Cerebral Palsy Alliance
Window of Opportunity: experts explain the science of early screening
We were privileged to have some of the world's leading experts on cerebral palsy: Dr Cathy Morgan and Professor Iona Novak from Cerebral Palsy Alliance Research Institute, and Professor Rod Hunt from Murdoch Children's Research Institute, join us at the launch of the Window of Opportunity campaign.
They spoke to our CPActive community to explain the science behind early screening for cerebral palsy, the impact of early treatment for infants, and why Australia doesn't yet screen babies for CP.
"We want to start a [cerebral palsy] screening program for every baby in this country… irrespective of where they live, their postcode, whether they speak our English language or not," said Dr Morgan.
"What we're hoping to do with this program is put an opportunity into the hands of every parent."
In Australia, cerebral palsy is the most common physical disability in childhood. But while we screen babies for hundreds of conditions when they're born, CP isn't one of them.
The reason: Australia's policy hasn't kept up with the science.
"Until fairly recently we just didn't have the tests that allowed us to pick cerebral palsy with the accuracy that we can now detect it at a very early age," Professor Hunt explained.
"Twenty years ago, when I was training as a paediatrician, we were deliberately taught that we shouldn't make a diagnosis of cerebral palsy until children were two years old – because it was impossible to be certain about the diagnosis any earlier than that."
BaMS for Bubs: how it works
Our campaign is asking for a national program called BaMS for Bubs: Baby Movement Screening for every baby born in Australia.
There are a few different steps involved in detecting cerebral palsy in infants. BaMS for Bubs begins with a simple short video of a baby, which can be captured by their parents on a smartphone.
"There are three tests that, when used together, can predict cerebral palsy with 98% accuracy," Dr Morgan said.
"We can watch a video of a baby, just for a few minutes, three minutes, and people who are trained scorers whether… those spontaneous movements of a baby are typical or atypical."
The benefits of early intervention
We have the technology to detect cerebral palsy at a very early age. However, some people still question the benefit of doing so.
Professor Novak had three answers for them.
"Early diagnosis is the gateway to early intervention. We think of three important things when it comes to early intervention," she said.
"Number one: neuroplasticity. To help the child to learn the skills that they want. So, to smile at their mum and dad, to give them a hug, to sit up.
"We think about parent support because it's a really stressful time and we know that parents that are supported have better wellbeing in the long run.
"The third thing is there are complications that can happen with cerebral palsy, so by starting intervention early we can prevent many of those complications."
The science is in: Australia needs BaMS for Bubs to open the window of opportunity for every baby, and every family. With your support, we can make it a reality.
If you haven't already, sign the petition to the Federal Government here!
If you have experience with receiving a CP diagnosis and treatment, either your own or a family members, you can share your story with CPActive here.
Check out the highlight video from the expert panel below!
Resilience, community and representation – key lessons from CPA's Paralympic Ticker Tape Parade
The amazing performance of Australian athletes with cerebral palsy at the Tokyo 2020 Paralympics has inspired a new generation of young children with CP and similar disabilities. To celebrate the return of our Aussie Paralympians, CPA recently held a virtual Paralympic Ticker Tape Parade, pairing aspiring athletes with some of our most successful Paralympians living with CP for an uplifting evening of community and conversation.
Kicking off the event were Christopher Pyne and Ben Atkins, represent Australia's Para-football team, the Pararoos. They spoke to up-and-coming CPA athlete Matty Engesser, discussing the special bond that athletes with cerebral palsy have, and the importance of building and connecting our CP community.
"You need to find that special thing for a team to succeed, whether it be in football or athletics. With [the Pararoos], the drive, the determination, the spark was already there, it was just a matter of moulding and developing it. When we come together as Para-athletes we've all been through the same sorts of things, we've all faced challenges throughout our lives that able-bodied people don't have to face, and that gives us a special connection"
– Chris Pyne
"We're in such a fortunate position as athletes with CP that we have direct contact with our mentors, our inspirations, the people we look up to. If you can take anything away from this call – reach out to the current Paralympians. We were all once a 9, 10 or 11-year-old aspiring to get to the Paralympians or that World Championship. We've got the team spirit built in, it's just taking advantage of that, and getting that advice and helping hand"
– Ben Atkins
Resilience and determination
Lakeisha Patterson had to overcome a difficult 18 months of injury, illness and lockdowns to make it to the starting line at the Tokyo Paralympics. She went on to win gold in the women's 400m freestyle. She said that resilience was all about finding the "creative solution" to a problem:
"We've all got to overcome obstacles and it can be difficult to see past them at times and focus on the road ahead, but I think I've definitely learned [that] there's always another way around situation… It's just about giving things ago and finding that creative solution.
I believe when you are faced with challenges, you have three choices: you can either let it destroy you, let it define you or let it strengthen you, and I think I've definitely let all of these circumstances in my life strengthen me. They pushed me to become this better athlete so it'd be able to be able to get to Tokyo"
– Lucky Patterson
Matt Levy, a five-time Paralympian, also shared the importance of staying focused, in conversation with young CPA athlete Aaryan Shah. He spoke about how making the most of the experience.
"Getting ready for an event I really try and remember why I'm there in the first place. There can be self-doubt, you can second-guess yourself, I try and remember all the training and hard work I've done to get to that point. At the end of the day, racing is the most fun part of what we do and it's really less than five minutes compared to years and years of training"
– Matt Levy
Setting goals and achieving success
Evan O'Hanlon is one of Australia's most successful Paralympic sprinters, having won five gold medals. In Tokyo he won bronze in the hotly-contested T38 100m event at his fifth games, and he spoke with up-and-coming 14-year old track star Sybella Warton about the importance of setting goals:
"My process for going coming up with goals over the last probably 15-20 years has been to look around at what hasn't been done and try and go and achieve that. So when I started in athletics, I said to myself, 'no one's run under 11 seconds as an athlete with cerebral palsy for the 100 metres – I want to go do that.'
So I set my mind on it and I started breaking up that goal into tiny little amounts that were more achievable – those tiny steps turned out to be 0.36 of a second, which I need to improve by, divided by 365 days and [broken down to] 0.001 of a second – and that meant that every day when I woke up I just needed to improve by that little amount and I'd be able to get my gold."
– Evan O'Hanlon
Amanda Reid, who became the first Indigenous woman to win a cycling gold medal at Paralympics after triumphing in world record time in the 500m time trial C1-3, also spoke about the importance of breaking goals down into smaller, achievable steps. Amanda, who first represented Australia in the pool at the 2012 Paralympics before switching to cycling, said her strategy was to set herself short-term, medium and longer goals – such as winning a gold medal or breaking a world record
Representation and the gift of being different
Making a special appearance to round off the evening was Katrina Webb-Denis, who won gold medals at three consecutive Paralympics and is one of Australia's best-loved athletes with CP. Now retired, Katrina was part of Channel Seven's commentary team in Tokyo. She shared how much it meant to her that Paralympics was now getting the recognition it deserves, and also how CP has been her "biggest gift":
"I just had the most incredible gift of being in Tokyo, where I interviewed Lucky and Matt poolside on behalf of Channel 7 and they were one of my favourite moments ever. To be a part of the media on the other side was extraordinary, because I know when I was an athlete I would have dreamed to have channel 7 waiting there and they never were. To be able to represent that as a Paralympian to be there in those extraordinary moments means so much to me.
"Cerebral palsy has been my biggest gift. My message is that this difference has been the thing that has powered me in so many different ways. It's taught me to be strong, resilient, a problem-solver, it's taught me how to have empathy and love for other difference… it's great to be different."
– Katrina Webb-Denis, OAM
Amanda Reid, Ben Atkins, Christopher Pyne, Evan O'Hanlon, Katrina Webb-Denis, Lucky Patterson, Matt Levy, Paralympics, Tokyo 2020
Window of Opportunity campaign: stories from the launch
Cerebral palsy is the most common physical disability in childhood, and behind every diagnosis is a story.
Right now in Australia, there's no standard program for screening babies for CP. That's why the Window of Opportunity campaign exists: to advocate for a national Baby Movement Screening program for every child born, or BaMS for Bubs.
At the launch event the CPActive community heard from four parents about their child's journey to diagnosis and treatment. These are their stories.
Kylie's daughter Anika had a stroke shortly after she was born. At the time, it was devastating for her family, but Kylie says it was also lucky in a way, because it meant her health and development was closely scrutinised, and she received her cerebral palsy screening at only a few days old.
By 6 weeks, Anika was receiving intensive occupational and physical therapy.
"We know through having done our own research how incredibly important neuroplasticity is in babies and children, so I really do think that that early start for her has made a world of difference," Kylie says.
"We went from having a little girl who had no idea she had a right-hand side of her body – we would have to pick up her arm and shake it – to now a little girl who has worked very hard over the last four and a half years, that she is able to do just about everything that a little girl should be doing at that age.
"That early intervention, as far as I'm concerned, has set her up for a life that she should have.
"I can't believe there are so many kids who slip through the gaps because they don't get that opportunity."
Eden knew early on that her son Kingston wasn't like other children. For months she was told that all children do things in their own time, that there was nothing to worry about.
But when Kingston's first birthday arrived he was not hitting the same milestones other babies his age were, like sitting up independently, and Eden's anxiety reached a fever pitch.
Finally, as Kingston was receiving his one-year vaccinations, the paediatrician remarked casually: "I think he's got CP."
"It hit me like a ton of bricks," says Eden.
"I felt anger and disbelief. I just didn't understand it. It wasn't the world that I had ever thought that he would be in. I actually had no knowledge of CP at that time and everything that popped up [in my research] was very, very scary."
In the months that followed, Kingston finally received his CP screening and assessment.
"Absolutely every baby in Australia born needs to have early screening… It's so important for our future because that would have saved me. It would have given me peace of mind, at least knowing what path I was taking from 6 months onwards, not waiting, not every day pushing him… hoping that he would walk at 10 or 11 months and it just never happening."
Eden has this message for the Federal Government:
"It is our duty of care to help create a better future for our children. We need to use science and health education to prevent any misleading diagnosis."
Marelle
Marelle's daughter, Katie, is 44 now, but when she was born early screening wasn't heard of.
Like many parents, Marelle knew Katie wasn't typically developing, but struggled to have her concerns taken seriously by medical professionals.
"We were told all along the way that she was a slow starter, that we just had to wait and see," Marelle says now.
"I spent 9 months searching for an answer to what I believed to be a problem with my baby. I had a gut feeling from day one that there was something not quite right."
After taking Katie to see two more paediatricians, several GPs and a chiropractor, they were finally referred to a cerebral palsy specialist, where Katie was diagnosed almost immediately.
Katie is now living happily in specialist accommodation and close to her family. But forty years later Marelle still feels the pain of her family's struggle to get Katie diagnosed.
"Perhaps if there was such a thing as an early screening program life could have been different for Katie," she says.
"That window of opportunity that we talk about was lost for her. There was nothing in that 9 months for her. Had somebody taken up her cause and sorted out on day one, when a mother says there's something wrong with my baby, there could have been a different outcome."
Grace hardly had a heartbeat at 35 weeks, meaning that even after she was born her mother Anne was always on the lookout for health complications.
"I really knew from the night Grace was born that it would be a different journey… I was always looking for things, milestones that Grace wasn't hitting," Anne says.
After "a diagnostic odyssey" they finally arrived at Cerebral Palsy Alliance, when Grace was 18 months old.
"We tried to make up for lost ground with really intensive therapy," says Anne. "It wasn't as early as what it should be by a long shot, but I was searching for a measured approach for helping Grace develop.
"My wish is that families don't have to go on those sorts of journeys because… we really did miss those early years. Grace has done extraordinarily well… but I really feel that we lost those critical early days and weeks and months.
"When we were on our journey there was this concept of protecting the parents, and I really don't understand that concept. I think that the earlier parents know and can be supported in the early stages of this journey… is the best start you could hope for.
"My message is the earlier [CP is diagnosed] the better… I wonder where we might have been if we could have put our energies into supporting Grace and really understanding Grace's needs much earlier than what we were able to."
We are so grateful to Anne, Eden, Marelle and Kylie for courageously sharing their stories and driving home why the Window of Opportunity campaign is so important for us.
If you have a story of your own, please share it with us at our Share Your Story page.
19 August: Window of Opportunity campaign launch | A CPActive Online Event
Every baby born with cerebral palsy has a window of opportunity that makes a lifetime of difference. But in Australia, we're missing it.
Every baby born is tested for hundreds of health conditions, but not for cerebral palsy. It's the most common physical disability in childhood, yet across Australia the approach to diagnosis is just 'wait and see'.
Treating cerebral palsy in those first few months of life has a massive impact on that child's wellbeing for the rest of their life. Every baby deserves that chance, and every parent deserves to know how to help their child thrive.
Register now for the launch of our new Window of Opportunity campaign at 7pm on Thursday 19th August. We're calling on the Federal government to provide universal cerebral palsy screening for every baby born in Australia.
We'll share stories and discuss how we can work together to create lasting change
We'll keep you updated about the campaign. Click here to read our privacy policy.
Wrap-up: Activism 101 Skill Share
Our CPActive event 'Activism 101' was a smaller skill share session where three prominent disability activists dropped in to share their wisdom with the CPActive community.
Grassroots campaigner Jerusha Mather, Jean Cotchin from the Every Australian Counts campaign, and Elly Desmarchelier from Women With Disabilities Australia joined us to discuss how they found their passion for activism, their experiences dealing with politicians and decision-makers, why the world needs to hear more voices with lived experience of disability.
They also shared some of their top tips on activism for everyone new to campaigning. Here are some of their words of advice:
Choose your issue: "If I spent all of my activist energy on everything I cared about, I would be spending 2 seconds on every issue and completely burn myself out. So, you have to be very specific." – Jean
Find out who's active: "You just really need to spend some time talking to people who know this issue. What have they found, what have they heard – and often there's not one answer… there's multiple decision-makers along the way, and it's who influences those decision-makers that you might need to get to… we're working on the Senate crossbench because the PM needs the crossbench to pass anything." – Elly
Put your hand up: "Don't be afraid to jump in and put your hand up. You're entitled to participate in this democracy. Even though it's intimidating when it's new, you're totally entitled to it." – Jean
Know who you're talking to: "I think it's really important to find your target audience and write to them and ask them to support your cause… have discussions about your cause and how to go about changing the systems." – Jerusha
Use your tools (MP meetings, online petitions, news): "Get as many media outlets to write about your cause [as you can], have meetings with Members of Parliament to talk about your issue." – Jerusha
Above all, all three believed in the power of people with disability telling their stories. These stories, your stories, will be the foundation of CPActive's campaign for change. Whether it's in education, healthcare, or the workplace, we believe Australia should be accessible and inclusive for everyone.
That's why we want to shine a light on the experiences of people with disability and bring your stories to the world. Please, share your story with us on the CPActive website.
CPActive