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Cerebral conversations episode 3 - Early diagnosis and meeting eve
Tina Wild
September 17, 2021

Episode 3 | Early diagnosis and meeting Eve | Nadia Badawi’s story

Join this 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.

Nadia shares her perspective of the remarkable story of meeting baby Eve six years ago. This story was told by Eve’s dad, Joe Darcy, in episode two. Through early diagnosis of cerebral palsy and early intervention baby Eve’s life was transformed from a bleak outlook into the “little blonde cannonball” she is today. 

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

Sign the Window of Opportunity petition for national screening of CP

Watch Joe’s video story about Eve 

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

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

Episode Transcript

Ben McAlary: Hello and welcome to Cerebral Conversations. My name is Ben McAlary,

Andy McLean: 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 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: 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 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: 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: 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: 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, 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. 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 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 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. 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: 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 ? Just tell us a little bit about how that came about.

Nadia Badawi: 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. 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 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, 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. 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. 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, 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, 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 that Cerebral 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: 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, particularly in those early days?

Nadia Badawi: 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 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 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 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 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 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 that the parent as a carer and part of the newborn intensive care team.

Ben McAlary: 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: 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. 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. 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, 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 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 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: 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: 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, 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 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. 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 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. 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 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. So when an insult has happened to the brain or a damage, I think you have even more fertile territory to work.

Andy McLean: 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: 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, 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 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 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 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 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 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 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 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 guys are so altruistic. I shouldn’t be surprised. But I was really heartened by that.

Ben McAlary: 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: 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 health professionals around Australia to detect cerebral palsy early, and the uptake has 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, 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. 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, 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, 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 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 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 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 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 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: 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 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 fact that these NIC units even exist and this is what they can do to benefit your child?

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

Andy McLean: To learn more, check out the show notes to this episode.

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

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

Ben McAlary: Thanks again for listening.

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