Spina Bifida

Spina bifida is a term that is used to describe a number of different birth defects that contribute to problems with the development of the nervous system and the spinal column. Spina bifida results from problems with the neural tube, the structure in which the foetus grows and develops during the first month of pregnancy. In babies with spina bifida, the neural tube does not develop properly and the spinal column does not form fully; instead, gaps are left between the vertebrae (spina bifida literally translates as ‘split spine’. 

There are three main types of spina bifida; these include:

  • Spina bifida occulta: this is the most common form of spina bifida; it occurs as a result of small openings between one or more of the vertebrae.
  • Spina bifida meningocele: this is the least common form of spina bifida; it occurs when the membranes that form a protective surrounding around the vertebrae get pushed out between the vertebrae.
  • Myelomeningolcele: this is the most serious form of spina bifida; it affects 1 in 1000 babies. This condition causes gaps between several of the vertebrae; the membranes surrounding the vertebrae also get pushed out. The protective membranes that have been displaced and the spinal cord then form a sac on the baby’s back; the sac often remains open which makes the baby susceptible to infections and illnesses, which could prove fatal.

What causes spina bifida?

The exact cause of spina bifida remains unknown; it is widely believed that spina bifida is caused by a mixture of genetic and environmental factors, but scientists and health experts have also identified a number of potential risk factors; these include:

  • A lack of folic acid: it is not known how folic acid helps to protect against folic acid, but studies have found that women who have a low intake of folic acid are up to 8 times more likely to have a baby with spina bifida. Pregnant women are advised to take folic acid supplements and eat foods that are naturally high in folic acid, including granary bread, green leafy vegetables (such as watercress and spinach) and certain breakfast cereals (these are usually clearly labelled with ‘added folic acid’ or something along those lines).
  • Certain medications: certain medications can increase the risk of having a baby with spina bifida; medications include those prescribed to treat epilepsy and certain mental health problems.
  • Previous pregnancy that has resulted in spina bifida: women that have had a baby with spina bifida have a slightly higher risk of having another baby with spina bifida (the risk may be increased by between 3% and 8%)
  • Diabetes: having diabetes can increase the risk of having a baby with spina bifida; women with severe diabetes have a higher risk than those with mild diabetes. Women with diabetes may be up to 8 times more likely to give birth to a child with spina bifida.
  • Obesity: women that are obese are more likely to have a child with spina bifida; the more obese a woman is, the more likely they are to have a baby affected by spina bifida.

Symptoms and effects of spina bifida

The severity of the symptoms of spina bifida depends on the location of the opening in the spine and the subsequent effects of the opening; some children may develop hydrocephalus, which occurs when fluid collects on the brain. Babies with hydrocephalus often display much more severe symptoms. Symptoms that are commonly caused by spina bifida may be divided into 3 different categories; these include cognitive, mobility and bladder and bowel symptoms.

  • Cognitive symptoms: children with spina bifida often develop learning difficulties and have below average intelligence (children with spina bifida usually have an IQ of around 80; the average is 100). Specific symptoms include:
  • A short attention span
    • Lack of concentration
    • Difficulties with reading
    • Difficulties with language and communication
    • Difficulties with co-ordination
    • Difficulties with solving problems and logical thinking
    • Difficulties grasping abstract concepts
  • Mobility symptoms: damage to the nerves that is caused by spina bifida also leads to problems with movement and co-ordination. Some children with spina bifida may also suffer from a degree of paralysis (this is often experienced in the lower limbs). Subsequent effects of nerve damage and paralysis include muscle wastage, dislocated joints, scoliosis (curvature of the spine) and changes in the shape of the bones.
  • Bowel and bladder symptoms: many children with spina bifida suffer from bowel incontinence as a result of the weakening of the sphincter muscles, which open and close during urination.

Treatment for spina bifida

Once a baby has been diagnosed with spina bifida they will be cared for by a multi-disciplinary team of health professionals including paediatricians, neurologists, physiotherapists, occupational therapists, urologists, social and health workers and psychologists. Each child will also be given a key worker, who will work closely alongside the child and their parents or carers.

Usually, the first stage of treatment will involve surgery on the spine; this usually takes place within the first 2 days of the baby’s life. Surgery is used to fuse the gaps between the vertebrae and correct the positioning of the protective membranes and the spinal cord. If the baby has developed hydrocephalus, this will also be addressed during the procedure; a shunt will be fitted to drain away the fluid. After surgery, the care team will work to make the child’s life as normal as possible and help them to maintain a degree of independence by improving their movement, addressing issues such as incontinence and improving their posture; they will also advise parents and carers about caring for their children at home.

Children and adults with spina bifida visit their specialist team on a regular basis; often, with the correct treatment and additional help and support at home and at school or in the workplace, they can live a normal and fulfilling life. Some patients may require further surgery and some may need medication on a long-term basis.

Preventing spina bifida

The most effective means of prevention is having a high intake of folic acid throughout pregnancy; this can be achieved by taking folic acid supplements and eating plenty of green leafy vegetables and granary bread. Experts recommend pregnant women take in 0.4mg of folic acid per day.

Guide to Bone and Muscle Disorders

Bone and Muscle

Fibromyalgia

Hypotonia

Muscular dystrophy

Osteomyelitis

Osteoporosis

Pagets disease

Spina bifida

Spinal muscular atrophy

Living with a disability