September 13, 2021 • 45 mins
One in ten Australian babies spend time in a newborn intensive care unit, and it’s an incredible group of people who are improving outcomes for those infants. However, the greatest success will come when we all get involved. 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 their work at cerebralpalsy.org.au/our-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
Cerebral Conversations is proudly created by the team at the Cerebral Palsy Alliance. Find out more at cerebralpalsy.org.au/cerebralconversations
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Ben McAlary (00:00):
Hello, my name is Ben McAlary.
Andy McLean (00:03):
And I'm Andy McClean. Hello and welcome to the first
ever episode of Cerebral Conversations.
Ben McAlary (00:12):
What a cracker of an episode we have to kickstart
this podcast, Andy.
Andy McLean (00:17):
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 (00:25):
Yeah, when I first heard that statistic, I was floored. It's
something like 1.6 billion people globally.
Andy McLean (00:33):
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 (00:48):
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,
(01:11):
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 (01:20):
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 (01:37):
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 (01:59):
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 (02:17):
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
(02:39):
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 (02:50):
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
(03:16):
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
(03:37):
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
(03:58):
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
(04:21):
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
(04:42):
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 (04:52):
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
(05:15):
cerebral palsy, for example, was caused by problems in labour.
Why was this condition so misunderstood for so long?
Prof Nadia Badawi (05:24):
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
(05:47):
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
(06:09):
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
(06:30):
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
(06:50):
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.
(07:13):
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 (07:30):
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
(07:53):
should choose to challenge the statement
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 (08:08):
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
(08:30):
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.
(08:51):
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.
(09:15):
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
(09:36):
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
(10:00):
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
(10:24):
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
(10:47):
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 (11:01):
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 (11:16):
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
(11:39):
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
(11:59):
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
(12:21):
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 (12:34):
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
(12:54):
that works?
Prof Nadia Badawi (12:56):
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
(13:16):
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
(13:38):
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
(13:59):
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
(14:24):
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
(14:45):
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
(15:06):
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,
(15:29):
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,
(15:50):
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 (16:04):
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
(16:24):
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 (16:38):
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
(17:00):
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
(17:21):
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,
(17:41):
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
(18:04):
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.
(18:25):
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
(18:48):
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 (19:09):
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
(19:30):
because of coronavirus, which we know we'll be living with
for goodness knows how many decades to come.
Prof Nadia Badawi (19:38):
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.
(20:04):
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.
(20:25):
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
(20:47):
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,
(21:10):
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 (21:35):
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 color. Do you think there could be
a huge silver lining in this aspect?
Prof Nadia Badawi (21:57):
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
(22:19):
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
(22:41):
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
(23:03):
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
(23:24):
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
(23:48):
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
(24:08):
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
(24:31):
look like for a baby. So I think that there
are some definite silver linings to this pandemic around the
area of disability.
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
(24:54):
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 (25:07):
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
(25:27):
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 (25:38):
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
(26:00):
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 (26:10):
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
(26:30):
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 (26:53):
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
(27:16):
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
(27:41):
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
(28:05):
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
(28:25):
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
(28:45):
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
(29:09):
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
(29:32):
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
(29:52):
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
(30:16):
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 (30:35):
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 (30:49):
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.
(31:13):
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,
(31:36):
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
(31:58):
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
(32:21):
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
(32:47):
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,
(33:10):
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
(33:33):
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.
(33:54):
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,
(34:16):
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
(34:39):
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
(35:01):
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.
(35:23):
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
(35:46):
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
(36:07):
really great education. And I have seen what technology can
do over a lifespan.
Tracey Spicer (36:16):
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 (36:28):
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
(36:50):
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
(37:16):
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
(37:37):
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,
(37:59):
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
(38:20):
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
(38:43):
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
(39:04):
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
(39:29):
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
(39:54):
going to transform what we do.
Tracey Spicer (39:57):
It will be utterly transformative. Nadia, do you think you'll
see a cure for cerebral palsy within your lifetime?
Prof Nadia Badawi (40:06):
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.
(40:29):
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
(40:51):
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
(41:14):
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
(41:34):
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,
(41:55):
all sorts of conditions that a lot of society will
go through later.
Tracey Spicer (42:03):
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 (42:16):
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,
(42:41):
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
(43:04):
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
(43:24):
in this, because cerebral palsy is a lifelong condition.
Tracey Spicer (43:29):
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 (43:41):
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 (44:02):
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 (44:22):
You've been listening to Cerebral Conversations, a podcast produced by
Cerebral Palsy Alliance.
Andy McLean (44:29):
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 (44:38):
And if you enjoyed the show, please write or review
on your favorite podcast platform.
Andy McLean (44:43):
And to join the conversation. Follow us on Facebook and Instagram.
Ben McAlary (44:47):
Thanks again for listening!
S6 (44:50):
The music for this podcast was kindly supplied by Ocean Alley.
Check out the band's music on Bandcamp or visit ocean
alley.com.au
Hello, my name is Ben McAlary.
Andy McLean (00:03):
And I'm Andy McClean. Hello and welcome to the first
ever episode of Cerebral Conversations.
Ben McAlary (00:12):
What a cracker of an episode we have to kickstart
this podcast, Andy.
Andy McLean (00:17):
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 (00:25):
Yeah, when I first heard that statistic, I was floored. It's
something like 1.6 billion people globally.
Andy McLean (00:33):
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 (00:48):
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,
(01:11):
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 (01:20):
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 (01:37):
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 (01:59):
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 (02:17):
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
(02:39):
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 (02:50):
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
(03:16):
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
(03:37):
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
(03:58):
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
(04:21):
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
(04:42):
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 (04:52):
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
(05:15):
cerebral palsy, for example, was caused by problems in labour.
Why was this condition so misunderstood for so long?
Prof Nadia Badawi (05:24):
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
(05:47):
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
(06:09):
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
(06:30):
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
(06:50):
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.
(07:13):
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 (07:30):
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
(07:53):
should choose to challenge the statement
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 (08:08):
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
(08:30):
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.
(08:51):
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.
(09:15):
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
(09:36):
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
(10:00):
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
(10:24):
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
(10:47):
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 (11:01):
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 (11:16):
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
(11:39):
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
(11:59):
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
(12:21):
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 (12:34):
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
(12:54):
that works?
Prof Nadia Badawi (12:56):
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
(13:16):
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
(13:38):
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
(13:59):
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
(14:24):
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
(14:45):
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
(15:06):
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,
(15:29):
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,
(15:50):
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 (16:04):
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
(16:24):
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 (16:38):
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
(17:00):
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
(17:21):
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,
(17:41):
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
(18:04):
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.
(18:25):
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
(18:48):
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 (19:09):
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
(19:30):
because of coronavirus, which we know we'll be living with
for goodness knows how many decades to come.
Prof Nadia Badawi (19:38):
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.
(20:04):
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.
(20:25):
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
(20:47):
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,
(21:10):
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 (21:35):
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 color. Do you think there could be
a huge silver lining in this aspect?
Prof Nadia Badawi (21:57):
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
(22:19):
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
(22:41):
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
(23:03):
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
(23:24):
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
(23:48):
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
(24:08):
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
(24:31):
look like for a baby. So I think that there
are some definite silver linings to this pandemic around the
area of disability.
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
(24:54):
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 (25:07):
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
(25:27):
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 (25:38):
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
(26:00):
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 (26:10):
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
(26:30):
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 (26:53):
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
(27:16):
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
(27:41):
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
(28:05):
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
(28:25):
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
(28:45):
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
(29:09):
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
(29:32):
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
(29:52):
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
(30:16):
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 (30:35):
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 (30:49):
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.
(31:13):
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,
(31:36):
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
(31:58):
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
(32:21):
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
(32:47):
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,
(33:10):
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
(33:33):
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.
(33:54):
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,
(34:16):
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
(34:39):
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
(35:01):
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.
(35:23):
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
(35:46):
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
(36:07):
really great education. And I have seen what technology can
do over a lifespan.
Tracey Spicer (36:16):
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 (36:28):
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
(36:50):
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
(37:16):
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
(37:37):
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,
(37:59):
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
(38:20):
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
(38:43):
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
(39:04):
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
(39:29):
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
(39:54):
going to transform what we do.
Tracey Spicer (39:57):
It will be utterly transformative. Nadia, do you think you'll
see a cure for cerebral palsy within your lifetime?
Prof Nadia Badawi (40:06):
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.
(40:29):
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
(40:51):
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
(41:14):
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
(41:34):
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,
(41:55):
all sorts of conditions that a lot of society will
go through later.
Tracey Spicer (42:03):
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 (42:16):
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,
(42:41):
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
(43:04):
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
(43:24):
in this, because cerebral palsy is a lifelong condition.
Tracey Spicer (43:29):
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 (43:41):
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 (44:02):
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 (44:22):
You've been listening to Cerebral Conversations, a podcast produced by
Cerebral Palsy Alliance.
Andy McLean (44:29):
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 (44:38):
And if you enjoyed the show, please write or review
on your favorite podcast platform.
Andy McLean (44:43):
And to join the conversation. Follow us on Facebook and Instagram.
Ben McAlary (44:47):
Thanks again for listening!
S6 (44:50):
The music for this podcast was kindly supplied by Ocean Alley.
Check out the band's music on Bandcamp or visit ocean
alley.com.au
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