September 16, 2021 • 28 mins
A cerebral (palsy) conversation with internationally renowned neonatologist,
Professor Nadia Badawi.
Early in her career, Nadia realised that working with newborns was an opportunity
to change the entire course of a person’s life, not to mention having a huge impact
for their family and the wider community. That realisation has taken her on an incredible path: becoming a leading voice in neonatal intensive care and, six years ago, meeting
baby Eve and helping her become the “little blonde cannonball” she is today.
Nadia looks back on her remarkable career and introduces us to some of the
extraordinary people she’s shared it with.
Cerebral Conversations is proudly created by the team at the Cerebral Palsy Alliance to tackle the big issues around disability and find out what happens when we redefine ‘impossible.’ 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 (00:03):
Hello and welcome to Cerebral Conversations. My name is Ben McAlary,
Andy McLean (00:08):
and I'm Andy McLean. Hello. This is the third episode,
and it also kind of brings to conclusion a little
story that we've been following around early intervention. So in
the last episode, you might recall that we heard from
Joe Darcy all about his daughter Eve and the amazing
journey that Eve and Joe and the Darcy family have
(00:32):
been on. And one of the most important people on
that journey was Professor Nadia Badawi, which kind of brings us
around full circle, Ben, right?
Ben McAlary (00:41):
Yeah, absolutely. So in the first episode, we heard about
the decades of research that Professor Nadia Badawi's done in
regards to early detection and the early diagnosis of cerebral palsy.
And in today's episode, we're going to hear from Nadia
regarding Eve and the processes and systems that are actually
(01:02):
put into place to help families and support families as
they go through the journey of diagnosing cerebral palsy. And
the support provided in the days, weeks and months after birth.
Andy McLean (01:17):
Yeah, I think the thing that really stands out for
me in this episode is just what a team effort
this is. You know, and I think for anybody listening
right now who might be in those first few days
of having somebody in their family with cerebral palsy, this
is the story of why you don't have to do
it alone. So without further ado, let's get into it.
Ben McAlary (01:41):
So, Nadia, welcome to Cerebral Conversations. We want to kick
off this conversation because we've just heard from Joe and
heard his side of the story. I just want to
firstly ask you why you decided to become a newborn
intensive care specialist.
Nadia Badawi (02:01):
I had actually never planned to do medicine. I was
going to do English literature. And the week before university started,
I found that I was writing medicine and I've reflected on it
over the years. What drove me to change suddenly the
week before. And I've grown up in Egypt. I'm half
Irish and half Egyptian. And there's a very strong, you know,
(02:24):
rich literary heritage around that. And my parents were very mindful,
particularly my father, about the plight of babies and women,
especially in low income countries. He'd grown up in a
village in Egypt and he saw what can happen and
that these babies and mothers need a lot of support.
(02:46):
So I think he'd been brainwashing us since we were children.
And that's what I ended up doing, was deciding to
do medicine and also then deciding at first I was
going to do obstetrics, but I found myself much more
interested in the babies, because that's when you can make
such a difference. If you can impact on the life
(03:09):
of a newborn baby, then you're changing 70, 80 years.
You're changing their family's life. And part of me is
addicted to adrenaline. So there's nothing more exciting than intensive care.
And also, you get to work with an amazing team.
I love working in a team and you've got fantastic
(03:32):
neonatal nurses when you see the nurses who work in
newborn intensive care. They are a special breed of person.
They are committed to getting up early. They do night shifts,
weekend shifts away from their families just to make the
lives of sick newborn babies better and get better outcomes.
(03:53):
So I think I have one of the best jobs
in the world. And now I get to also work
with Cerebral Palsy Alliance and try and make the outcomes
for those babies even better into the future.
Andy McLean (04:06):
And Nadia, you mentioned their families, and I'm glad you did,
because today we're here to talk about one family in particular,
which I think brings to life a lot of the
the points that you've already raised here. That's the Darcy family.
Can you just take us back to the circumstances when
you first encountered the Darcy family and learned about Eve ?
(04:29):
Just tell us a little bit about how that came about.
Nadia Badawi (04:32):
So I was sitting in my office at the Children's
Hospital at Westmead, and my desk phone rang. Now, I
never answer my desk phone usually. And I did. And
it so happened I was on my lunch break and
I was sitting in my office. And then this lovely
Irish voice came through. The switch had put him through.
(04:55):
And he said, Ah, I'm Joe. You don't know me
, and because my mom was Irish I immediately know this Irish
accent comes through. And he says, I've got a baby
at this hospital. And she's had a catastrophic brain injury.
And I've looked up on the website and the Cerebral
(05:16):
Palsy Alliance keeps coming up. And I've watched a couple
of videos that you're in and you're talking about cerebral
palsy and what families can do to help babies develop better.
And actually, I'm I'm sure Joe won't mind me telling you,
but he was actually discussing the fact that intensive treatment,
(05:40):
ventilation had been withdrawn because she was felt to have
such a catastrophic brain injury that she was unlikely to
survive and if she survived, would have an extremely severe
form of cerebral palsy. And we talked about that. And
then he said, but actually, she survived and she's now breathing.
(06:04):
So what can we do now? And we revisited the
time around the cessation of intensive care therapy, and we
discussed how challenging that can be. It's difficult for every
one but these conversations do sometimes happen in intensive care.
And families have the right to be part of that decision.
(06:25):
And they are, in our view nowadays, the lead decision makers.
So we talked about it and it was clear that,
you know, Evie was going to survive now and what
could he do to make her life better? And we
talked about reading to her while she was a baby,
(06:45):
trying to encourage sucking, showing her mobiles, doing simple things,
talking with her. And then we talked about Cerebral Palsy
Alliance and actually how we were really starting to do
early diagnosis using the general movement's assessment. Luckily for Joe,
(07:07):
here at the unit, the hospital that she was born in
is actually a top grade unit, and they had availed
themselves of the training that Cerebral Palsy Alliance was providing.
So they were able to detect her cerebral palsy early.
They also, to go back earlier, they had thought about
cooling her because we know that one of the therapies
(07:31):
that C erebral Palsy Alliance and other newborn intensive care
units around Australia and the world are championing is the
cooling of the babies who have had a lack of
oxygen or blood flow around the time of birth. So
there were some therapies we could offer some hope.
Ben McAlary (07:51):
So, Nadia, in Joe's story, he spoke about the importance
of kangaroo cuddles, and it's something that Andy and I
reflected on, and it was like a light bulb moment.
I almost forgot about it, but it was such a
beautiful time to have that skin to skin contact with
your baby. Could you tell me why is that so important,
(08:13):
particularly in those early days?
Nadia Badawi (08:15):
All of us yearn to be held by people who
care about us. Babies are the same. And to have
a little baby in an incubator on a ventilator with tubes,
blood tests, so every touch is hostile is a terrible
way for a baby to live. Increasingly, we've wanted babies
(08:43):
to feel the touch of a loving person, their parent.
And now we encourage fathers and mothers to hold their baby,
no matter how sick they are, even if they're on
a ventilator with tubes sticking out of them to have
(09:04):
that skin to skin contact, because it just tells the
baby that somebody who loves them is there, cares about them.
It's also a familiar and constant touch, sense, sound of
a voice. It makes all the difference. I walk around
my unit and I see these incredibly sick babies out
(09:26):
on their parent's chest. And you watch their heart rate stabilise,
the oxygen levels stabilise. And you think this is making
such a difference. And, you know, it's so, you'll see
parents sitting there for hours doing this. And it means
that the babies are less stressed. We know stress is
not good for the developing brain. There's less pain. And
(09:49):
the other thing it does is that it's a symbol
of family's participation in their baby's experience through newborn intensive care.
So it's not just the skin to skin care. It's
a symbol that we are trying to protect their baby's brain.
It means they're more likely to speak up about things
(10:12):
they want to do. They'll speak to their baby. They'll
sing to their baby while they're touching them. We're less
likely to poke and prod at a baby who's being
held by their parents. The parents then will learn to
feed their baby, change their baby, even when they're on
a ventilator. And I think it's just to me, it's
(10:33):
that the parent as a carer and part of the
newborn intensive care team.
Ben McAlary (10:40):
So, Nadia, just going back seven, eight years, once Evie
was out of the NIC unit and was at home,
I believe that you guys went out and saw her.
How did she actually originally present with cerebral palsy?
Nadia Badawi (10:55):
So when Joe spoke to me, I then contacted the
unit he was in and said, look, Joe and Hiam have
contacted me. Are you alright if we establish a relationship
and try and help? And the doctors there said, oh, look,
we just love Cerebral Palsy Alliance. We love the work
you guys are doing, and please, we'd love your support.
(11:19):
So we went and saw them at home and we
videoed Evie at about 15, 14 weeks, which is the
ideal time to pick up cerebral palsy on the general
movement's assessment video. And it was clear that she was
going to have cerebral palsy. It's 96, 97 percent accurate.
(11:44):
So we didn't just leave it there, luckily, we had
a much better idea of what could be done, and
we thought, look, this is the time of maximal brain growth.
So instead of waiting for two years, as we had
traditionally done, to give therapy, we were able to get
in early with a very motivated, clever family. We said, look,
(12:07):
what are your goals for Evie? What are the things
that you want her to achieve that we can help with?
And they said that and one of my colleagues was
really good at active early intervention, helped them guide around toys, books, activities.
And honestly, when you see Evie now, it's really quite
(12:28):
extraordinary because I'm standing in Cerebral Palsy Alliance and this
little blonde cannonball just ran around and I thought, I
can't believe it. She was chasing a typically developing child
down the corridor. And I thought, this can't be the
same girl. And the next time I saw her, she
(12:50):
was the sociable little girl who was chattering away, wearing a
mermaid suit. And I'm rarely surprised. I suppose I've been
doing this for a long time. But Evie had an
amazing outcome, given the terrible events before she was born.
Andy McLean (13:08):
Well you mentioned early diagnosis, and it sounds like the earlier
you can have that identification, that diagnosis, the earlier you
can start making an impact Nadia. Tell us a bit
about that.
Nadia Badawi (13:22):
We've learned from adults who've had a stroke t hat as
soon as they get diagnosed, it is now the standard
of care in Australia and other high income countries that
you get in within three days, give active intervention. So
none of this passive stretching. And no, you get people up,
(13:46):
you get them to be active, you give them speech therapy,
occupational therapy, physiotherapy, and this results in amazing outcomes. So
we know from the adult literature that people who have
had a stroke and get active intervention early on and
(14:07):
a lot of hours, they are more likely to walk independently,
more likely to use their hands independently and more likely
to regain speech. It's proven beyond a doubt, but we
were leaving babies for up to two years without active intervention.
(14:27):
So we we are waiting to see whether these amazing
effects in adults are going to be replicated in children.
And I think we're going to have even better results,
because that's the time of maximal brain growth. And we
know the brain changes with time. We've seen those terrible
results from the Romanian orphanages where children were left deprived
(14:53):
with little stimulation because the orphanages were so busy, not
because the staff were cruel. They just couldn't keep up
with the volume of children who needed support. And those
children's IQ dropped on average by 20 points. So we
can see what deprivation does when your brain is growing.
(15:14):
And then it just makes sense that your brain can
also develop more given the right stimulation. We know that
from taxi drivers in London who have a part of
their brain called the hippocampus that is super developed because
they're used to navigating the roads around London. Musicians have
(15:35):
certain parts of their brains are overdeveloped, linguists. These are
adults whose brains are changing to a stimulus. I bet
you for a young child, that is going to be
enhanced even further. We know that you can increase children's
reading ability, children's sports ability, their cognition by targeted stimulation.
(16:00):
So when an insult has happened to the brain or
a damage, I think you have even more fertile territory
to work.
Andy McLean (16:10):
So, Nadia, what would be your standout advice then for
parents who are encountering cerebral palsy, perhaps for the first time?
What would you say to them? There might be people
listening right now in that position.
Nadia Badawi (16:22):
So I would say go to a trusted source. And
it's not just because I work for Cerebral Palsy Alliance,
but I do tell parents to look at the website
and they come from actually all over the world to
look at our website. I know that because the information
is it's it's up to date, first of all. And also,
(16:45):
it gives the wide variety. So cerebral palsy is not
a one size fits all diagnosis. Another one is to
ask for support. So psychological support, social work support is
very important. And also to see, does the person they're
talking to actually know about cerebral palsy? You'd be surprised
(17:09):
how many health professionals are still behind the times and
don't have accurate advice. So I think it's important to
make sure they've got good up to date information that
helps them. We need to ask, OK, what do I
do now? Because I have parents will say, well, I've
got this. My beautiful little baby has been told that they
(17:32):
have cerebral palsy. Where do I go now? And we
need to help parents navigate the next few years, because
there's a lot that can be done to make their
child's quality of life much better. In the past, we
used to have a high rate of dislocation of the hips.
About 35 percent of children with cerebral palsy would have
(17:53):
dislocated hips. Very painful. They'd need surgery. Now you can
intervene early and make sure those hips don't dislocate. We
have a program called Checkup which monitors children. We know
that children can have pain on a daily basis, intervene early,
detect it early, get proper management, feeding issues. All those issues
(18:19):
can be dealt with if they're detected early. By following
up with a reliable organisation that has a whole team
of specialists who know what they're doing. That is so important,
that is the huge difference for families. The other thing
(18:40):
is to find support from other families. I believe that's
really important. Families that you trust who are perhaps similar minded,
a parent understands another parent in a way no other
person can. And I think supporting each other is incredibly important.
I think the other thing that's really critical is to
(19:02):
be very optimistic, get involved, make decisions, get involved in
our research. You know, the reason that I think the
research community is getting so much better is that my
colleagues years ago surveyed parents and people with CP and
(19:22):
scientists and health professionals said, what is it you want
from our research program? What matters to you? And you
know what I was shocked by to see that parents'
number one priority was to help prevent cerebral palsy for
other parents and other babies. I thought, my God, you
(19:44):
guys are so altruistic. I shouldn't be surprised. But I
was really heartened by that.
Ben McAlary (19:51):
Nadia, there's no doubt how far we've come through early diagnosis.
I mean, in Joe's story, he reflected that, you know,
eight years ago these programs were in their infancy, but
they have no doubt impacted Eve's life. Can you take
us through what's next for these programs?
Nadia Badawi (20:11):
So, I mean, one of the things that I'm really
thrilled with was that CP Alliance with other support of
other like minded people embarked on training h ealth professionals around
Australia to detect cerebral palsy early, and the uptake has
(20:33):
been extraordinary. Every single newborn intensive care unit in Australia
has trained professionals who can detect cerebral palsy early. Now,
that is fantastic, because 50 percent of people who end
up with a diagnosis of cerebral palsy were cared for
in a newborn intensive care unit or special care nursery,
(20:57):
because a lot of people with cerebral palsy are premature.
And where do premature babies go? They go to newborn
intensive care and some other term babies will have conditions
around the time of birth or maybe have congenital heart disease.
That's 50 percent. The other 50 percent are in the community.
(21:18):
They're born at standard hospitals. They go home. No one's worried.
The parents then start saying a few months later, something's
not right. My baby is different. Maybe they're not feeding
properly or they're stiff in their arms or their legs,
and then they start looking for diagnosis. Those families, I feel,
(21:41):
are being let down. And I hear horror stories from mothers.
They'll say they went to the doctor and they were
told your baby's a typical, they're just a lazy baby. They
won't suck properly. That mother is struggling, saying something's different.
I can't get help. I need a diagnosis. Something's different eventually,
(22:02):
usually around a year of age to 18 months, they get
the diagnosis. What we want, at CP Alliance and a lot of
other organisations, is to help diagnose those babies early, which
means that we need to roll out a national screening program.
So anyone who's had a baby has had the babies
(22:22):
hearing tested. And now we know that we can intervene
early cochlear implants hearing aids, transforming the lives of people
who are born with deafness. We should be able to
do the same for cerebral palsy. The next thing is
that because early intervention for most people with cerebral palsy
(22:44):
is a recent phenomenon, we haven't been able in the
past to do lots of trials to know what works best.
The last five years in Australia and around the world,
we have seen an explosion in research in the area
to see what works best, what type of therapy, what
(23:06):
type of cognitive or intellectual input, how long, how much,
how fast, who can do it. And we also are
looking at other things with not just therapy. Parents are saying, well,
are stem cells going to work? That is one of
parent's biggest requests, so I think that we will have
(23:30):
a whole lot of early research rolling out in stem
cells because I don't know if you know, but hundreds
of Australian families are taking their children overseas at great risk,
great costs to get unproven treatments. And in Australia, we
can do ethical safe as can be, best research on stem
(23:52):
cells and other therapies that parents are crying out for.
So I think we're at the beginning of early intervention research,
because early detection has just happened recently.
Ben McAlary (24:06):
Nadia, I think it is incredible, that statistic that you mentioned,
that one in 10 babies born in Australia end up
in a NIC unit in our hospitals. In fact, my
daughter and was in a NIC unit for a period
of time. And I do remember it was such a
traumatic experience. So I get quite emotional just even thinking
(24:28):
about it, yet during all the prenatal lessons and information
that we read, t here was no mention of of a
NIC unit or a NIC unit being required or possibly required.
Do you think that it is, there needs to be
some greater education, particularly in those early stages, around the
(24:49):
fact that these NIC units even exist and this is
what they can do to benefit your child?
Nadia Badawi (24:55):
Yes, I do think it's very important. And I think
that we we don't want to scare parents, but I
think that that actually is a very old fashioned view.
People are on the Internet all the time. They're hungry
for information. And it's very important for them to know,
first of all, what are the things they can do
(25:16):
in pregnancy to prevent cerebral palsy. We've identified through our
research some preventative strategies. So we know that this virus,
CMV Cytomegalovirus, is an important cause of cerebral palsy, prematurity.
And parents don't know about these things. Australia has a
(25:36):
seven percent premature birth rate. That's one of the lowest
in the world. But it still means that nearly 10
percent of all Australian babies are born too soon. And
they will probably need the help of a special care
nursery or a newborn intensive care unit. The parents end
up shocked in a strange place that they can't navigate,
(26:01):
even though we're trying harder now to be friendlier and
more inclusive. And I think more could be done to
help parents during pregnancy understand that there is this great service.
I do think newborn intensive care unit is a great
service that a high income country can provide.
Andy McLean (26:21):
Nadia, on behalf of Ben and myself and I think
everybody listening, we just wanted to say thank you for
all you do. And thank you so much for taking
the time to talk with us today.
Nadia Badawi (26:32):
Thank you. I think and thank you for helping us
highlight an issue that is really important. And I hope
that if people hear this and they want to participate,
please get on board. We cannot work in this area
on our own. Health and wellbeing of children and families
(26:54):
is something that every member of the community has a
part of and can make a huge difference. So only
by collaborating with everybody in all sorts of ways that
we can make a difference.
Ben McAlary (27:09):
You've been listening to Cerebral Conversations, a podcast produced by
Cerebral Palsy Alliance.
Andy McLean (27:16):
To learn more, check out the show notes to this
episode over at cerebral palsy.org.au/ cerebral conversations.
Ben McAlary (27:25):
And if you enjoyed the show, please rate or review
on your favorite podcast platform.
Andy McLean (27:31):
And to join the conversation, follow us on Facebook and Instagram.
Ben McAlary (27:35):
Thanks again for listening.
S4 (27:37):
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 and welcome to Cerebral Conversations. My name is Ben McAlary,
Andy McLean (00:08):
and I'm Andy McLean. Hello. This is the third episode,
and it also kind of brings to conclusion a little
story that we've been following around early intervention. So in
the last episode, you might recall that we heard from
Joe Darcy all about his daughter Eve and the amazing
journey that Eve and Joe and the Darcy family have
(00:32):
been on. And one of the most important people on
that journey was Professor Nadia Badawi, which kind of brings us
around full circle, Ben, right?
Ben McAlary (00:41):
Yeah, absolutely. So in the first episode, we heard about
the decades of research that Professor Nadia Badawi's done in
regards to early detection and the early diagnosis of cerebral palsy.
And in today's episode, we're going to hear from Nadia
regarding Eve and the processes and systems that are actually
(01:02):
put into place to help families and support families as
they go through the journey of diagnosing cerebral palsy. And
the support provided in the days, weeks and months after birth.
Andy McLean (01:17):
Yeah, I think the thing that really stands out for
me in this episode is just what a team effort
this is. You know, and I think for anybody listening
right now who might be in those first few days
of having somebody in their family with cerebral palsy, this
is the story of why you don't have to do
it alone. So without further ado, let's get into it.
Ben McAlary (01:41):
So, Nadia, welcome to Cerebral Conversations. We want to kick
off this conversation because we've just heard from Joe and
heard his side of the story. I just want to
firstly ask you why you decided to become a newborn
intensive care specialist.
Nadia Badawi (02:01):
I had actually never planned to do medicine. I was
going to do English literature. And the week before university started,
I found that I was writing medicine and I've reflected on it
over the years. What drove me to change suddenly the
week before. And I've grown up in Egypt. I'm half
Irish and half Egyptian. And there's a very strong, you know,
(02:24):
rich literary heritage around that. And my parents were very mindful,
particularly my father, about the plight of babies and women,
especially in low income countries. He'd grown up in a
village in Egypt and he saw what can happen and
that these babies and mothers need a lot of support.
(02:46):
So I think he'd been brainwashing us since we were children.
And that's what I ended up doing, was deciding to
do medicine and also then deciding at first I was
going to do obstetrics, but I found myself much more
interested in the babies, because that's when you can make
such a difference. If you can impact on the life
(03:09):
of a newborn baby, then you're changing 70, 80 years.
You're changing their family's life. And part of me is
addicted to adrenaline. So there's nothing more exciting than intensive care.
And also, you get to work with an amazing team.
I love working in a team and you've got fantastic
(03:32):
neonatal nurses when you see the nurses who work in
newborn intensive care. They are a special breed of person.
They are committed to getting up early. They do night shifts,
weekend shifts away from their families just to make the
lives of sick newborn babies better and get better outcomes.
(03:53):
So I think I have one of the best jobs
in the world. And now I get to also work
with Cerebral Palsy Alliance and try and make the outcomes
for those babies even better into the future.
Andy McLean (04:06):
And Nadia, you mentioned their families, and I'm glad you did,
because today we're here to talk about one family in particular,
which I think brings to life a lot of the
the points that you've already raised here. That's the Darcy family.
Can you just take us back to the circumstances when
you first encountered the Darcy family and learned about Eve ?
(04:29):
Just tell us a little bit about how that came about.
Nadia Badawi (04:32):
So I was sitting in my office at the Children's
Hospital at Westmead, and my desk phone rang. Now, I
never answer my desk phone usually. And I did. And
it so happened I was on my lunch break and
I was sitting in my office. And then this lovely
Irish voice came through. The switch had put him through.
(04:55):
And he said, Ah, I'm Joe. You don't know me
, and because my mom was Irish I immediately know this Irish
accent comes through. And he says, I've got a baby
at this hospital. And she's had a catastrophic brain injury.
And I've looked up on the website and the Cerebral
(05:16):
Palsy Alliance keeps coming up. And I've watched a couple
of videos that you're in and you're talking about cerebral
palsy and what families can do to help babies develop better.
And actually, I'm I'm sure Joe won't mind me telling you,
but he was actually discussing the fact that intensive treatment,
(05:40):
ventilation had been withdrawn because she was felt to have
such a catastrophic brain injury that she was unlikely to
survive and if she survived, would have an extremely severe
form of cerebral palsy. And we talked about that. And
then he said, but actually, she survived and she's now breathing.
(06:04):
So what can we do now? And we revisited the
time around the cessation of intensive care therapy, and we
discussed how challenging that can be. It's difficult for every
one but these conversations do sometimes happen in intensive care.
And families have the right to be part of that decision.
(06:25):
And they are, in our view nowadays, the lead decision makers.
So we talked about it and it was clear that,
you know, Evie was going to survive now and what
could he do to make her life better? And we
talked about reading to her while she was a baby,
(06:45):
trying to encourage sucking, showing her mobiles, doing simple things,
talking with her. And then we talked about Cerebral Palsy
Alliance and actually how we were really starting to do
early diagnosis using the general movement's assessment. Luckily for Joe,
(07:07):
here at the unit, the hospital that she was born in
is actually a top grade unit, and they had availed
themselves of the training that Cerebral Palsy Alliance was providing.
So they were able to detect her cerebral palsy early.
They also, to go back earlier, they had thought about
cooling her because we know that one of the therapies
(07:31):
that C erebral Palsy Alliance and other newborn intensive care
units around Australia and the world are championing is the
cooling of the babies who have had a lack of
oxygen or blood flow around the time of birth. So
there were some therapies we could offer some hope.
Ben McAlary (07:51):
So, Nadia, in Joe's story, he spoke about the importance
of kangaroo cuddles, and it's something that Andy and I
reflected on, and it was like a light bulb moment.
I almost forgot about it, but it was such a
beautiful time to have that skin to skin contact with
your baby. Could you tell me why is that so important,
(08:13):
particularly in those early days?
Nadia Badawi (08:15):
All of us yearn to be held by people who
care about us. Babies are the same. And to have
a little baby in an incubator on a ventilator with tubes,
blood tests, so every touch is hostile is a terrible
way for a baby to live. Increasingly, we've wanted babies
(08:43):
to feel the touch of a loving person, their parent.
And now we encourage fathers and mothers to hold their baby,
no matter how sick they are, even if they're on
a ventilator with tubes sticking out of them to have
(09:04):
that skin to skin contact, because it just tells the
baby that somebody who loves them is there, cares about them.
It's also a familiar and constant touch, sense, sound of
a voice. It makes all the difference. I walk around
my unit and I see these incredibly sick babies out
(09:26):
on their parent's chest. And you watch their heart rate stabilise,
the oxygen levels stabilise. And you think this is making
such a difference. And, you know, it's so, you'll see
parents sitting there for hours doing this. And it means
that the babies are less stressed. We know stress is
not good for the developing brain. There's less pain. And
(09:49):
the other thing it does is that it's a symbol
of family's participation in their baby's experience through newborn intensive care.
So it's not just the skin to skin care. It's
a symbol that we are trying to protect their baby's brain.
It means they're more likely to speak up about things
(10:12):
they want to do. They'll speak to their baby. They'll
sing to their baby while they're touching them. We're less
likely to poke and prod at a baby who's being
held by their parents. The parents then will learn to
feed their baby, change their baby, even when they're on
a ventilator. And I think it's just to me, it's
(10:33):
that the parent as a carer and part of the
newborn intensive care team.
Ben McAlary (10:40):
So, Nadia, just going back seven, eight years, once Evie
was out of the NIC unit and was at home,
I believe that you guys went out and saw her.
How did she actually originally present with cerebral palsy?
Nadia Badawi (10:55):
So when Joe spoke to me, I then contacted the
unit he was in and said, look, Joe and Hiam have
contacted me. Are you alright if we establish a relationship
and try and help? And the doctors there said, oh, look,
we just love Cerebral Palsy Alliance. We love the work
you guys are doing, and please, we'd love your support.
(11:19):
So we went and saw them at home and we
videoed Evie at about 15, 14 weeks, which is the
ideal time to pick up cerebral palsy on the general
movement's assessment video. And it was clear that she was
going to have cerebral palsy. It's 96, 97 percent accurate.
(11:44):
So we didn't just leave it there, luckily, we had
a much better idea of what could be done, and
we thought, look, this is the time of maximal brain growth.
So instead of waiting for two years, as we had
traditionally done, to give therapy, we were able to get
in early with a very motivated, clever family. We said, look,
(12:07):
what are your goals for Evie? What are the things
that you want her to achieve that we can help with?
And they said that and one of my colleagues was
really good at active early intervention, helped them guide around toys, books, activities.
And honestly, when you see Evie now, it's really quite
(12:28):
extraordinary because I'm standing in Cerebral Palsy Alliance and this
little blonde cannonball just ran around and I thought, I
can't believe it. She was chasing a typically developing child
down the corridor. And I thought, this can't be the
same girl. And the next time I saw her, she
(12:50):
was the sociable little girl who was chattering away, wearing a
mermaid suit. And I'm rarely surprised. I suppose I've been
doing this for a long time. But Evie had an
amazing outcome, given the terrible events before she was born.
Andy McLean (13:08):
Well you mentioned early diagnosis, and it sounds like the earlier
you can have that identification, that diagnosis, the earlier you
can start making an impact Nadia. Tell us a bit
about that.
Nadia Badawi (13:22):
We've learned from adults who've had a stroke t hat as
soon as they get diagnosed, it is now the standard
of care in Australia and other high income countries that
you get in within three days, give active intervention. So
none of this passive stretching. And no, you get people up,
(13:46):
you get them to be active, you give them speech therapy,
occupational therapy, physiotherapy, and this results in amazing outcomes. So
we know from the adult literature that people who have
had a stroke and get active intervention early on and
(14:07):
a lot of hours, they are more likely to walk independently,
more likely to use their hands independently and more likely
to regain speech. It's proven beyond a doubt, but we
were leaving babies for up to two years without active intervention.
(14:27):
So we we are waiting to see whether these amazing
effects in adults are going to be replicated in children.
And I think we're going to have even better results,
because that's the time of maximal brain growth. And we
know the brain changes with time. We've seen those terrible
results from the Romanian orphanages where children were left deprived
(14:53):
with little stimulation because the orphanages were so busy, not
because the staff were cruel. They just couldn't keep up
with the volume of children who needed support. And those
children's IQ dropped on average by 20 points. So we
can see what deprivation does when your brain is growing.
(15:14):
And then it just makes sense that your brain can
also develop more given the right stimulation. We know that
from taxi drivers in London who have a part of
their brain called the hippocampus that is super developed because
they're used to navigating the roads around London. Musicians have
(15:35):
certain parts of their brains are overdeveloped, linguists. These are
adults whose brains are changing to a stimulus. I bet
you for a young child, that is going to be
enhanced even further. We know that you can increase children's
reading ability, children's sports ability, their cognition by targeted stimulation.
(16:00):
So when an insult has happened to the brain or
a damage, I think you have even more fertile territory
to work.
Andy McLean (16:10):
So, Nadia, what would be your standout advice then for
parents who are encountering cerebral palsy, perhaps for the first time?
What would you say to them? There might be people
listening right now in that position.
Nadia Badawi (16:22):
So I would say go to a trusted source. And
it's not just because I work for Cerebral Palsy Alliance,
but I do tell parents to look at the website
and they come from actually all over the world to
look at our website. I know that because the information
is it's it's up to date, first of all. And also,
(16:45):
it gives the wide variety. So cerebral palsy is not
a one size fits all diagnosis. Another one is to
ask for support. So psychological support, social work support is
very important. And also to see, does the person they're
talking to actually know about cerebral palsy? You'd be surprised
(17:09):
how many health professionals are still behind the times and
don't have accurate advice. So I think it's important to
make sure they've got good up to date information that
helps them. We need to ask, OK, what do I
do now? Because I have parents will say, well, I've
got this. My beautiful little baby has been told that they
(17:32):
have cerebral palsy. Where do I go now? And we
need to help parents navigate the next few years, because
there's a lot that can be done to make their
child's quality of life much better. In the past, we
used to have a high rate of dislocation of the hips.
About 35 percent of children with cerebral palsy would have
(17:53):
dislocated hips. Very painful. They'd need surgery. Now you can
intervene early and make sure those hips don't dislocate. We
have a program called Checkup which monitors children. We know
that children can have pain on a daily basis, intervene early,
detect it early, get proper management, feeding issues. All those issues
(18:19):
can be dealt with if they're detected early. By following
up with a reliable organisation that has a whole team
of specialists who know what they're doing. That is so important,
that is the huge difference for families. The other thing
(18:40):
is to find support from other families. I believe that's
really important. Families that you trust who are perhaps similar minded,
a parent understands another parent in a way no other
person can. And I think supporting each other is incredibly important.
I think the other thing that's really critical is to
(19:02):
be very optimistic, get involved, make decisions, get involved in
our research. You know, the reason that I think the
research community is getting so much better is that my
colleagues years ago surveyed parents and people with CP and
(19:22):
scientists and health professionals said, what is it you want
from our research program? What matters to you? And you
know what I was shocked by to see that parents'
number one priority was to help prevent cerebral palsy for
other parents and other babies. I thought, my God, you
(19:44):
guys are so altruistic. I shouldn't be surprised. But I
was really heartened by that.
Ben McAlary (19:51):
Nadia, there's no doubt how far we've come through early diagnosis.
I mean, in Joe's story, he reflected that, you know,
eight years ago these programs were in their infancy, but
they have no doubt impacted Eve's life. Can you take
us through what's next for these programs?
Nadia Badawi (20:11):
So, I mean, one of the things that I'm really
thrilled with was that CP Alliance with other support of
other like minded people embarked on training h ealth professionals around
Australia to detect cerebral palsy early, and the uptake has
(20:33):
been extraordinary. Every single newborn intensive care unit in Australia
has trained professionals who can detect cerebral palsy early. Now,
that is fantastic, because 50 percent of people who end
up with a diagnosis of cerebral palsy were cared for
in a newborn intensive care unit or special care nursery,
(20:57):
because a lot of people with cerebral palsy are premature.
And where do premature babies go? They go to newborn
intensive care and some other term babies will have conditions
around the time of birth or maybe have congenital heart disease.
That's 50 percent. The other 50 percent are in the community.
(21:18):
They're born at standard hospitals. They go home. No one's worried.
The parents then start saying a few months later, something's
not right. My baby is different. Maybe they're not feeding
properly or they're stiff in their arms or their legs,
and then they start looking for diagnosis. Those families, I feel,
(21:41):
are being let down. And I hear horror stories from mothers.
They'll say they went to the doctor and they were
told your baby's a typical, they're just a lazy baby. They
won't suck properly. That mother is struggling, saying something's different.
I can't get help. I need a diagnosis. Something's different eventually,
(22:02):
usually around a year of age to 18 months, they get
the diagnosis. What we want, at CP Alliance and a lot of
other organisations, is to help diagnose those babies early, which
means that we need to roll out a national screening program.
So anyone who's had a baby has had the babies
(22:22):
hearing tested. And now we know that we can intervene
early cochlear implants hearing aids, transforming the lives of people
who are born with deafness. We should be able to
do the same for cerebral palsy. The next thing is
that because early intervention for most people with cerebral palsy
(22:44):
is a recent phenomenon, we haven't been able in the
past to do lots of trials to know what works best.
The last five years in Australia and around the world,
we have seen an explosion in research in the area
to see what works best, what type of therapy, what
(23:06):
type of cognitive or intellectual input, how long, how much,
how fast, who can do it. And we also are
looking at other things with not just therapy. Parents are saying, well,
are stem cells going to work? That is one of
parent's biggest requests, so I think that we will have
(23:30):
a whole lot of early research rolling out in stem
cells because I don't know if you know, but hundreds
of Australian families are taking their children overseas at great risk,
great costs to get unproven treatments. And in Australia, we
can do ethical safe as can be, best research on stem
(23:52):
cells and other therapies that parents are crying out for.
So I think we're at the beginning of early intervention research,
because early detection has just happened recently.
Ben McAlary (24:06):
Nadia, I think it is incredible, that statistic that you mentioned,
that one in 10 babies born in Australia end up
in a NIC unit in our hospitals. In fact, my
daughter and was in a NIC unit for a period
of time. And I do remember it was such a
traumatic experience. So I get quite emotional just even thinking
(24:28):
about it, yet during all the prenatal lessons and information
that we read, t here was no mention of of a
NIC unit or a NIC unit being required or possibly required.
Do you think that it is, there needs to be
some greater education, particularly in those early stages, around the
(24:49):
fact that these NIC units even exist and this is
what they can do to benefit your child?
Nadia Badawi (24:55):
Yes, I do think it's very important. And I think
that we we don't want to scare parents, but I
think that that actually is a very old fashioned view.
People are on the Internet all the time. They're hungry
for information. And it's very important for them to know,
first of all, what are the things they can do
(25:16):
in pregnancy to prevent cerebral palsy. We've identified through our
research some preventative strategies. So we know that this virus,
CMV Cytomegalovirus, is an important cause of cerebral palsy, prematurity.
And parents don't know about these things. Australia has a
(25:36):
seven percent premature birth rate. That's one of the lowest
in the world. But it still means that nearly 10
percent of all Australian babies are born too soon. And
they will probably need the help of a special care
nursery or a newborn intensive care unit. The parents end
up shocked in a strange place that they can't navigate,
(26:01):
even though we're trying harder now to be friendlier and
more inclusive. And I think more could be done to
help parents during pregnancy understand that there is this great service.
I do think newborn intensive care unit is a great
service that a high income country can provide.
Andy McLean (26:21):
Nadia, on behalf of Ben and myself and I think
everybody listening, we just wanted to say thank you for
all you do. And thank you so much for taking
the time to talk with us today.
Nadia Badawi (26:32):
Thank you. I think and thank you for helping us
highlight an issue that is really important. And I hope
that if people hear this and they want to participate,
please get on board. We cannot work in this area
on our own. Health and wellbeing of children and families
(26:54):
is something that every member of the community has a
part of and can make a huge difference. So only
by collaborating with everybody in all sorts of ways that
we can make a difference.
Ben McAlary (27:09):
You've been listening to Cerebral Conversations, a podcast produced by
Cerebral Palsy Alliance.
Andy McLean (27:16):
To learn more, check out the show notes to this
episode over at cerebral palsy.org.au/ cerebral conversations.
Ben McAlary (27:25):
And if you enjoyed the show, please rate or review
on your favorite podcast platform.
Andy McLean (27:31):
And to join the conversation, follow us on Facebook and Instagram.
Ben McAlary (27:35):
Thanks again for listening.
S4 (27:37):
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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