Spina Bifida Hydrocephalus Ireland (SBHI) is a national organisation supporting more than 2,000 people who know Spina Bifida and/or Hydrocephalus to be a reality in their lives.
We work to increase awareness about Spina Bifida and Hydrocephalus, as well as the essential funds which ensure that our unique service is sustained. Around 40 babies are born with Spina Bifida each year in Ireland - which is one of the highest incidence rates in the world – and 1 in 1,000 pregnancies are affected by Hydrocephalus.
SBHI supports hundreds of individuals and families across Ireland as they seek to live fulfilled lives with Spina Bifida and/or Hydrocephalus.
Spina Bifida is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord. It is a condition leaving many people with significant mobility issues, continence problems, and additional concerns including pressure sores and the challenges of social isolation and loneliness.
For those born with Hydrocephalus, their body is unable to drain away the fluid which we all have in our brains, this builds pressure which is usually relieved by a shunt (a rubber tube) that is fitted internally to drain the fluid away into the stomach.
It is common for both Spina Bifida and Hydrocephalus to be experienced at the same time from birth. Hydrocephalus can also develop alone in later life, usually from head impact injuries.
Spina Bifida and Hydrocephalus are life-long conditions and although there is no ‘cure’, there are many ways in which those living with Spina Bifida and/or Hydrocephalus are enabled to overcome challenges.
This is what the staff at SBHI do – we deliver unique services which ensure that everybody affected receives the best support available to them. We achieve this through our team of Family Support Workers, a Youth and Respite Team, our Education Training work, and through our Resource Centre in Clonshaugh.
Together these professionally trained staff offer comprehensive support to everyone living with Spina/Bifida and/or Hydrocephalus across Ireland.