Spina bifida is a Latin term that means “split spine” and is used to describe a series of birth defects that affect the development of the spine and central nervous system. The central nervous system is made up of the brain, the cranial nerves and spinal cord. The spinal cord runs from the brain down the back, and consists of nerve cells and bundles of nerves that connect all parts of the body to the brain.
During the first month of life, an embryo grows a primitive tissue structure called the neural tube. As the embryo develops, the neural tube closes at each end and develops into the brain and spinal cord. In cases of spina bifida, however, something goes wrong with the development of the neural tube and the spinal column (the ridge of bone that surrounds and protects the nerves) does not fully close.
Spina bifida is much more common in white people than in blacks or Asians. At present, the cause is unknown and research continues. There seems to be a familial tendency to the occurrence of this disorder, although multiple environmental factors and exposure to many toxins/ medications/ infections have also been suggested as contributing to its development. It is now established that folic acid, given before and during the early stages of pregnancy, can substantially reduce - by perhaps over 70% - the occurrence of the disorder in high risk and first pregnancies.
There are different types of spina bifida, including:
This article focuses on myelomeningocele and this is the type of spina bifida that will be referred to whenever the term spina bifida is used.
Myelomeningocele is the most serious type of spina bifida. It is estimated that it affects one baby in every 1,000 that are born in Britain.
In myelomeningocele, the spinal column remains open along several vertebrae (the disc-shaped bones that make up the spine). The membranes and spinal cord push out to create a sac in the baby’s back. Sometimes the sac is covered with membranes called meninges, although it often remains open, leaving the nervous system vulnerable to infections that may be fatal.
In most cases of myelomeningocele, surgery can be carried out to close the defect. However, extensive damage to the nervous system will usually have already taken place. Damage can result in a range of symptoms including:
Most babies with myelomeningocele will also develop hydrocephalus, which is a condition where there is excess cerebrospinal fluid (CSF). CSF is the fluid that surrounds the brain.
The build-up of CSF is caused by problems with the development of the neural tube. Hydrocephalus needs to be treated with surgery because the extra pressure that the fluid places on the brain can cause brain damage.
When a baby is born with spina bifida, surgery to repair their spine will usually take place within 48 hours of birth. During surgery, the surgeon place the spinal cord, which is the bundle of nerves that connects the brain to the rest of the body, and any exposed tissues or nerves, back into the baby’s body. They then close any gap in the vertebrae (the disc-shaped bones that make up the spine) and seal the spinal cord with muscle and skin.
Further corrective surgery may be required if the child develops problems with the development of their bones, such as scoliosis (abnormal curvature of the spine) or dislocated joints.
Physical therapy is one of the most important ways of helping children to manage their condition and to make them as independent as possible. For spina bifida, the main aims of physical therapy are to prevent the child’s leg muscles from weakening and to keep the joints supple.
The physiotherapist teaches the child a number of physical exercises that they can carry out every day to help maintain their leg muscles. Special leg braces may also be used to help support the child’s legs. Bladder and bowel challenges are common and there are a range of management options to maintain health and dignity.
Over recent years, advancements in the treatment of spina bifida have resulted in a more positive outlook for the condition.
For example, before the 1960s, most children with spina bifida would die during their first year of life. However, today it is likely that children will survive into adulthood. Spina bifida can be a challenging condition to live with, but many adults with the condition are able to lead independent and fulfilling lives.
SHINE - Spina bifida Hydrocephalus Information Networking Equality - is a registered charity which helps and supports families and individuals affected by spina bifida and hydrocephalus.