Spina bifida

Spina bifida is when a baby’s spinal column and spinal cord doesn’t form properly in the womb. This causes a gap or split in the spine. This causes damage to 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 when a baby is growing in the womb. These cells start out flat, then roll up and close into a tube as a baby develops. If this tube does not close completely, the backbone that protects the spinal cord does not form as it should. This often results in damage to the spinal cord and nerves. This can happen anywhere along the spine.

Types of spina bidifa

There are 2 types of spina bifida.

Open spinal defect (myelomeningocele)

Open spinal defect is the most severe type of spina bifida. It means that the baby’s spinal cord and protective membranes are outside the spinal canal, in the open. Often, there’s also spinal fluid leakage around the defect.

This must be closed very soon after birth.

Closed spinal defect (spina bifida occulta)

Closed spinal defect is less severe. It usually causes mild or no neurological symptoms. The baby may need surgical intervention later in life.

Symptoms of spina bifida

Spina bifida can cause symptoms like:

• weakness or complete loss of movement of lower limbs
• sensation changes in the legs and/or torso
• curvature of the spine due to 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

Causes of spina bifida

It’s not known exactly what causes spina bifida. But, there are some things that can increase the risk of a baby developing the condition.

Lack of folic acid

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. Its added to food like some breakfast cereals.

Taking folic acid supplements can reduce the risk of spina bifida in unborn babies. Folic acid tablets are available from pharmacies and supermarkets. A GP may also be able to prescribe them for you.

If you’ve a family member with spina bifida, you might be more likely to have a baby with the condition.

If you’ve had a child with spina bifida, the chance that you’ll have another child with the same condition increases.

If you’ve a family history of spina bifida, your GP will likely prescribe a higher dose of folic acid for you to take. Ideally, you should take this:

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

Medicine

There are some medicines that are linked to an increased risk of having a baby with spina bifida. These are medicines like valproate and carbamazepine (used to treat epilepsy).

Treating spina bifida

The treatment of spina bifida will depend on what type you or your child has.

Treating a closed spinal defect

If your child is diagnosed with a closed spinal defect, a neurosurgeon will discuss management with you. Your child may not need surgery.

Treating an open spinal defect

If an open spinal defect has been diagnosed before birth, you may be offered prenatal surgery (when a surgeon operates on your baby before you’ve given birth). This surgery will close or cover a spina bifida lesion. The benefits and risks of surgery will be discussed with you during pre-natal counselling.

If your child is not 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 will discuss the surgery with you.

If they need surgery, it’ll probably take place in a specialist unit within 48 to 72 hours.

During surgery the surgeon will put the spinal cord and any exposed tissues or nerves back into the correct place. They’ll 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.

Although surgery will close the gap, it will not be able to 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, but may need help managing their condition.

The help you need will vary depending on how your spina bifida affects you or your child.

Physiotherapy

Targeted physiotherapy can help improve and maintain posture, coordination, strength and balance.

The physiotherapist may teach you physical exercises you can do. These will aim to strengthen and stretch your muscles.

If needed, a physiotherapist will also recommend walking aids to help you get around.

Occupational therapy

Occupational therapists help people to complete everyday tasks. They do this by finding new ways that you or your child can complete them. They can also help you break down activities into smaller movements, building confidence.

Occupational therapists also have good knowledge of the medical aids and technologies available. They’ll be able to suggest the ones that can help you or your child.

You might need a wheelchair if you’re unable to use your legs at all.

Other mobility aids that can help you or your child include leg braces and splints.

Treating bone and joint problems

If you or your child has problems with bone development (like a club foot) you’ll be seen by an orthopaedic team. They’ll suggest how these conditions should be managed. They may recommend surgery.

Treating bladder problems

Some people with spina bifida have problems controlling their bladder.

Treatment for bladder problems might include:

• medicines to help relax the bladder to reduce the urge to pee too 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.

Treating bowel problems

Bowel problems, like constipation, can be a problem for people with spina bifida.

Treatment for bowel problems might include:

• laxatives – a type of medication to help empty the bowels
• suppositories and enemas – medicines put into the bottom to help relieve constipation
• anal irrigation – specialist equipment that pumps water through a tube in your bottom to empty the bowel
• antegrade continence enema (ACE) – surgery that links the bowel and a small opening (stoma) on the surface of the abdomen (tummy)
• colostomy – surgery that connects one end of the large bowel through 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.

Follow-ups

After surgery, you or your child are likely to have a lot of follow up appointments. This may be with the surgeon who did the surgery. You may also have appointments at specific spina bifida clinics. There, you’ll see different specialists, including:

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