A simple dietary supplement taken during pregnancy could prevent the brain defect resulting from hydrocephalus, revolutionary research suggests.
Now, parents of children suffering from the condition in the United States have stumped up the money to pay for the next stage of their investigations.
The money will fund a lab at the University of Central Florida headed by the British researchers, who hope their work will lead to a significant reduction in the risk of hydrocephalus and treat, perhaps even cure, those cases that do occur.
"Fetal-onset hydrocephalus results in a blockage in brain development which everyone has always thought was brain damage due to fluid accumulation," said Dr Jaleel Miyan, the University of Manchester scientist leading the research.
"There is currently no unequivocal prenatal diagnosis test or satisfactory treatment other than surgical diversion of the fluid through a tube, known as a shunt, from the brain to the abdomen or heart. Shunts are permanent and prone to infection and blockage so that patients may require several operations during their lifetime.
"This procedure is based on the established clinical view that this fluid is nothing more than a mechanical support system within the skull with little, if any, physiological properties and that hydrocephalus is simply a build up of excess cerebrospinal fluid in the brain.
"But our studies have shown that the condition may in fact cause a change in the composition of the fluid and that it is this chemical change that prevents normal cell division resulting in arrested brain development.
"We have also been excited by the results of tests that have shown it may be possible to 'unlock' the potential brain in fetuses with hydrocephalus using a simple dietary supplement during pregnancy."
That supplement is currently under wraps as studies are completed to test its potential to cut the rates of hydrocephalus in the same way folic acid has cut the incidence of spina bifida. In the UK and US, hydrocephalus affects one child in every 500 live births; this rises to one in every 100 births in the developing world.
The Florida laboratory is underwritten by an enthusiastic group of parents who have set up a foundation to fund the research work.
Like Dr Miyan, they believe the condition can be better treated without the need for surgery and realise the best hope for this lies with the British scientists collaborating with their local neurosurgeon Dr Jogi Pattisapu.
Indeed, the team has been hailed the 'flagship research group' by the President of the Society for Research in Hydrocephalus and Spina Bifida, Ms Carole Sobkowiak.
Working with Dr Miyan will be Dr Jane Owen-Lynch, from the University of Lancaster, Professor Carys Bannister, retired neurosurgeon and visiting Professor in Manchester's Faculty of Life Sciences and Miss Sarah Cains an MRC funded postgraduate student working on this project in Manchester.
"The collaboration between the Manchester and Lancaster groups has produced a significant change in opinion among clinical practitioners on the role of the fluid within the developing brain," said Dr Miyan.
"The outdated belief about the role of cerebrospinal fluid, together with the fact that the condition has many possible causes, has meant research funding has been poor, both here in the UK and globally.
"We hope that the potential for rapid progress provided by the parent-led initiative in Florida will stimulate further significant funding here in the UK."
Dr Miyan and the team are due to fly out to Florida to begin their sabbatical posting in December.
For further information contact:
Faculty of Life Sciences
The University of Manchester
Tel: +44 (0)161 275 8383
Mob: +44 (0)7717 881 563