“If I’d had a stroke, I wouldn’t be happy waiting two years for a diagnosis and treatment, by which time the damage would have become permanent”, says Professor Nadia Badawi, Macquarie Group Foundation Chair of cerebral palsy and Head of Research with Cerebral Palsy Alliance.
“Well that’s what we accept with children with cerebral palsy when early intervention in infancy could re-shape their brains, for example using what’s called a motor learning approach, where we train the brain to learn new movements. In many cases we’ve managed to bring down the age at diagnosis from 19 months to three months using what’s called General Movements Assessment in Sydney Neonatal Intensive Care Units”,
…explains Cathy Morgan Research Fellow at Cerebral Palsy Alliance. “And this has allowed us to research early interventions such as the motor learning approach.”
“It is appalling that while cerebral palsy costs $US40 billion worldwide each year, less than 0.025% or $US10 million dollars was spent worldwide last year on research to find a cure”, said Neil Balnaves, whose Foundation is funding the Meeting in Vienna. “That’s why this Meeting, where the latest worldwide research on cerebral palsy will be presented, is so important.
“At the Vienna meeting we focussed on early returns for parents and children by accelerating research discoveries through bringing together 45 of the world’s best cerebral palsy researchers in Vienna in early July – a quarter of whom are from Australia,” explains Neil Balnaves.
For the first time international clinical guidelines on early intervention and early diagnosis came from this meeting and these guidelines were presented by convenor of the Vienna Meeting, Australian Associate Professor Iona Novak (Head of Research at the Cerebral Palsy Alliance ) at the European meeting –European Academy of Childhood Disability in Europe (Vienna 3-5th July).
“My son has already benefited from Australian research,” says Tea Boyce mother of 2 year old Genesis. “It used to take months to be sure your child had cerebral palsy but he had what’s called General Movements Assessment early in life, which allowed the specialists to give him treatments exactly focused on his needs. Genesis’ improvement has been fantastic.”
Genesis was born at just 24 weeks gestation weighing only 720 grams. Not long after his birth he suffered haemorrhages on both sides of his brain and it was feared he wouldn’t survive. Genesis spent a total of 15 weeks in hospital and was eventually discharged home still on oxygen. Tea and Paul were told that Genesis was likely to have severe neurodevelopmental problems. At about 3 months of age the General Movements Assessment revealed that Genesis was in the high risk group for cerebral palsy and he was referred to a CP Alliance Research Institute early intervention study looking at training movement skills in young infants.
Cerebral palsy was confirmed at 8 months however Genesis progressed well, exceeding expectations and at 12 months surprised his doctors at Growth and Development Clinic . Genesis is now almost 18 months and is crawling and pulling up to stand . Tea said he is now standing on his own for a couple of seconds which is fantastic. “I was so scared when I found out my child had cerebral palsy, and I would have been a ‘lost mother’ without the Cerebral Palsy Alliance – they put me on the right track for Genesis’ progress,” Tea Boyce said.
“We’ve also been trialling a technique adapted from adults with stroke to young infants called Action Observation Training which uses mimicry to get the baby to use their affected arm,” says Prof Roslyn Boyd of the University of Queensland. “It is designed to train the injured brain as the infant starts to learn