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The term ‘spina bifida’ literally means ‘split spine’. It means a baby’s spinal cord and the bones that surround it (vertebrae) have not formed properly and there’s a gap or split in the spine.
The spinal cord itself may also be damaged.
There are three different types of spina bifida and what the condition means for each child depends very much on the type they have. For some, symptoms are barely noticeable. But for others it can have a big impact on many aspects of their life, affecting their physical and cognitive development.
The good news is there have been tremendous improvements in treatment, particularly surgery, in recent years. Before the 1970s, many children born with the most severe form of spina bifida died before their first birthday. Today, the vast majority survive into adulthood and are able to lead independent and fulfilling lives.
During the first month of gestation, an embryo grows in a tube-like structure called the neural tube that is open at either end. These openings usually close, and the neural tube develops into a more complex structure which eventually forms the brain and spinal cord.
But if the tube fails to close properly, this results in a group of problems called ‘neural tube defects’ of which spina bifida is one form.
We do not fully understand why this happens – but evidence shows that taking folic acid supplements in pregnancy can greatly reduce the incidence of myelomeningocele, one of the most severe forms of spina bifida in unborn babies.
There are three main types of spina bifida:
In this form of spina bifida the neural tissue is not exposed to the outside, unlike myelomeningocele (spina bifida aperta) where the neural tissue is exposed and appears like a large blister over a baby’s spine. ‘Occulta’ means hidden.
However there is often some clue to the underlying problem in the form of a skin abnormality - this might be a fatty swelling (lipoma), a dense patch of hair, or a tiny pit in the skin.
There are a variety of different types of spina bifida occulta varying from very mild abnormalities, which might never cause any problems, to more severe abnormalities of development of the lower spinal cord which can cause problems in the lower limbs and in the ability of a child to achieve normal potty training.
Some of the symptoms that can occur include:
Symptoms may occur because the spinal nerves have never developed properly, or because the nerves and spinal cord are being stretched or ‘tethered’ by their attachment to the surrounding tissues. When a child does have symptoms, surgery is often recommended in an attempt to release or ‘untether’ the spinal cord. This surgery is carried out by a paediatric neurosurgeon and can be very effective in improving symptoms or preventing further deterioration.
This type of spina bifida involves the meninges, the membranes responsible for covering and protecting the brain and spinal cord. If the meninges push through the hole in the vertebrae (the small, ring-like bones that make up the spinal column), they form a fluid filled sac called a meningocele that’s visible on the back. The sac is usually covered by a thin layer of skin and can be as small as a grape or as large as a grapefruit.
Babies with meningocele usually have an operation during infancy in which the meninges are pushed back and the hole in the vertebrae is closed. Many will have no other health problems later unless there is nerve tissue involved with the sac.
This is the most severe form of spina bifida and affects an estimated one in 1,000 babies. It occurs when both the meninges and the spinal cord push through the hole in the back. Without the protective covering of skin, there is a very high risk of infection.
Surgery is usually recommended within the first few days of life - the aim is to put the spinal cord back into the spinal canal and repair the defect in the back so that the area is covered with normal, healthy skin.
The problems a child then faces vary a great deal and may show up at different times in development. The abnormal development of the nervous system can result in a range of symptoms which can include partial or total paralysis of the lower limbs, learning difficulties, bowel and bladder incontinence or spinal curvature (scoliosis).
Problems can include:
In addition, some children need subsequent surgery to manage problems with their feet, hips, or spine.
Life can be challenging when your child has a complex condition like spina bifida. Parents will be supported by a multi-disciplinary team including doctors (neurosurgeon, urologist, orthopaedic surgeon, rehabilitation specialist, and general paediatrician), a nurse practitioner, physical and occupational therapists, and a social worker. The aim is to create a lifestyle for you and your child in which the disability interferes as little as possible with normal everyday activities.
The outlook for children - particularly those with myelomeningocele - has improved dramatically in recent decades. Most children progress well at school in full-time education.
Your child will need follow up care from a multidisciplinary team throughout childhood.
Last reviewed by Great Ormond Street Hospital: 25 February 2009
This information has been written by Great Ormond Street Hospital specialists and has also appeared in a different format on the website of The Times newspaper.
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