Cerebral conversations episode 1 Early days in Neonatology

Episode 1 | Early Days | Nadia Badawi & Tracey Spicer on Neonatology

Join Professor Nadia Badawi and Tracey Spicer as they discuss the often challenging, but always inspiring, world of newborn intensive care. Hear how Nadia thinks differently about what is possible for babies born with cerebral palsy. Tracey asks how our understanding of CP has changed over the years and critically, what does that mean for the future? Could a global pandemic really offer silver linings to those living with disability? And what’s changed to make the idea of a cure for CP no longer seem so fantastical?

Internationally recognised neonatologist and CPA’s Chair of Cerebral Palsy, Professor Nadia Badawi is renowned for her research into neonatal intensive care outcomes. At CPA’s Research Foundation, Nadia and the team are investigating ways to prevent, treat and ultimately, cure cerebral palsy. Learn more about the team’s work at cerebralpalsy.org.au/research/

Author, journalist and broadcaster, Tracey Spicer is a passionate advocate for the causes that matter most. For her decades of work for social welfare and charitable groups (including as an ambassador of the Royal Hospital for Women’s newborn care unit), Tracey was awarded the Order of Australia in 2018. Learn more at traceyspicer.com.au 

Listen to Episode 1 now, or read the transcript below.

Find out more about the incredible work by CPA’s research team

Sign the Window of Opportunity petition for early diagnosis national screening of CP

Find out about Dr Hayley Smithers-Sheedy and her team’s work on preventing CMV in pregnancy

Find out about Dr Cathy Morgan and her team’s work on early detection of CP

Episode Transcript 

Ben McAlary: Hello, my name is Ben McAlary.

Andy McLean: And I’m Andy McLean. Hello and welcome to the first ever episode of Cerebral Conversations.

Ben McAlary: What a cracker of an episode we have to kickstart this podcast, Andy.

Andy McLean: Yeah, that’s right. And here’s a couple of big numbers to start us off. 15 percent of the population globally lives with a disability.

Ben McAlary: Yeah, when I first heard that statistic, I was floored. It’s something like 1.6 billion people globally.

Andy McLean: That’s absolutely true. And that’s why this podcast is a great listen for pretty much everyone. In each and every episode, there’ll be a conversation that might make you laugh. It might make you cry. It might get you fired up. Or it might do all three of those things.

Ben McAlary: Now, full disclosure and to be completely transparent, neither Andy or myself have a disability, but that’s kind of the point. We’re here to listen and learn. We’re here to debunk some myths and to ask questions that many people are too afraid to ask. And for this, the first episode, we’ve got a treat for our listeners. We share a conversation between two very special people who are both Order of Australia recipients.

Andy McLean: Yep, we’ve got Walkley Award winning journalist and broadcaster Tracey Spicer having a chat with the truly remarkable Professor Nadia Badawi, who is the Macquarie Group Foundation Professor and Chair of Cerebral Palsy at Cerebral Palsy Alliance.

Ben McAlary: Yeah, you’ll hear all about early intervention, its importance, research and how it’s developed over the past decade or so. And in the following two episodes, you’ll hear about the very special story of a family that has really benefited from early intervention and specifically Nadia’s work in neonatal care.

Andy McLean: Yeah, and believe me, you will want to stick around for the next two episodes after this one because the story is just mind blowing. But that is enough spoilers for now. So let’s jump into our conversation today with Tracey and Nadia.

Tracey Spicer: Professor Nadia Badawi, as we just heard, you are extraordinary. You’re a world renowned neonatologist, you’re a thought leader in the area of cerebral palsy. As part of that, you’ve worked closely with critically ill babies and their families for many, many decades now. Our son was born extremely prematurely and with low birth weight. He ended up in a neonatal intensive care unit for two weeks. But for those who are listening who’ve never been in a NIC unit, what’s it like?

Prof Nadia Badawi: It is such a common phenomenon, because one in every 10 Australian babies is going to spend time in either a newborn intensive care unit or a special care nursery, so that’s a lot of babies who are cared for in special units. So when I started, it was a very noisy, hectic, stressful environment. There were all these rules and regulations. People couldn’t visit, parents couldn’t hold their babies and it was all very sort of scary. It was like watching a TV program. So when I started in newborn intensive care, it was a relatively new field and we were often shoved into the back of an old maternity hospital. I remember one of the first neonatal units I worked in was in Dublin and it was in a very famous hospital. But you literally had to climb up into what was the back attic of the hospital. And then as babies survived more and more, the atmosphere has changed. But I would say that for newborn intensive care, for the for the families, it’s an incredibly stressful time. No one expects to end up giving their little precious newborn baby to a bunch of strangers, often with little warning and then say, I don’t know you, but I trust you to look after my baby taken away to this place where there are all these little babies in incubators, all around and on ventilators. So it’s a very stressful situation. Luckily, in Australia, newborn intensive care is getting the results, just getting better and better every day. But, you know, parents come to us and they will say, Oh my goodness, I didn’t even know you guys existed.

Tracey Spicer: You speak about that with such beautiful empathy. Nadia, I think anyone who works in a neonatal intensive care unit is nothing short of a sight. And one of the points you touched on really resonates. That is how the atmosphere has changed over those decades. I recently read an article you co-authored which delved into the historical notion that cerebral palsy, for example, was caused by problems in labour. Why was this condition so misunderstood for so long?

Prof Nadia Badawi: It’s a condition that a lot of people don’t know about. And yet it’s a very important condition, and there was a sense of hopelessness around it. People were born with cerebral palsy and it was assumed that we couldn’t do anything to prevent it or to make things better or to treat people. And a lot of science around it. So I always think, why did we blame labour? It’s because it’s like when you buy something beautiful from overseas and it comes from this beautiful shop. It goes across the ocean. It gets packaged in DHL. Then it’s delivered to your door. Someone drops it at the doorstep and it’s no longer… It’s changed. And of course, we all blame the delivery person. So people blamed Labor because it’s what they saw. That’s the period when most babies would come to the attention of… of health professionals. So there was this idea that labour was the time when cerebral palsy was caused. So we have now one of the highest rates of caesarean sections around. And the main aim of having a high caesarean section rates was thought to prevent cerebral palsy. But actually, we realised that most cerebral palsy does not occur during labour. They’re either born prematurely or something has happened during the pregnancy. Mostly, we know from our research, because we have the amazing Australian cerebral palsy register, that a lot of cerebral palsy is related to genetic changes or to infections like the same virus. So we’ve.. it’s having a register of people who live with cerebral palsy has made us realise that the origins of cerebral palsy are not what we thought they were. So once you know why something has happened, then you can do something about.

Tracey Spicer: You’ve been a terrific mentor. And as we know, nursing is a very female dominated profession. You’ve encouraged them to go out and study and go into leadership roles rather than purely the focus being on the traditionally male dominated areas of medicine and science, for example. I was very interested to read this International Women’s Day. You said women should choose to challenge the statement: ” It can’t be done.” And I thought, Gosh, that’s really defined your whole career. What are some examples of times when people said to you, it can’t be done and you found a way of doing it?

Prof Nadia Badawi: I think what I’ve been so fortunate, Tracey, I think every job I started, there were people who wanted to support me. I love people. I love community. I love the team. So I was always lucky to find a couple of people who took me on and said, What is it you want to achieve? We can help you achieve that, so I’ve been very fortunate that people have been extremely generous all along the way. And when what my mother, when I was born, my mother had bovine tuberculosis of the lymph glands and because she used to drink fresh milk and at the time, milk wasn’t pasteurized. This was in Dublin and I was put away from her in actually a special care nursery for four months. So I think it’s funny. I was so little, but I think those nurses imprinted on me. So it’s about working with people. I cannot achieve much on my own. That’s just a fact. But with a good team around me focused on working together to get the best outcomes. That’s where I think I get that energy. They give me strength. Hopefully, I give them strength and courage to make a difference. And we work together. So when I started newborn intensive care, a lot of babies died and that was awful. And it was a very traumatic time. I remember one week and four babies died, and I actually came home and said to my husband, I’m not sure I can do this. This is harrowing, and it’s really just soul destroying. So we got together with parents and nurses, and we said, well, what can we do to get better results? And that’s where the value of research comes in. You start looking at other units that might have better results overseas or even in your own country. And we worked very hard with families to get the survival up to extraordinary levels. The survival out of newborn intensive care in Australia is now one of the best in the world, and survival for any baby born in Australia is actually very, very high. We have one of the lowest perinatal mortality rates in the world, so we then saw what we could do if we harness the collective sort of energy to do better. Next thing was working with CP Alliance and with other like-minded families and professionals to bring the rate of cerebral palsy down, so it’s never just up to one person.

Tracey Spicer: And yet I can’t think of a more difficult environment to work in than one where there are babies dying every day. How do you cope emotionally with that? What are your strategies for resilience?

Prof Nadia Badawi: The strategies are to not shy away from it. But to sit down with my colleagues and talk about admit openly how hard this is because I think the day that a health professional doesn’t get touched, they’re probably overdue to leave because if this doesn’t matter. Why would we do it? This matters. And I’m also aware that even if I or my colleagues don’t see a baby dying, it’s happening. So let’s be part of fixing it. You know, my kids told me I’m a fixer by nature, and that’s probably true. And I want to be part of a solution with my colleagues and families. So the rewards are huge. We’ve now seen survival go way over 97 percent. That’s incredible. And that’s through people working together. So I refuse to accept that we can’t do better and better and get better results because this is a reality. We know that this happens. And I don’t want to hide from it. We want to help fix it.

Tracey Spicer: That’s very wise. And your work has seen a combination of research and technology improve outcomes in Australia and around the world, particularly for children with cerebral palsy. Now I’ve read recently where using a child’s own umbilical cord blood to improve brain connectivity. Could you take us through how that works?

Prof Nadia Badawi: So a few years ago, some of my colleagues to the survey and asked parents, people with cerebral palsy, researchers and scientists about what they wanted from research, and that is very important. We asked families and we asked people with cerebral palsy because too much research in the past has focused on what health professionals and scientists wanted. And they did important things, don’t get me wrong, because we often agree with families and with people with conditions, but they were very targeted. Parents said they want prevention of cerebral palsy for other families. That’s how generous they are. They also want us to look for the best treatments. And they want us to look for a cure. And at the beginning, I remember being shocked by the idea of a cure for cerebral palsy because we were taught that this was not preventable and really we couldn’t change the trajectory of people’s life much once they had cerebral palsy. And the idea of a cure just seemed like something fantastical. So we’ve really taken that on board, and we know that hundreds, probably thousands of Australian families are taking their children overseas at great expense and a great difficulty to get unproven, sometimes dangerous treatments. And that’s why we want to do ethical, safe research in Australia. And one of them is around stem cells. Umbilical stem cells are being given in countries overseas, so in the U.S., at Duke, they’re using it to treat children with cerebral palsy. But that’s very expensive and it’s hard to get to the U.S. we just have to look at the effect of this pandemic. So we think that a country that has one of the best health systems that won’t charge parents anything is the best environment to do this research. That’s only one form of stem cells. There are other forms of stem cells that parents want us to do research on. They want us to see if the stem cells will prevent brain damage in babies who have had, maybe, you know, a lack of oxygen or low blood pressure around that time of birth, or they were extremely preterm and had bleeding in the brain, which pre-term babies can have. So it’s looking at it from prevention, but also looking to see this could… could this be a treatment that helps improve the quality of life for people who live with cerebral palsy? So it’s early days yet, but we have collaborated with other groups, and the government has invested money into stem cell research. Not enough. But we need to do more. And I think that as we look for best cures or best treatments, we’ll find the answer.

Tracey Spicer: Gee, good on you for taking such a person centric and family centric approach, listening to the people who are affected, asking what they want and then moving forward with that. You mentioned government funding just there. Obviously, money’s important, but do attitudes play a big part as well. It seems to me when society focuses its attention on something it wants change, things move fairly quickly and governments listen. Is there still, to a degree, a discriminatory and bigoted attitude towards people with a disability.

Prof Nadia Badawi: I mean, I find it shocking working in children’s health, where if you were just looking honestly from an investment point of view, you’d be investing in the early years, but so much of our health dollars goes towards the end of people’s lives. So we’re really not investing a lot in children’s health. You look at how much is spent on adults health. Compare it to children’s. We’re like five to 10 percent of the health budget for treatments that will affect a life long span. Children’s research gets very little funding. And yet again, that’s the whole of society. And every time I look, every adult I know was a child once. So it’s crazy not to invest at that early time, but families who have a baby who’s very sick are often overwhelmed. They don’t have time to lobby for their children. They don’t have time to go out looking for what’s the best research. And also, you know, it’s just unproven because we’re really starting out at the early beginning of cerebral palsy research. I mean it’s only 20 years ago that we realised that most cerebral palsy was not caused by events during labour. It’s only about 15 years ago that we launched our Research Institute into cerebral palsy and started the Australian Cerebral Palsy Register. So we now have a real idea of what people who live with cerebral palsy are like in Australia who they are, what the severity is, what might have caused it. So these are all very recent events. We’re just at the beginning. And yet, even though we’ve only been 15 years in cerebral palsy research, we’ve seen a significant drop, 30 percent drop, in the rate of cerebral palsy in Australia. Now one of the lowest rates in the world. And what makes me even more excited is that I see that the children who have cerebral palsy have a milder form, so they’re more likely to walk, more likely to talk, less likely to have intellectual disability and less likely to have epilepsy. So their quality of life is probably going to be much better, and that gives us hope and gives us an inkling of what might work in the future to make things even better.

Tracey Spicer: It really is remarkable what’s changed in the past 20 years, and there seems to be momentum around this area of medicine. How concerned are you that the pandemic will stop that momentum in its tracks? We’re seeing so many general government dollars, as well as specific health dollars going to different areas because of coronavirus, which we know we’ll be living with for goodness knows how many decades to come.

Prof Nadia Badawi: I am worried about that because I think it’s shifted everyone’s attention away from disability and other conditions. But remarkably, the community has stayed behind us, so even during the last year of the pandemic, people have continued to donate. To the cause, because I think people see this as a success story that they want to be a part of. And even though we’re not, it’s sort of not at the forefront, perhaps the way we were getting becoming in the last few years. People are still saying that this matters. They want to help protect babies and get better outcomes for them. So I’m very heartened by that that the community is still participating. You know, last year in September, our biggest fundraiser for cerebral palsy, it still did extremely well. And that was so reassuring to me that people are not forgetting what an important cause this is and that it could touch anybody. Anybody can have a family member, and often does, who has a disability. The other thing is, what I suppose I’m a bit pleased and that we have finally allowed people to work from home. This is one of those things in the past we told people with disabilities, if you don’t front up to the office, you know, we can’t give you a job. But funny, this pandemic has meant that able bodied people are able to work from home. So I’m thinking that this maybe will change that landscape, that somebody in a wheelchair who finds it difficult to come and go from an office will actually have more employment chances. So I’m still optimistic.

Tracey Spicer: It’s a really great point, and I wonder if this time with flexibility of work, more people being able to work from home will lead to more true diversity in leadership positions, not only more women, but more people with disabilities, more people of colour. Do you think there could be a huge silver lining in this aspect?

Prof Nadia Badawi: Yes, I do. And I think the pandemic has made us realise that the world is one big melting pot. These boundaries, these barriers, they’re artificial. So when you look at health professionals in any Australian hospital, you will see it’s like the United Nations. You people from all around the world and that enriches what we do because they reflect the population that we serve, Australians now come from all around the world. They speak multiple languages and getting different viewpoints. It’s only going to enrich the outcomes. And I’m sure that some of our success in recent years has been reaching out into the world and getting gifted people from everywhere, who can help the Australian population. So newborn intensive care, you know, when I reflect back on it, when I started, there was a very high mortality rate. It was a very high rate of disability. We spoke about this epidemic of cerebral palsy that was happening among babies being discharged from newborn intensive care. But as we’ve changed our health professionals, we’ve listened more to the public charities, not for profits. Governments have got involved. That’s where we’re seeing better and better results because you get different viewpoints. People challenge the status quo. And you know, I think this pandemic may come with some very exciting options. So one of the big viruses that causes cerebral palsy, we know it’s a virus called cytomegalovirus CMV, and it’s responsible probably for about five to ten percent of cerebral palsy as a minimum. People used to say we could not get a vaccine for it because of the type of virus it was. Now we’ve got COVID vaccines using new technology. So I think that some of the treatments and preventative strategies we’ve got for COVID ironically may actually help with disability. The other thing is, I now speak to people about newborn intensive care and ventilation. They know what it means because they’ve seen intensive care. They’ve seen ventilators on their screens, and it’s easy for them to extrapolate what that could look like for a baby. So I think that there are some definite silver linings to this pandemic around the area of disability.

Prof Nadia Badawi: The public were outraged that so many people with disabilities and in aged care were not vaccinated, and they’ve got behind that. There’s a lot of agitation to protect people with a disability and older people. So I think the community are not going to find that hard to say well we need to protect, help, and include people with cerebral palsy.

Tracey Spicer: You’re right, when we look at the lessons of history, you know, because after the Spanish flu, the pandemic around 1918, we saw some huge advances socially, notably women in the United States winning the vote because all of a sudden people saw women on the front line as nurses saving lives in the pandemic. Also, it was around the time of the First World War. So we never know what’s going to happen in the future because of the pandemic that might actually be positive rather than negative.

Prof Nadia Badawi: Because don’t you think Tracy, too, that the public understand research? I’ve started hearing people talk to me about randomized controlled trials. I’m thinking, how do you even hear that? And it’s because of the work around Covid is starting to understand what’s proven treatment, what isn’t, they’re starting to understand, looking at cohort studies. So the language that we use for research people are now identifying with, and understanding, so I think that , it’s another thing I think it’s really going to make a big difference.

Tracey Spicer: Yeah, there are swings and roundabouts on that, aren’t there, because there’s a lot of people who think that instant experts. But equally, it’s given them an interest in and an understanding of that intersection of science, research and technology. And that’s got to be a good thing. The more storytelling and communication that comes out around that, the greater the understanding overall. I’m really fascinated to hear Nadia what you see coming up around changes in technology for children and adults with cerebral palsy. You mentioned earlier some changes you’d seen in neonatal intensive care units. Can you detail some of those so we can reflect on how far we’ve come there?

Prof Nadia Badawi: So in the past, babies would be in newborn intensive care and parents would only visit at certain times, they weren’t allowed to touch or hold their babies. It was very noisy. The lights were on all the time. Radios were often blasting. The babies weren’t cocooned. They’d be lying there in their incubators, thrashing their arms and legs. And then slowly we realised that newborn intensive care was actually a neurotoxic and cold environment. That we weren’t safeguarding these babies brains and development. So there was started a movement in the states that was called NIDCAP that was newborn, individualized developmental care. And we took it on. The idea was that we would not be continuously poking and prodding babies. Sometimes we would realise that babies had been poked and prodded 200 and something times a day. And that is just an awful experience to go through. So we started trying to minimise the times that we did things to babies, leave them alone when they were asleep. Try and make it less horrible environment. So we now have what we call skin to skin care. First of all, parents can visit anytime, day and night. They are part of the team. I shouldn’t even use the word visit because they are part of the team looking after the baby. They can hold their baby from the very beginning. It doesn’t matter what sort of equipment the baby is on. You walk around and you’ll see that these babies will be there with ventilators, tubes and yet their skin to skin with their parent. And you watch that heart rate settle. You see the oxygen level goes up. We encourage the parents to read to their babies. We’ll, if the mother is still in hospital, we’ll have something which has her breast milk soaked into it beside the baby’s face. The lights are dim. A lot of the day is quieter. We do developmental rounds to see what is kind of stimulation the good for the baby. And we just try and enhance that development. Talk to parents about how being in a newborn intensive care can be a high risk environment for babies, partly because of what brought them to newborn intensive care, but also that the whole environment is different to what a baby would be in at home. And then working with parents, we bring the babies back, follow them up in the clinic. And because we’ve trained our health professionals to detect cerebral palsy early, that subgroup of babies who will go on to have cerebral palsy, and thankfully it’s a lower proportion thanks to research, then we can advise the parents about the best forms of active early intervention and get in as soon as possible while that baby’s brain is developing and they’re at the time of maximal brain growth and development or maximal neuroplasticity. So it’s a very different environment now and thankfully much kinder and more neuroprotective.

Tracey Spicer: You’ve led so many changes so far. Nadia, what changes do you hope to usher in and see in the future, particularly around things like, say, assistive devices like wheelchairs?

Prof Nadia Badawi: So I don’t really think of myself as leading things to see. What do I do think I have been so lucky is to work with people. I’m very realistic there is not one individual who can do this. It needs to be a collaborative effort. We need to involve everybody. Government policymakers, philanthropists, parents, people with cerebral palsy, researchers, all sorts of people. And together, that’s how we make the difference. And we realised some time ago that we needed to have better technology solutions. So when people say to me, what do you think is the single best invention that has helped people with cerebral palsy? I always say the wheelchair, the good old fashioned, humble wheelchair. Because I grew up in a lower income country. I grew up in Egypt, and to see someone with a disability crawling along the road is very humiliating. It also means that they can’t achieve as much with education. It’s just a terrible thing to witness, and we saw the advent of the wheelchair that’s really transformed things. So technology is a really big answer to the two main issues that people with cerebral palsy tell us need addressing. They want mobility and communication issues solved, and they want them solved in a very dignified, participating and inclusive fashion. So wheelchair is good. The next step was the electric wheelchair. You don’t have to wait for someone to push you. So again, there’s more independence you can zip around in your own wheelchair, so that’s another step to a dignified and independent life. The next thing I saw that really impressed me has been the wheelchair, which somebody can actually stand up in. So, you know, when I was talking once to a young woman who has cerebral palsy, we were both asked to give a speech at the retirement function for Fiona Stanley, the Australian of the Year, and she really started cerebral palsy research in Australia. And she and Eve Blair are two of the people who made sure that Australia was at the forefront of research because they started to register for people who live with cerebral palsy. And I was very fortunate to be able to do my PHD with Fiona Stanley and at her retirement function myself and this young woman, Talia, I think her name was. We were meant to be speaking. She was in a wheelchair and then she pushed the button and I was no longer looking down to her. Turned out she was actually taller than I am and was looking down on me and it was such an equaliser. And I thought so, when she goes to a pub or a bar. She doesn’t have to sit down and have people maybe forget to talk to her or turn around and look down. No, she’s going to be eye to eye if she wants, and that’s if we get it right. Now w hat about communication? I mean, you can hear, I love talking. I love a chat with my friends. I love to talk to my colleagues. And sometimes you see a person who has a very high IQ with cerebral palsy, and they can’t speak because the muscles around speech are affected as part of their cerebral palsy. So we need to help people with cerebral palsy communicate their brilliant ideas and what started out, first of all, with boards where people would point at pictures, that’s getting more and more sophisticated. And the ideal thing there’s one day people with cerebral palsy would be able to communicate freely, and that is a very important complex issue. It involves how do we get their voices to be transmitted so everyone can understand. And also that they should be quick enough because, you know, we all speak very quickly and we flit from one idea to the other. And these are two extremely important avenues that we’re investing in and working with people around the world to help. I mean, you look at the cochlear implant that helps people with deafness here, and I’ve seen for babies who come out of newborn intensive care and I was privileged to have one of my patients come and visit me the day his cochlear implant was turned on and he was banging his ears and running around the clinic. It’s just, I don’t know, it’s just one of those moments I’ll never forget because I thought, wow, this technology has made all the difference. He’s going to go to school, he’s going to be chatting to his colleagues. He’ll get a really great education. And I have seen what technology can do over a lifespan.

Tracey Spicer: Technology really can be life changing, as you say, Nadia, how closely are you working with people in, say, machine learning and assistive technologies?

Prof Nadia Badawi: We’re working very closely with engineers and people around data and machine learning, because if you look at the newborn intensive care unit, it’s all machines. So I work already with a team of biomedical engineers to, you know, keep the ventilators, the incubators, all the monitors running. And also we can see the effect that having a good wheelchair or a communication device can make to somebody with cerebral palsy. So we came up with the idea and actually it was Rob White, who’s our the CEO of Cerebral Palsy Alliance, said we really should invest more in technology because it can be transformative. And he was right because we now work with Professor Alistair McEwan at Sydney University, and he’s such a great expert on assistive technology. He’s become passionate about it, and he is helping us work in the area of prevention of disability. Because we collect data: You look at all the monitors, they are collecting data endlessly and yet we can only as humans look at the data and get a quick snapshot. But he’s helping us look at the trends so that we can detect if a brain damaging event is going to happen before it happens, and we hope to get even better outcomes for babies and newborn intensive care. So that’s just one of the things that he’s doing, and he’s collaborating with CSIRO with other universities, people all around the world. Next thing is communication devices and mobility devices, and he’s working with an occupational therapist, Dr Petra Karlsson, and again, people all around the world and big companies to get behind this because we just have to look at our mobile phones. I mean, they are great communication devices. Ramps. If you look at a ramp in a hotel, they were started to help people in wheelchairs go up and down them. But actually, most people who use ramps are people with ability moving their suitcases up and down. So assistive technology techniques that really work are going to help everybody, including able-bodied people. And I think that he can really change that landscape for people with cerebral palsy. All of us are going to, you know, if we’re lucky, get older, survive, get older, we might have more disability. And I think solutions that we find for people with disability now are going to help the whole community and make us a much more egalitarian, inclusive society. I’ve seen babies now that you give them a communication device, too. It’s amazing how quickly we have a baby with a disability. You give them an iPad, you watch the way it can help them play games, maybe participate like other young children, can give them tools to communicate, to learn. And I think that is just going to transform what we do.

Tracey Spicer: It will be utterly transformative. Nadia, do you think you’ll see a cure for cerebral palsy within your lifetime?

Prof Nadia Badawi: I think that we should look for it. I don’t know that whether it will be in my lifetime or not. But 85 percent of families who have a family member with cerebral palsy, 85 percent of people who have cerebral palsy tell us they want us to look for a cure. They say that you’re looking for cures for cancer or heart disease or epilepsy, for all other conditions, and they want to know why cerebral palsy has not been the target of the search for a cure till recently. Because they are investing huge amounts of time, effort and money in the search for a cure. Whether that cure will happen in my lifetime or not, I don’t know, but I know that if we search for a cure, we’ll get excellent treatment. If we end up even in the situation that cancer is in nowadays, where we said, Look, we’re looking for a cure for cancer, we’ve ended up in the amazing position where so many people are living with cancer and living really healthy and meaningful, you know, quality of life that. That’s as good as a cure. So the search for a cure is the way to get the best treatments and interventions. And I think that people with cerebral palsy and their families deserve us to look for a cure. We need to invest more because the cures or best treatments for cerebral palsy are going to help people with epilepsy, with Parkinson’s, with multiple sclerosis, all sorts of conditions that a lot of society will go through later.

Tracey Spicer: So do you think that all of the research that’s going into cerebral palsy will also have a flow on effect to help everyone with a disability in some way?

Prof Nadia Badawi: We’ve learned so much from research around the prevention treatments and cures for cerebral palsy that will transform the lives of people with cerebral palsy, but they’re also going to be solutions for people who have other neurodevelopmental conditions because the symptoms and signs of conditions like Parkinsonism, multiple sclerosis, strokes in adults, are very similar and have a lot of overlap with cerebral palsy. So someone who needs a wheelchair in all those conditions is going to benefit from developments around assistive technology. They’re also going to benefit from prevention strategies because people don’t realise that nearly 15 percent of children who have cerebral palsy had a stroke. Those strategies will also likely help adults with stroke later. So the overlap is going to be enormous, and that’s why it’s really worth, I think, governments, donors, research bodies investing in this, because cerebral palsy is a lifelong condition.

Tracey Spicer: I cannot thank you enough for your tenacity, your humility and importantly, your words of deep wisdom. Thank you so much for the chat today. It’s been an absolute delight.

Prof Nadia Badawi: Thank you, Tracey. It’s so good for people to hear about cerebral palsy and they should all get involved. Everybody here can make a difference. It’s the only way that we’ve had such great success is by everybody getting on board for this incredibly important cause.

Andy McLean: We hope you enjoyed that conversation. Now, do stay tuned for the next two episodes, which is when we uncover the incredible story of Eve Darcy first from the perspective of her dad, Joe. And then we hear from Nadia again about the role that neonatal care played in Eve’s amazing journey.

Ben McAlary: You’ve been listening to Cerebral Conversations, a podcast produced by Cerebral Palsy Alliance.

Andy McLean: To learn more, check out the show notes to this episode over at cerebral palsy dot org dot a. Forward slash cerebral conversations.

Ben McAlary: And if you enjoyed the show, please write or review on your favourite podcast platform.

Andy McLean: And to join the conversation. Follow us on Facebook and Instagram.

Ben McAlary: Thanks again for listening!

The music for this podcast was kindly supplied by Ocean Alley. Check out the band’s music on Bandcamp or visit oceanalley.com.au

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