A real reason to care…
The term “spina bifida” means “split spine”. The spine contains 33 vertebrae, which form a protective tube for the nerves that make up the spinal cord; if one or more of these doesn’t form properly in early pregnancy, the nerves may be damaged. This damage, and the complications in the central nervous system that can result, are covered by the term spina bifida.
Spina bifida has a huge effect on the lives not just of affected individuals, but also of their friends and families. The obvious mobility issues caused by the condition often make the use of a wheelchair or walking frame essential, and – as in Christopher’s case – it may be necessary to carry out extensive home alterations.
Continence problems can also arise if the bowel and bladder are affected, and in recent years it has become apparent that spina bifida often goes hand-in-hand with an allergic sensitivity to latex and derivative products.
The Types of Spina Bifida
The degree of nerve damage caused in spina bifida varies widely depending on how high up the spine the damage has occurred, and how well the spinal cord below the affected area works. The condition can be split into several distinct types.
Spina bifida occulta affects up to one in ten people, and may include visible signs of a dimple or small hair growth on the back. This is a mild form of spina bifida: the spinal cord is undamaged and so disability is rare. In fact, many people only find out that they have it when they have a back x-ray for an unrelated condition.
Spina bifida cystica involves a sac or cyst on the back, covered by a thin layer of skin. It has two forms:
Meningocele, where the sac contains tissues that cover the spinal cord, as well as cerebro-spinal fluid. The nerves are not usually damaged and so there may be little disability present. This is the least common form of spina bifida.
Myelomeningocele is the most serious and more common of the two forms of cystic spina bifida. In this case, the cyst contains not only the tissue and cerebro-spinal fluid, but also nerves and part of the spinal cord, so there is always some paralysis and loss of sensation below the damaged area. The amount of disability depends on where the cyst is located, and the level of nerve damage involved. Sufferers of this kind of spina bifida often experience incontinence and urinary tract infections.
Myelomeningocele is often accompanied by a condition called hydrocephalus, where increased pressure in the fluid in the brain causes very young children’s heads to swell. If untreated, hydrocephalus can gradually damage brain function.
What Causes Spina Bifida?
The causes of spina bifida are not known, but are believed to involve genetic as well as environmental factors. Faults in the LPP1 gene have been identified as contributing to the condition. A couple with an affected child has a 1-in-35 chance of another, and an affected person has a 1-in-35 chance of having an affected child.
We do know, however, that spina bifida forms very early on in a child’s development. Antenatal blood tests can reveal the condition during pregnancy and 90% of cases are picked up during ultrasound scans.
Treatment and Prevention
While research continues into what causes spina bifida, great strides have already been made in treating its effects and combatting its appearance in the first place.
Shortly after birth, a paediatric surgeon or paediatric neurosurgeon will decide whether or not the defect in the back should be repaired surgically. Surgery takes place in a specialist unit, usually within 48 hours. If the defect in the spinal cord is minor, no treatment is necessary.
Physiotherapy helps with mobility difficulties, and considerable progress has been made in the field of mobility aids. If passing urine normally is problematic, the regular use of a urinary catheter may be necessary; again, great progress has been made here too. However, the latex allergy which is prevalent in those affected by spina bifida can be an issue in this area.
Research has shown folic acid to be the best prevention against the development of spina bifida in an unborn child. The risk of spina bifida can be reduced by up to 70% if a woman takes folic acid supplements from a month before conception through to the twelfth week of pregnancy.
