. They then close the gap in the spine and seal the hole with muscle and skin. Occasionally, plastic surgeons may be involved if the defect is large.

Surgery will close the gap, but it can't restore any function your child has already lost.

If your child has already developed hydrocephalus, the surgeon may:

• place a shunt at the same time as their spina bifida surgery
• suggest a watch and wait approach

People with spina bifida can live full lives, though some may need help managing the condition. How much help you need depends on how spina bifida affects you or your child.

Physiotherapy for spina bifida is aimed at your particular needs, and it can help improve and maintain your posture, coordination, strength and balance.

A physiotherapist may teach you exercises to do yourself. These work to strengthen and stretch your muscles. If you need them, the physiotherapist will also recommend walking aids to help you get around.

Occupational therapists help people get through everyday tasks. They do this by finding new ways for you or your child to do them. They can also help you break an activity down into smaller movements, which builds confidence.

Occupational therapists also know a good deal about the medical aids and technologies that are available, so they can suggest the ones that may help you or your child.

If you have spina bifida and can't use your legs at all, you may need a wheelchair. Leg braces and splints can also help, whether they're for you or for your child.

If you or your child with spina bifida has problems with bone development, such as a club foot, an orthopaedic team will see you. The team will suggest how these problems should be managed, and they may recommend surgery.

Some people with spina bifida have trouble controlling their bladder. Treatment for these bladder problems might include:

• medicines to help relax the bladder, so you feel the urge to pee less often
• antibiotics to help prevent urinary and kidney infections
• urinary catheterisation to help prevent infection
• bladder surgery to make the bladder bigger so it can hold more urine (pee), or to make an opening in the belly for a catheter

If you or your child has bladder problems that need surgery, you'll be seen by general surgeons.

Bowel problems, constipation in particular, can affect people with spina bifida. Treatment might include:

• laxatives, a type of medicine that helps empty the bowels
• suppositories and enemas, medicines put into the bottom to help relieve constipation
• anal irrigation, which uses specialist equipment to pump water through a tube in your bottom and empty the bowel
• antegrade continence enema (ACE), a surgery that links the bowel to a small opening (stoma) on the surface of the abdomen (tummy)
• colostomy, a surgery that connects one end of the large bowel to an opening in the tummy, so waste can be collected in a pouch

If you or your child has bowel problems that need surgery, you'll be seen by general surgeons.

After surgery for spina bifida, you or your child will probably have a lot of follow-up appointments. Some may be with the surgeon who did the operation. You may also be asked to attend specific spina bifida clinics, where you'll see different specialists, including:

• neurologists
• neurosurgeons
• general surgeons
• orthopaedic surgeons
• physiotherapists
• specialist nurses
• urologists
• psychologists
• occupational therapists
• orthotists