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Insight

Supporting families and individuals affected by spina bifida and hydrocephalus during Spina Bifida Awareness Week

26/10/2020
UK charity Shine, the new name for the Association for Spina Bifida and Hydrocephalus (ASBAH), is raising awareness of the condition among GPs, schools and the general community during Spina Bifida Awareness Week 23-30th October.

Shine's 'Back to Front' initiative is a fun way to get involved in Spina Bifida Awareness Week. Simply take a photo of your back, while wearing all of your clothes backwards, and share your photos on social media using the hashtag #BackToFront. You can find out more about 'Back to Front' here.

Spina Bifida, or 'split spine' is a condition arising in babies when the spinal cord and vertebrae do not develop as they should. It is unknown what causes the condition, but a lack of folic acid prior to and in the early stage of pregnancy is a known risk factor.

There are various types of Spina Bifida:  spina bifida occulta, the most common and least serious form, to myelomeningocele (also known as open spinal bifida), the most severe form whereby a baby's spinal cord remains open and the spinal cord and protective membranes push out and form a sac in the baby's back.

It's estimated that between 5-10 per cent of the population may have closed spina bifida, often without realising it. The most serious form of the condition, open spina bifida, is rare. About 700 babies a year in the UK are diagnosed with open spina bifida.

Open spina bifida can usually be diagnosed at the 20-week pregnancy scan, but occasionally the condition is not recognised. In certain circumstances, parents would chose to terminate the pregnancy had the condition been correctly diagnosed and therefore bring a wrongful birth claim following delayed diagnosis. A delay in diagnosis can also mean that corrective surgery may not be possible or as effective by the time it is diagnosed.

The condition is often treated with surgery shortly after birth, although sometimes prenatal surgery is also possible. The results of surgery and the effect of the condition vary greatly from case to case.

Hydrocephalus, or 'water on the brain' is a condition where there is an excess of cerebrospinal fluid (CSF) in the brain, compressing the surrounding tissue and causing increased pressure inside of the skull.

It can be congenital or acquired with various causes, many impossible to predict or prevent. Occasionally, the condition is a result of negligent treatment. Whatever the cause, the impact is the same, increased pressure leading to damage to the brain, particularly if left untreated.

Symptoms depend on the severity of the condition, but typically include headaches, blurred vision, altered mental state and reduced mobility. The condition is a medical emergency and should be diagnosed via an appropriate scan and treated as a priority.

Treatment of the condition involves inserting a shunt into the brain to drain away the excess CSF.

Claims arise for a number of reasons including a delay in recognising and treating the condition, negligent shunt surgery or delays in recognising a blocked shunt that needs replacing.

Pursing a claim following negligent treatment of spina bifida or hydrocephalus generally recognises the need for substantial and ongoing care, assistive technology, adaptations to accommodation and other expenses to enable someone to live their best possible life.

Many people with spina bifida live fulfilling lives – including our client, Gareth, whose condition was not recognised during a routine scan during his mother's pregnancy, leading to paraplegia, incontinence and hydrocephalus. Gareth went on to win a Blue Peter competition that allowed him to take part in the closing ceremony of the Paralympic Games.

For more information about spina bifida and hydrocephalus claims, please contact Mark Bowman by calling 020 7861 4043 or email mark.bowman@fieldfisher.com.

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