Oct 13 2011 By Michael Pringle
A CHARITY that supports families of children with serious birth disabilities is relaunching under a new name.
The Association for Spina Bifida and Hydrocephalus will relaunch later this month – under the new name Shine.
The organisation has been in existence for 46 years and is hoping the relaunch will help society to sit up and take notice of the needs of its members and their contribution to their local communities.
About one in every 1000 babies is born with congenital hydrocephalus, a condition that results from a failure of fluid to drain from around the brain.
The condition, which was once often fatal, can also occur at any time in life following illness or injury.
Shine chief executive officer Jackie Bland said: “This remains an overlooked, misunderstood and under-supported disability.
“Parents and children struggle to be listened to and accepted, with the child’s disabilities often being mistaken for bad behaviour and laziness.”
Hydrocephalus is often present alongside spina bifida, a birth defect resulting from the failure of the spine to close properly in the womb.
Spina bifida is the most commonly occurring serious birth defect.
As the baby’s neural tube (developing spinal cord) is forming a fault occurs which means it is left ‘open’.
This occurs before day 28 of pregnancy and taking folic acid for three months before conception can help guard against this occurring.
Jackie added: “We know that up to 70 per cent of spina bifida pregnancies are avoidable if women take folic acid (vitamin B9) correctly in the months leading up to pregnancy.
“It will be part of our new mission at Shine to ensure that more women get this message – and more importantly, act upon it.”