Receiving a diagnosis of cerebral palsy (CP) is life-changing for all involved, yet parents intuitively know something is different about their child long beforehand. It can be up to 18 months before a firm diagnosis is made by a medical professional, after the infant misses age-appropriate developmental milestones. It is only then that intervention begins.
Imagine the difference if a diagnostic tool could assess the increased likelihood of cerebral palsy in infants who are just weeks old? This diagnostic tool now exists, thanks to the late Professor Heinz Prechtl and Dr Christa Einspieler who developed the General Movements Assessment (GMA). The GMA uses analytic methodology to enable a trained assessor to interpret a video clip of an infant’s movements and assess their nervous system. The results indicate whether there is an increased likelihood of cerebral palsy. If so, early intervention can begin as soon as possible.
Where it all started
Clinician instinct was the surprising driving force behind this diagnostic tool, which has proved to be a game changer.
“We started systematic studies to observe the movements of infants with brain injuries to see if our gut instincts were correct,” remembers Dr Einspieler. “Amazingly, we found that a baby with a mild brain injury who won’t develop cerebral palsy would move normally, while a baby with a mild brain injury who will go on to develop cerebral palsy clearly moved abnormally.”
What resulted was the earliest incarnation of what would go on to become known as the GMA – a quick, simple, inexpensive and non-invasive methodology that could diagnose the increased likelihood of CP, and give power to the impact of early intervention.
The real groundswell started to take hold in 1997, when the first significant results were published in The Lancet, a respected medical journal. An overwhelming surge of interest soon followed amongst health practitioners and experts worldwide, leading Dr Einspieler and Professor Prechtl, and associates, to standardise the method through training courses and videos, which were shared globally. It was at this point that the innovative diagnostic tool became formally known as the General Movements Assessment.
Bringing it all together
The experience remains clear in Dr Einspieler’s mind to this day. “A momentum was created – every day was exciting for me,” recalls Dr Einspieler. “It still is. Even 30 years later, I’m still amazed at how easy it is to spot an at-risk diagnosis once you know where to look and what to expect at a certain age with a healthy baby.
“I recently overheard a conversation between two men in an airport lounge. They were discussing the preterm baby of a mutual friend, who was having terrible difficulties and had been in intensive care for a long time,” she remembers. “They were clearly worried about the baby and the family. But then one said: ‘But I heard recently that they checked his movements and he’s doing fine.’
“I got teary hearing such a personal story about someone using General Movements Assessment who I’ll never meet, knowing it had all started with my colleague Heinz. That was very special.”
Access for all
The General Movements Assessment has been such a universally applicable success that it is now being trialled in apps for use on smartphones.
To bring this vision to life, Dr Einspieler is co-managing an app for use in developing countries, where health practitioners in Central and East Asia, West Africa and South America will be able to record the movements of high-risk infants and use the app’s functionality to send this footage to experts for assessment. The app has received support and funding from the Bill and Melinda Gates Foundation.
The tool is particularly powerful for people living in developing countries, where stigma and superstition are often attached to disability. An early diagnosis will give each infant the most chance of appropriate intervention and support, as well as acceptance in his or her community.
The app is in the final phase of development with a pilot-study prototype in Sao Paulo, Brazil. The team are studying the feasibility and parental acceptance of the method in favelas where there is a vulnerable population of mothers exposed to chemical substance abuse.
At the same time, a complementary app is being developed in Australia for parents of high-risk infants. With this app, they too will be able to video their infant’s movements in a natural environment and forward the footage onto trained General Movements Assessment experts, who can provide diagnosis and action.
Both apps make General Movements Assessment available and accessible to those in need. It’s neither invasive nor costly and isn’t distressing for the infants, yet what results is a conclusive indicator of risk of CP at the earliest stage possible.
Early diagnosis provides the opportunity for early intervention and support for the infant and their family. For Dr Einspieler, the power of early intervention – and developing clear strategies for each stage of development – now needs to be brought to the fore, in order to improve results yet further.
To help drive this, four studies are underway to ascertain what sort of early intervention is available and how effective it is.
Dr Einspieler explains the rationale behind this. “We don’t fully understand the interventions we have for such an early age,” she explains. “Late pre-term, term, early post-term … these ages are so very early in life.”
“We’re so grateful to the parents who allow us to observe their babies so closely,” she reflects. “We rely on their cooperation and their open heart, especially for those babies who’ve had a difficult start to life.
“You have a bond with every baby you watch.”
Beyond this, Dr Einspieler’s ultimate goal is simple. “We want a consistent and universal use of General Movements Assessment. Not so it replaces the existing tools and diagnosis methodologies, but rather so it adds to and enhances the total picture of an infant, and the accuracy of their diagnosis.”
The work of Dr Einspieler and the late Professor Prechtl has made a significant difference in the lives of many infants and their families, and will continue to do so. A tool so simple – yet with the ability to make such an impact – will provide a head start in the lives of babies diagnosed with CP, who can access early intervention as soon as possible.