Understanding spina bifida and hydrocephalus

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Examining the impact on learning of these often misunderstood conditions

What are spina bifida and hydrocephalus?

Spina bifida, which literally means split spine, is a condition which affects the development of the spinal cord, and often the brain, of unborn babies. The spinal cord is a tube of nerves in the back, and these nerves provide all the connections between the brain and the body for such things as sensation and control. Spina bifida lesions can occur on any part of the spinal cord, but are commonly seen in the lumbar or sacral (lower back) areas. The effects they have depend largely on the position of the lesions on the spinal cord.

Hydrocephalus is a condition that affects the brain. We all produce a fluid called cerebrospinal fluid (CFS); its purpose is to protect the brain from injury as well as to help wash away waste & transport nutrients. Hydrocephalus occurs when CSF, which flows around the brain, becomes trapped in the spaces inside the brain. Because the brain is in an enclosed part of the skull, the pressure rises and, without treatment, one can become very ill. The usual treatment is to insert a tube or shunt from the brain into the abdomen, or occasionally into another site.

The brain, learning & hydrocephalus

Our understanding of how the brain works has improved markedly in recent years, and advances in technology, which allow scientists to study the living brain under varying conditions, have greatly enhanced research. However, there is still so much to learn about the effects of hydrocephalus, and, as our knowledge continues to increase, we will need to continually update our skills and understanding in order to help children with hydrocephalus in our education system.

It is helpful to view children and young people with hydrocephalus as having a range of specific learning difficulties, which can be ameliorated by sensitive and appropriate teaching and learning strategies. Continual observation and assessment is essential for all children, even those who seem to have few, if any, difficulties, in order that any changes in function are identified at an early stage. As with children with dyslexia, it is common for these difficulties to become apparent at around the age of seven years, although this can vary for each individual.

Memory

Hydrocephalus in children and young people has an effect on memory and processing speed. Many pupils have short-term memory and working memory difficulties, and retrieval and recall of information can take time. Transferring skills learned in one situation and applying them in another situation can also be difficult.

It is well established, through anecdotal evidence and research with neuropsychological assessments, that people with hydrocephalus and spina bifida have impairments in various aspects of memory and learning. Research to date has only looked at the ability to learn new material, for example lists of words or stories, and there has been little investigation into the nature of autobiographical memory (one’s memory of one’s own life).

Autobiographical memory is a vital part of our make-up; it creates a narrative of our life, enabling us to have a sense of who we are, and it forms the basis for all of our judgements and goals. Given the typical brain pathology that occurs in hydrocephalus and spina bifida, and existing evidence for difficulties with new learning, it is reasonable to expect that people with hydrocephalus and spina bifida may have impoverished autobiographical memory.

Research with people who are known to have autobiographical impairments, for example those with acquired amnesia, suggests that the psychological and behavioural implications of this are extensive. For example, autobiographical memory is a key factor in insight: in order for us to learn from our experiences, both positive and negative, it is vital that we are able to accurately recall and reflect on those experiences. Autobiographical memory is also vital to our sense of self, and there is overwhelming evidence that this is linked to psychological well-being and, in particular, our ability to form healthy attachments.

On-going research has also revealed that people with hydrocephalus have difficulties dealing with the future. This causes difficulties in trying to decide what to do in the future, which is vital at certain stages of our lives, such as when we are choosing options at school or what career to study for. Autobiographical memory also impinges on this process; pupils with hydrocephalus and spina bifida often have weak knowledge about themselves, their strengths and weaknesses, and strategies that may be implemented in order to tackle certain issues, so future planning is rendered more problematic.

The case of “C” highlights these issues. She was in the final year of her degree course in publishing, in December 2008, when she was referred to the Association for Spina Bifida and Hydrocephalus (ASBAH) by the London College of Communication (LCC).

C is a very determined young lady, who has hydrocephalus and vater syndrome. She remained in mainstream schools for her primary and secondary education.
Although C managed her course well with support, she had great difficulty in concluding her assignments; she was unable to write down just the specific information that was being asked of her, and instead she put in all the information she had on a given subject, much of which was often not pertinent. When she was asked to delete the pieces of information that were not needed, she was unable to identify these. This is very common with people who have hydrocephalus.

The Student Support Service at LCC is quite experienced in dealing with students with hydrocephalus, and they were extremely supportive of C. After spending some time with her support officer, ASBAH looked at certain strategies that may help C, for example highlighting key phrases and words, using different coloured paper and breaking assignments down into “bite-sized” chunks.

Many pupils with hydrocephalus have great difficulty in finishing assignments, essays and projects. Although further research and investigation is needed to determine why these difficulties occur, in the meantime, it is important that we all, educational establishments, parents and other professionals alike, continue to work together in order to support these young people.

Further information

As part of its work with children, young people and their families, ASBAH has produced a series of booklets about transition, for parents, young people and employers, giving clear strategies that may be implemented in order to help the person with hydrocephalus and/or spina bifida.

For further information please visit:
www.asbah.org

Article first published in SEN Magazine issue 43: November/December 2009.

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