Childhood stroke

Episode 26, 2 September 2020

Many people are unaware that children and babies can have strokes, and parents are often left with nowhere to turn. Fortunately that situation is changing, with support groups for parents and the new Our Family’s Stroke Journey resource from the Stroke Foundation. In this podcast, we talk about what it’s like to have a baby or child who’s had a stroke, what can cause the stroke and what can be done about it, and what help is available.

We speak to Dee Honeychurch and Kylie Facer, mothers of children who’ve had strokes and co-founders of the support group Little Stroke Warriors Australia; paediatric neurologist Associate Professor Mark Mackay from the Royal Children’s Hospital Melbourne and member of the Stroke Foundation’s Clinical Council; and Katherine David from the Stroke Foundation, who managed the development of the resource Our Family’s Stroke Journey.

Download Our Family's Stroke Journey (PDF 2.15 MB)

 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals. You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat, and beat stroke.

Chris: [00:44] Many people are unaware that children and babies can have strokes the same as adults, and parents are often left in a position where they don't know what help is available or even who to ask. Fortunately, that situation is changing, with support groups for parents of a kid who's had a stroke and a new information resource from the Stroke Foundation, and most recently the announcement of government funding for research into treatments for stroke in babies and children.

So in this podcast we're going to talk about what it's like to have a baby or child who's had a stroke, what can cause the stroke and what can be done about it, and what help is available. At the moment we are still in the midst of the COVID-19 pandemic so we're all recording remotely, but on the line we have Dee Honeychurch and Kylie Facer, co-founders of the support group Little Stroke Warriors Australia, and mothers of Emma and Anika respectively. Hello, Dee and Kylie.

Dee: Hi.

Kylie: Hi, how are you?

Chris: We're also speaking to paediatric neurologist Associate Professor Mark Mackay, from the Royal Children's Hospital, Melbourne. And Mark is also a member of the Stroke Foundation's Clinical Council. Welcome, Mark.

Mark: Thanks very much, happy to be here.

Chris: And later on we'll talk to Katherine David from the Stroke Foundation, who's worked with Dee and Kylie, and with Mark I believe, to develop the resource for parents called Our Family's Stroke Journey. Hi Katherine, looking forward to it.

KD: Hi Chris, thanks for having me.

Chris: [02:03] First though, I do want to start with you Dee and ask about your family's experience. Could you tell us a bit about the story of your daughter Emma's stroke?

Dee: [02:11] We noticed that Emma wasn't meeting major milestones, mainly crawling. And actually it was earlier than that, it was about when she was five months old. She wasn't reaching with both hands. I had noticed when I took her to mother's group that she wouldn't reach for the toys with both hands, and then she was significantly delayed in her development. So when she didn't crawl after seeing a number of GPs, I persistently, vigorously actually, pursued referrals and things like that.

And then eventually my maternal child health nurse heard us and referred us to the paediatric physio in Ballarat, and she advised us to see a paediatrician straight away because she knew something was wrong with Emma. And then after she had an MRI at 10 months old, we were called into her paediatrician's office and he diagnosed her with either a stroke or a brain tumour, he wasn't sure what she had. So we were referred to neurology at the Royal Children's Hospital where we saw Dr Patrick Lo and he confirmed that she'd had a stroke in utero.

Chris: [03:35] Okay. That took quite a while to get that diagnosis, it sounds like.

Dee: [03:38] Yeah well, I actually took her to the doctors when she was five months old because I realised that other babies were starting to roll, or tummy time they were really strong and Emma wasn't. But I was just told that she was a big baby and I was basically made to feel like I was just paranoid as a first-time mum. And so because of that delayed diagnosis Emma missed out on really important early intervention opportunities.

Chris: [04:08] When you finally did get that diagnosis, was that a relief to finally know or, yeah, did it help?

Dee: [04:14] It was a bit bittersweet, I guess. We were told to pack a bag to come to the neurology appointment in case it was a tumour and she would stay there and have treatment, they weren't sure yet. So it was a relief that she didn't have a brain tumour, but it was also confronting that she'd had a stroke especially when I thought that you had to be older to have a stroke and that she was in my tummy at the time. It comes with a lot of emotions, I think. First of all I felt guilty, I thought I've caused this. What did I do wrong as her mother? I couldn't carry her safely into the world. Yeah, it is a relief but it also carries a lot of other emotions with it.

Chris: [04:58] Well, I might actually go over to Mark now who, as I mentioned, you're a neurologist and you've been researching paediatric stroke for over 10 years, is that correct?

Mark: [05:06] Yeah, it's probably closer to 20 years actually.

Chris: [05:09] Okay. Well, can you tell us a bit, how common is stroke in babies and young children?

Mark: [05:15] We divide stroke up into... when we're researching stroke we divide it into what we call perinatal stroke, which is stroke affecting babies up to one month of age, and then childhood stroke which is from one month of age up to age 18. If we start with the first group, perinatal stroke, stroke in babies, it's actually more common than people think. And there's some recent research from Canada where they established a statewide registry in Alberta in Canada, and they found that stroke affects one in 1,200 babies. That's really quite surprising, that's not uncommon at all.

In childhood stroke, the rates are lower than in perinatal stroke and they're estimated to be somewhere between one in 8,000 to one in 40,000 children. But one of the problems is that we don't actually know how common stroke is in the Australian population, because we don't have a national registry and that's one of the key areas of focus moving forward.

Chris: [06:20] And do we know what causes these strokes? Are they the same for the perinatal stroke and for the childhood stroke?

Mark: [06:27] They're different, which is I suppose one of the main reasons that we separate the two age groups from each other. In perinatal stroke the causes of stroke are poorly understood. There are factors that can occur during the pregnancy, such as high blood pressure, that are associated with increased risk of stroke. There are factors during the delivery, which include the need for what we call instrumental delivery. That would be a forceps or a thing called the ventouse, which is like a suction cup, or a ceasarean if the baby is in poor condition, so they're not breathing and they're what we call being "flat at birth" and may need some resuscitation.

The feeling is that if the baby, if there's some complications around the delivery or during the pregnancy, that they are factors that we recognise occur more commonly in babies with stroke compared to babies who do not have stroke. And then in childhood, our understanding is somewhat better. Although when we talk about causes of stroke we talk about risk factors which are conditions that you have that may predispose you to stroke. In adults that's things like having high blood pressure or high cholesterol, diabetes.

In children, and probably half of children are healthy prior to stroke, so it comes completely out of the blue. And when you investigate the children, we find that approximately half of children who have stroke, the stroke is due to an abnormality of the blood vessels supplying the brain, and that can be due to inflammation of the arteries or other conditions which are felt to be genetic. Another group that are at high risk of stroke are children who have heart problems, so what we call congenital heart defects, which in lay terms would be a hole in the heart. But children who have those problems with the structure of the heart are at a higher risk of stroke because it's easier for clots to travel to the brain.

And then in children who have strokes where they're due to bleeding, so we traditionally divide stroke into blockages of arteries, which we call ischaemic stroke, and bursting of the arteries, which we call haemorrhagic stroke. And in children who have haemorrhagic stroke due to bleeds, abnormal blood vessels such as things called arteriovenous malformations, which are felt to be developmental, are the commonest cause of bleeding in children with haemorrhagic stroke.

Chris: [08:58] Now, Kylie, I believe your daughter Anika also had a stroke as a baby, and I imagine you had some similar experiences to Dee. What were the first signs for you that something was wrong?

Kylie: [09:08] Anika was a day old when we noticed a little movement that we didn't think was quite right. She had a really tightly grasped fist and her hand and arm would move very rhythmically in almost like a beat. We raised that with a midwife that was looking after us whilst we were still in hospital and she shrugged it off a little bit and just, "You're being a little bit of a nervous new mum." And we were getting ready to go home and we were giving her her first bath and she had a seizure. She required assistance to breathe, and the wheels got put into motion pretty quickly. She was rushed to the special care unit at the hospital we were in and that's where everything started for us.

We had lumbar punctures, MRIs and at 36 hours of age we were called into a conference centre and said, "Your baby has suffered a significant stroke, which has affected the bulk of the left-hand side of her brain." And that was about it, really, there was nothing else after that. We weren't given any information or assistance in terms of what to from there. It was basically monitoring for a couple of days and then we were sent home. It was really quite frightening because again similarly, to Dee, I thought my job as a mum carrying my baby was to protect that baby and then here it was I find out that this had happened to her while she was still on the inside and it's just, it's absolutely devastating.

Chris: [10:50] I guess this is where we're talking about this lack of information, lack of knowledge of what needs to be done and what should be expected. Mark, what treatment can children receive after having a stroke?

Mark: [11:02] In children who have stroke there are a number of different types of treatment. The first approach, which is where there's been major advances in adults affected by stroke, is to give treatments that minimise the extent of injury to the brain. So if you've got a stroke where there's a clot blocking the artery, there are medications that you can give that dissolve the clot, or if that is ineffective they can actually use a device which they pass into the artery and literally pull the clot out. That's called clot retrieval.

They're treatments that can be offered at the time the stroke occurs. If you have bleeding in the brain, you may need emergency surgery to reduce the pressure from the clot. And then down the track, once you've identified the cause of the stroke, then there are treatments that can be used to prevent further strokes from occurring and they're called secondary preventative treatments.

In babies there are currently no treatments for a stroke, although there is some research into using a treatment which is called erythropoietin, also known as EPO, which may minimise the extent of injury in the brain but that is still under investigation. So in babies the treatment really is to help the child reach their full potential by early intervention where therapists will actually be working with the families to help the child recover.

Chris: [12:28] Okay, now that is something that I am quite interested to hear a bit more about. Kylie and Dee, I guess this is a question for both of you. Could you tell us what early intervention looked like for Anika and Emma?

Dee: [12:41] For Emma, it involved a really intensive physio, occupational therapy and eventually a speech therapy, but it was four or five appointments a week in the initial stages which was incredible really. And my life went from going to mother's group and having coffee and catching up with the girls to not being able to fit in much of that recreation time at all. Yeah, it was full swing for Emma and it continues to this day. She's five years old now and we have about two to three appointments a week. Emma's stroke was really quite severe, so she's had some pretty significant impacts as a result of that. Yeah, the therapy continues, it's lifelong for Emma.

Chris: [13:36] Okay. And Kylie?

Kylie: [13:38] Yes, I guess a little similarity, we started therapies at six weeks of age, and this comes back to the early intervention being so critical. We started off with physiotherapy and that was numerous times a week. As she progressed a little, occupational therapy ticked in, and on her first birthday she had her first speech therapy session. It's been as Dee says, it's just been a whirlwind of fitting all these additional things into your child's routine and your routine, but more so significantly for Anika as we've progressed along, and she's three and a half now and we're starting to see some effects of the stroke that aren't necessarily physical. A part of her brain that was damaged due to the stroke controls emotional regulation and behaviour. And so we're starting to work with a behavioural psychologist around some of those things, because sometimes that unseen disability can be just as daunting as the physical stuff.

Chris: [14:53] I imagine that you've learnt a lot about stroke in the brain in this process.

Kylie: [14:57] Yeah, probably far more than I think anyone would fathom having to especially when you're referring to a child.

Chris: [15:05] And do you see that the treatments she's getting, like the therapy she's getting, do you see them helping?

Kylie: [15:10] Definitely. In Anika's case we went from having a child who had no concept of the right side of their body. I remember someone referring to the fact that she had a neglected right hand side and I got really upset about that because I'm thinking the term neglect has quite a nasty connotation in some circles, but it just purely meant that the brain was neglecting to recognise the fact that she had that right side. All of the work that we've done there in terms of the OT and the physio, she now recognises that she has a right hand and a right foot and she uses those well but they will always be helper limbs.

Chris: [15:58] And Dee, are you still seeing a similar thing with Emma then?

Dee: [15:59] Yeah. With Emma, she has had amazing advances, but she requires Botox treatment in the right-hand side of her body. So due to spasticity in the limb she requires Botox to function on that side. And yeah, Emma has experienced quite a significant impact, she wears an ankle-foot orthotic as well on her leg. But I have to say we always have the attitude that impossible is nothing and it's really something that we've adopted early on and she shows us that every single day, just when we think that maybe her body is not going to be able to do something because you hear different opinions from so many people, she does it. She's incredible really, and a bit like Anika went from complete neglect of the right side to now engaging that right side unconsciously. Yeah, it's really rewarding to watch her develop.

Chris: [17:10] That does sound amazing. Now, just a couple of notes for our listeners. Dee mentioned there an ankle-foot orthotic, that's a kind of plastic brace that supports the muscles and helps align the joints. And she also mentioned spasticity, which Emma is experiencing on her right-hand side. Now spasticity is a stiffness and tightness caused by high muscle tone or activity. And if you want to find out more, we have an earlier podcast on that topic called "How spasticity can affect you".

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Chris: [18:06] Now, Mark, the treatments that they're using or the therapies that it sounds like Anika and Emma are getting, sound very similar to a lot of the stuff that adult stroke survivors experience. Does early intervention for children, is it following basically the same principles of neuroplasticity as we see in adult rehabilitation?

Mark: [18:25] Yes, absolutely. Neuroplasticity is actually a normal process in the developing brain, so it's particularly relevant to children. The difference between normal neuroplasticity and having a stroke is that what happens with a stroke is that it interrupts that normal developmental trajectory, and then the brain has to literally reorganise itself if one part of the brain has been damaged. With the early intervention, the focus of early intervention depends on the stage at which the stroke occurs.

In babies, the focus in the first 12 months of life is primarily on their physical development because anyone who's had a baby knows that that's what you see with normal development, most of the advances in the first year are of a physical nature. And then in the second and the third year, then you start to see more complex movements of the hands and then speech starts to develop in the third year of life, and then once you reach school age then there's higher functions of the brain is learning. And that's the things that both Dee and Kylie were talking about with their children about emotions and behaviour. Those things often don't become apparent until children reach school age.

Chris: [19:42] Now, I suppose we're looking at a term like early intervention, that is clearly something that is a bit different to what it's called with adults. And there does seem to be some other terminology as well. One term that I've heard used in this context is cerebral palsy. How does that relate to stroke?

Mark: [20:00] Cerebral palsy is a term that refers to physical problems which affect movement, posture and tone. That's the most obvious consequence of stroke, is that it affects children physically. And most people have heard of the term cerebral palsy, but they don't know that there are different types of cerebral palsy, and one of those is called hemiplegic cerebral palsy. "Hemi" means half and "plegia" means weakness. And stroke is actually the commonest cause of hemiplegic cerebral palsy in children that are born at full term.

But I think the key point is that the physical consequences of cerebral palsy is only one aspect of the problem, and I think the reason why the Our Family's Stroke Journey is a very important document is because it actually does talk about that journey that the families are on, and that the areas that we need to focus on with the early intervention depend on the age of the child.

Chris: [21:04] Now this is a good time I think to talk about this information and the support that is available. I'll come back to you, Dee, how much support did you find there was, or how little support did you find there was for parents of children with stroke?

Dee: [21:20] Yeah. Little support would probably be the best way to describe it. There wasn't any support at all really, initially, until I connected with Kylie through the Stroke Foundation, and we created Little Stroke Warriors. I don't recall there being any support, I really relied on my daughter's physiotherapist at the time for information and some sort of navigation of the new path that we were on. Other than that we weren't referred to any social worker, no advice about the emotional side of the life change I guess, and what emotions you might experience with that. And it was isolating, I felt very lonely and I felt like I was the only mum in Australia at the time whose child had gone through what Emma had gone through.

Obviously the Our Family's Stroke Journey resource is really welcomed, because Kylie and I, we know how life-changing that will be to have in the hands of parents when their child is diagnosed to give them some sort of navigation. I didn't even know that Emma had cerebral palsy or that there were different levels of cerebral palsy until we were six to 12 months into the journey. Yeah, that sort of says it all really. There's people around you throwing around medical jargon and often not actually speaking directly to you and yeah, that can be quite overwhelming. The resource is going to be incredible, I think. I would have loved to have had it when Emma was diagnosed.

Chris: [23:15] Kylie, I'm interested in this, how you and Dee got in touch and then what you set up Little Stroke Warriors to do. Could you tell us a bit about that?

Kylie: [23:25] Yeah, sure. As Dee said it's quite an isolating experience when you get your diagnosis, because our family too were really made to feel like it was just us. And we took our newborn baby home not knowing whether there were going to be any more seizures or what was to come. I think I battled through the first three or four months and increasingly just felt so cranky about the situation and not knowing where to turn for help. And I recall one evening during a feed or something, scrolling through the... must've been through the Stroke Foundation's Facebook page, and maybe had posted a question or something and next thing there was Dee.

And I thought, "Wow, I'm not alone." And that was just a really pivotal moment, because Dee and I were then able to chat back and forth and pass messages. And I think as the weeks and months wore on of us tick-tacking back and forth, where you mutually had this thought of, "Well, it can't just be us. If there's us there's others, and why don't we set about trying to find them?" And we set up a Little Stroke Warriors Australia Facebook page, and there's a quote in a movie, "If you build it they will come," and they did. We just started finding family after family, and before you knew it we had this beautiful little community of families who were all battling the same thing. And they were asking questions of each other, and answering and giving support and sharing the most amazing stories of their children.

And I think Dee and I thought, "Wow, isn't this incredible?" But the fire was really set in our bellies I think, and we still thought that whilst this community is fantastic and it provides an emotional support, there has to be something more, we as a country can do better. And we decided to front up in Melbourne and go and visit the guys at the Stroke Foundation and tell our story, and half-expecting for them to say, "Ladies, that's lovely, off you go.”

And before we knew it, we were having some really serious meaningful conversations about what this journey meant for us, but also what it meant for the community and what was missing in our children's treatment and follow-up care. From that, I think we've had so many incredible experiences but they really are about to culminate in the release of the Our Family's Stroke Journey resource. And that has just been an incredible coup I guess for our families but more so for the families to come, I think.

Chris: [26:21] Now, you developed this resource along with Katherine David, or KD as she's known at the Stroke Foundation. And this is part of a childhood stroke project, I believe. Now KD, could you tell us a bit about... from your perspective, how this childhood stroke project came about?

KD: [26:38] Thanks Chris. We had a great booklet about stroke in adults, but we knew we needed to do more in terms of information about stroke in kids. As Dee and Kylie were saying earlier, it was around this time that they came knocking on our door. They came to see us and they're obviously wonderful and passionate advocates in the space. They were able to connect us with Little Stroke Warriors ,and we went on the path together of developing Our Family's Stroke Journey.

Chris: [27:12] Okay. What's in Our Family's Stroke Journey?

KD: [27:12] Our Family's Stroke Journey is a complete guide for parents after a child's stroke. It answers those questions in the early days that parents have about stroke in kids, and how stroke can affect their child, as well as treatment and care their child will receive. It also, really importantly, provides a roadmap for recovery by giving parents the information they need about life after their child's stroke, and connects parents and families with the right supports and services.

Chris: [27:43] Okay. And in the resource it also has a lot of, I suppose, little personal stories from many parents of kids with stroke, obviously Dee and Kylie but other members of Little Stroke Warriors. What's it been like hearing those stories and meeting those people and getting them together?

KD: [28:04] It has been incredibly inspiring for us at the Stroke Foundation to work with Little Stroke Warriors and lots of other families that have been affected by stroke in kids. There are some really amazing families out there who were clearly very, very passionate about supporting other families. And from the Stroke Foundation's perspective we are very grateful for the opportunity to learn from these families and hear their stories. We found the willingness of families to share their lived experience to help other families has been paramount in this project. We've also had lots of health professionals right across Australia who have very generously given their time and wisdom and have supported this project, so we want to thank everyone involved.

Chris: [28:58] And Kylie, what do you hope that people get out of this Our Family's Stroke Journey resource?

Kylie: [29:10] I hope they get a sense of hope. I hope they get a bit of clarity around the terminology that will be thrown at them in the early days, it's one of the things that was the hardest to deal with was having zero comprehension of what some of these doctors were talking at me about. I think that having parents be a little bit educated about the situation prior to going to some of their big meetings will be really important for them. And I think it's just being able to provide a sense of, again, a sense of community and a sense of you're not on your own. We all know that every stroke is different and every child will be different, but hopefully through this resource parents will have a little bit of a guide and a "what next" for their child. Yeah, I guess that's it for me, it's really just that feeling of hope and of not being in the dark.

Chris: [30:07] Yeah. And Dee, do you think there is, I guess, other information there for the parents but also for other people who may be involved with childhood stroke as well, even some of the health professionals you've encountered who may not have much knowledge about it?

Dee: [30:21] Yeah, absolutely. I think the resource... Katherine has led this and she has been incredible to work with. And I don't think she's missed a beat really as far as being able to inform. And I believe that definitely allied health professionals, maybe even teachers, people can get a sense of what the journey's like and what the family's going through. And stroke is a unique diagnosis and I think it's important to realise that childhood stroke is within its own medical condition. And I think a lot of the time kids can get put in a box, so to speak. And I think if you have a document that explains what's going on it might give people a bit more empathy and compassion and I guess a better understanding of the child as well, and what the parents might be going through.

Because as a parent it is a journey of grief and loss as well, and it's very hard to admit that sometimes because you're so grateful that your child survived and that they're here and they amaze you every single day. But at the same time there's a lot of blame on yourself as a parent. Yeah, I think it alleviates a lot of those emotions and it pulls down those barriers as well so I'm very, very grateful for the resource. And I just wanted to say thank you to Katherine, the Stroke Foundation, and Dr Mark Mackay as well for his contribution and expertise in developing the resource. It's brilliant.

Chris: [32:11] Mark, what are you hoping that people get out of the Our Family's Stroke Journey resource?

Mark: [32:16] I think that for me the key message is that knowledge is power, and that this is a really comprehensive document that provides information for families about the causes and consequences of stroke and the risk for recurrent events. Which I think is very important because the difficulty is that there's very little appropriate information that parents can access on the internet, so this really has all that information packed in. The second thing that I would echo Kylie's comments that this really gives the families a message that they're not alone. And I think the strengths of the document is that it approaches our families' needs from a national perspective, so the information there about the supports that are available are really provided across every state of the nation and I think that's actually really important. So that where parents can access resources, access help from health professionals, but also information. I think it's just fantastic.

Chris: [33:26] Great. Okay, KD, can you tell us how can people get a copy of Our Family's Stroke Journey?

KD: [33:29] People can find Our Family's Stroke Journey on our website, the Stroke Foundation website, or they can give us a call on StrokeLine and we'll send them a printed copy. We're also working closely with children's hospitals right across Australia to make sure parents receive a copy of Our Family's Stroke Journey early after their child's diagnosis.

Chris: [33:50] Right. You mentioned StrokeLine there, what other help is available through StrokeLine?

KD: [33:55] Our health professionals on StrokeLine are available to provide information, to provide advice and also support. People can get in touch with us at any stage. This might be quite early on after their child's stroke or it could be later down the track. Parents ask us lots of different questions on StrokeLine, but more commonly parents want to know about how to navigate the hospital system, and also accessing early intervention and rehab, the different types of therapies that are available for kids, tips on getting back to school and also how to connect with other parents and families through groups like Little Stroke Warriors. So we'd certainly love to hear from anyone who has a question or needs support, please do get in touch with us.

Chris: [34:46] Fantastic. And Kylie, I imagine you'd like parents to get in touch with Little Stroke Warriors if they're in a similar situation. How can people contact you?

Kylie: [34:56] Absolutely. So we have a Facebook page, we actually have two. We have Little Stroke Warriors Australia, which is more of a public page where we can share information and resources, but then we have a Little Stroke Warriors Australia Support Group, and that's a pretty heavily guarded little group. We make sure that we're only allowing parents and carers into that site. There are a couple of questions to be answered but you can most certainly find us on Facebook. And either Dee or I are usually there to answer a question if there's one come through. Yeah, reach out we're more than happy to have a chat.

Chris: [35:37] Fantastic and Dee, you'll make them welcome and give them the help they need?

Dee: [35:41] Yeah, absolutely. The group is very supportive of one another. Usually now Kylie and I don't even have the chance to respond because so many people jump on and they respond to people straight away. The community is safe and it's respectful and it's really pivotal to a parent's journey, or carer. We also welcome family members as well, and immediate family members, so we find that helpful. Grandparents join the group generally. We know stroke affects the whole family, not just the parents. So it offers them some understanding of what parents are going through and also gives them a chance to see these amazing children thrive, so again, it provides a lot of hope.

Chris: [36:34] Well, thank you very much. Now, remember too that StrokeLine if you need to contact that you can reach them on 1800 787 653, that's 1800 S-T-R-O-K-E, or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors. Also a reminder that Our Family's Stroke Journey will also be available through the Stroke Foundation website, which is strokefoundation.org.au.

Well, that is all we have time for today. If you like what you've heard, please take the time to give us a good rating and review on your podcast app, as that helps lift us up in the search rankings so that other people can find our podcast. And I want to thank again our guests, Kylie Facer and Dee Honeychurch from Little Stroke Warriors Australia, Associate Professor Mark Mackay from the Royal Children's Hospital, Melbourne, and Katherine David from the Stroke Foundation.

Kylie: Thank you.

Dee: Thank you.

Mark: Thank you.

KD: Thanks, Chris.

Announcer: [37:25] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.

Childhood stroke

Episode 26, 2 September 2020

Many people are unaware that children and babies can have strokes, and parents are often left with nowhere to turn. Fortunately that situation is changing, with support groups for parents and the new Our Family’s Stroke Journey resource from the Stroke Foundation. In this podcast, we talk about what it’s like to have a baby or child who’s had a stroke, what can cause the stroke and what can be done about it, and what help is available.

We speak to Dee Honeychurch and Kylie Facer, mothers of children who’ve had strokes and co-founders of the support group Little Stroke Warriors Australia; paediatric neurologist Associate Professor Mark Mackay from the Royal Children’s Hospital Melbourne and member of the Stroke Foundation’s Clinical Council; and Katherine David from the Stroke Foundation, who managed the development of the resource Our Family’s Stroke Journey.

Download Our Family's Stroke Journey (PDF 2.15 MB)

 

Podcast transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals. You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat, and beat stroke.

Chris: [00:44] Many people are unaware that children and babies can have strokes the same as adults, and parents are often left in a position where they don't know what help is available or even who to ask. Fortunately, that situation is changing, with support groups for parents of a kid who's had a stroke and a new information resource from the Stroke Foundation, and most recently the announcement of government funding for research into treatments for stroke in babies and children.

So in this podcast we're going to talk about what it's like to have a baby or child who's had a stroke, what can cause the stroke and what can be done about it, and what help is available. At the moment we are still in the midst of the COVID-19 pandemic so we're all recording remotely, but on the line we have Dee Honeychurch and Kylie Facer, co-founders of the support group Little Stroke Warriors Australia, and mothers of Emma and Anika respectively. Hello, Dee and Kylie.

Dee: Hi.

Kylie: Hi, how are you?

Chris: We're also speaking to paediatric neurologist Associate Professor Mark Mackay, from the Royal Children's Hospital, Melbourne. And Mark is also a member of the Stroke Foundation's Clinical Council. Welcome, Mark.

Mark: Thanks very much, happy to be here.

Chris: And later on we'll talk to Katherine David from the Stroke Foundation, who's worked with Dee and Kylie, and with Mark I believe, to develop the resource for parents called Our Family's Stroke Journey. Hi Katherine, looking forward to it.

KD: Hi Chris, thanks for having me.

Chris: [02:03] First though, I do want to start with you Dee and ask about your family's experience. Could you tell us a bit about the story of your daughter Emma's stroke?

Dee: [02:11] We noticed that Emma wasn't meeting major milestones, mainly crawling. And actually it was earlier than that, it was about when she was five months old. She wasn't reaching with both hands. I had noticed when I took her to mother's group that she wouldn't reach for the toys with both hands, and then she was significantly delayed in her development. So when she didn't crawl after seeing a number of GPs, I persistently, vigorously actually, pursued referrals and things like that.

And then eventually my maternal child health nurse heard us and referred us to the paediatric physio in Ballarat, and she advised us to see a paediatrician straight away because she knew something was wrong with Emma. And then after she had an MRI at 10 months old, we were called into her paediatrician's office and he diagnosed her with either a stroke or a brain tumour, he wasn't sure what she had. So we were referred to neurology at the Royal Children's Hospital where we saw Dr Patrick Lo and he confirmed that she'd had a stroke in utero.

Chris: [03:35] Okay. That took quite a while to get that diagnosis, it sounds like.

Dee: [03:38] Yeah well, I actually took her to the doctors when she was five months old because I realised that other babies were starting to roll, or tummy time they were really strong and Emma wasn't. But I was just told that she was a big baby and I was basically made to feel like I was just paranoid as a first-time mum. And so because of that delayed diagnosis Emma missed out on really important early intervention opportunities.

Chris: [04:08] When you finally did get that diagnosis, was that a relief to finally know or, yeah, did it help?

Dee: [04:14] It was a bit bittersweet, I guess. We were told to pack a bag to come to the neurology appointment in case it was a tumour and she would stay there and have treatment, they weren't sure yet. So it was a relief that she didn't have a brain tumour, but it was also confronting that she'd had a stroke especially when I thought that you had to be older to have a stroke and that she was in my tummy at the time. It comes with a lot of emotions, I think. First of all I felt guilty, I thought I've caused this. What did I do wrong as her mother? I couldn't carry her safely into the world. Yeah, it is a relief but it also carries a lot of other emotions with it.

Chris: [04:58] Well, I might actually go over to Mark now who, as I mentioned, you're a neurologist and you've been researching paediatric stroke for over 10 years, is that correct?

Mark: [05:06] Yeah, it's probably closer to 20 years actually.

Chris: [05:09] Okay. Well, can you tell us a bit, how common is stroke in babies and young children?

Mark: [05:15] We divide stroke up into... when we're researching stroke we divide it into what we call perinatal stroke, which is stroke affecting babies up to one month of age, and then childhood stroke which is from one month of age up to age 18. If we start with the first group, perinatal stroke, stroke in babies, it's actually more common than people think. And there's some recent research from Canada where they established a statewide registry in Alberta in Canada, and they found that stroke affects one in 1,200 babies. That's really quite surprising, that's not uncommon at all.

In childhood stroke, the rates are lower than in perinatal stroke and they're estimated to be somewhere between one in 8,000 to one in 40,000 children. But one of the problems is that we don't actually know how common stroke is in the Australian population, because we don't have a national registry and that's one of the key areas of focus moving forward.

Chris: [06:20] And do we know what causes these strokes? Are they the same for the perinatal stroke and for the childhood stroke?

Mark: [06:27] They're different, which is I suppose one of the main reasons that we separate the two age groups from each other. In perinatal stroke the causes of stroke are poorly understood. There are factors that can occur during the pregnancy, such as high blood pressure, that are associated with increased risk of stroke. There are factors during the delivery, which include the need for what we call instrumental delivery. That would be a forceps or a thing called the ventouse, which is like a suction cup, or a ceasarean if the baby is in poor condition, so they're not breathing and they're what we call being "flat at birth" and may need some resuscitation.

The feeling is that if the baby, if there's some complications around the delivery or during the pregnancy, that they are factors that we recognise occur more commonly in babies with stroke compared to babies who do not have stroke. And then in childhood, our understanding is somewhat better. Although when we talk about causes of stroke we talk about risk factors which are conditions that you have that may predispose you to stroke. In adults that's things like having high blood pressure or high cholesterol, diabetes.

In children, and probably half of children are healthy prior to stroke, so it comes completely out of the blue. And when you investigate the children, we find that approximately half of children who have stroke, the stroke is due to an abnormality of the blood vessels supplying the brain, and that can be due to inflammation of the arteries or other conditions which are felt to be genetic. Another group that are at high risk of stroke are children who have heart problems, so what we call congenital heart defects, which in lay terms would be a hole in the heart. But children who have those problems with the structure of the heart are at a higher risk of stroke because it's easier for clots to travel to the brain.

And then in children who have strokes where they're due to bleeding, so we traditionally divide stroke into blockages of arteries, which we call ischaemic stroke, and bursting of the arteries, which we call haemorrhagic stroke. And in children who have haemorrhagic stroke due to bleeds, abnormal blood vessels such as things called arteriovenous malformations, which are felt to be developmental, are the commonest cause of bleeding in children with haemorrhagic stroke.

Chris: [08:58] Now, Kylie, I believe your daughter Anika also had a stroke as a baby, and I imagine you had some similar experiences to Dee. What were the first signs for you that something was wrong?

Kylie: [09:08] Anika was a day old when we noticed a little movement that we didn't think was quite right. She had a really tightly grasped fist and her hand and arm would move very rhythmically in almost like a beat. We raised that with a midwife that was looking after us whilst we were still in hospital and she shrugged it off a little bit and just, "You're being a little bit of a nervous new mum." And we were getting ready to go home and we were giving her her first bath and she had a seizure. She required assistance to breathe, and the wheels got put into motion pretty quickly. She was rushed to the special care unit at the hospital we were in and that's where everything started for us.

We had lumbar punctures, MRIs and at 36 hours of age we were called into a conference centre and said, "Your baby has suffered a significant stroke, which has affected the bulk of the left-hand side of her brain." And that was about it, really, there was nothing else after that. We weren't given any information or assistance in terms of what to from there. It was basically monitoring for a couple of days and then we were sent home. It was really quite frightening because again similarly, to Dee, I thought my job as a mum carrying my baby was to protect that baby and then here it was I find out that this had happened to her while she was still on the inside and it's just, it's absolutely devastating.

Chris: [10:50] I guess this is where we're talking about this lack of information, lack of knowledge of what needs to be done and what should be expected. Mark, what treatment can children receive after having a stroke?

Mark: [11:02] In children who have stroke there are a number of different types of treatment. The first approach, which is where there's been major advances in adults affected by stroke, is to give treatments that minimise the extent of injury to the brain. So if you've got a stroke where there's a clot blocking the artery, there are medications that you can give that dissolve the clot, or if that is ineffective they can actually use a device which they pass into the artery and literally pull the clot out. That's called clot retrieval.

They're treatments that can be offered at the time the stroke occurs. If you have bleeding in the brain, you may need emergency surgery to reduce the pressure from the clot. And then down the track, once you've identified the cause of the stroke, then there are treatments that can be used to prevent further strokes from occurring and they're called secondary preventative treatments.

In babies there are currently no treatments for a stroke, although there is some research into using a treatment which is called erythropoietin, also known as EPO, which may minimise the extent of injury in the brain but that is still under investigation. So in babies the treatment really is to help the child reach their full potential by early intervention where therapists will actually be working with the families to help the child recover.

Chris: [12:28] Okay, now that is something that I am quite interested to hear a bit more about. Kylie and Dee, I guess this is a question for both of you. Could you tell us what early intervention looked like for Anika and Emma?

Dee: [12:41] For Emma, it involved a really intensive physio, occupational therapy and eventually a speech therapy, but it was four or five appointments a week in the initial stages which was incredible really. And my life went from going to mother's group and having coffee and catching up with the girls to not being able to fit in much of that recreation time at all. Yeah, it was full swing for Emma and it continues to this day. She's five years old now and we have about two to three appointments a week. Emma's stroke was really quite severe, so she's had some pretty significant impacts as a result of that. Yeah, the therapy continues, it's lifelong for Emma.

Chris: [13:36] Okay. And Kylie?

Kylie: [13:38] Yes, I guess a little similarity, we started therapies at six weeks of age, and this comes back to the early intervention being so critical. We started off with physiotherapy and that was numerous times a week. As she progressed a little, occupational therapy ticked in, and on her first birthday she had her first speech therapy session. It's been as Dee says, it's just been a whirlwind of fitting all these additional things into your child's routine and your routine, but more so significantly for Anika as we've progressed along, and she's three and a half now and we're starting to see some effects of the stroke that aren't necessarily physical. A part of her brain that was damaged due to the stroke controls emotional regulation and behaviour. And so we're starting to work with a behavioural psychologist around some of those things, because sometimes that unseen disability can be just as daunting as the physical stuff.

Chris: [14:53] I imagine that you've learnt a lot about stroke in the brain in this process.

Kylie: [14:57] Yeah, probably far more than I think anyone would fathom having to especially when you're referring to a child.

Chris: [15:05] And do you see that the treatments she's getting, like the therapy she's getting, do you see them helping?

Kylie: [15:10] Definitely. In Anika's case we went from having a child who had no concept of the right side of their body. I remember someone referring to the fact that she had a neglected right hand side and I got really upset about that because I'm thinking the term neglect has quite a nasty connotation in some circles, but it just purely meant that the brain was neglecting to recognise the fact that she had that right side. All of the work that we've done there in terms of the OT and the physio, she now recognises that she has a right hand and a right foot and she uses those well but they will always be helper limbs.

Chris: [15:58] And Dee, are you still seeing a similar thing with Emma then?

Dee: [15:59] Yeah. With Emma, she has had amazing advances, but she requires Botox treatment in the right-hand side of her body. So due to spasticity in the limb she requires Botox to function on that side. And yeah, Emma has experienced quite a significant impact, she wears an ankle-foot orthotic as well on her leg. But I have to say we always have the attitude that impossible is nothing and it's really something that we've adopted early on and she shows us that every single day, just when we think that maybe her body is not going to be able to do something because you hear different opinions from so many people, she does it. She's incredible really, and a bit like Anika went from complete neglect of the right side to now engaging that right side unconsciously. Yeah, it's really rewarding to watch her develop.

Chris: [17:10] That does sound amazing. Now, just a couple of notes for our listeners. Dee mentioned there an ankle-foot orthotic, that's a kind of plastic brace that supports the muscles and helps align the joints. And she also mentioned spasticity, which Emma is experiencing on her right-hand side. Now spasticity is a stiffness and tightness caused by high muscle tone or activity. And if you want to find out more, we have an earlier podcast on that topic called "How spasticity can affect you".

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Chris: [18:06] Now, Mark, the treatments that they're using or the therapies that it sounds like Anika and Emma are getting, sound very similar to a lot of the stuff that adult stroke survivors experience. Does early intervention for children, is it following basically the same principles of neuroplasticity as we see in adult rehabilitation?

Mark: [18:25] Yes, absolutely. Neuroplasticity is actually a normal process in the developing brain, so it's particularly relevant to children. The difference between normal neuroplasticity and having a stroke is that what happens with a stroke is that it interrupts that normal developmental trajectory, and then the brain has to literally reorganise itself if one part of the brain has been damaged. With the early intervention, the focus of early intervention depends on the stage at which the stroke occurs.

In babies, the focus in the first 12 months of life is primarily on their physical development because anyone who's had a baby knows that that's what you see with normal development, most of the advances in the first year are of a physical nature. And then in the second and the third year, then you start to see more complex movements of the hands and then speech starts to develop in the third year of life, and then once you reach school age then there's higher functions of the brain is learning. And that's the things that both Dee and Kylie were talking about with their children about emotions and behaviour. Those things often don't become apparent until children reach school age.

Chris: [19:42] Now, I suppose we're looking at a term like early intervention, that is clearly something that is a bit different to what it's called with adults. And there does seem to be some other terminology as well. One term that I've heard used in this context is cerebral palsy. How does that relate to stroke?

Mark: [20:00] Cerebral palsy is a term that refers to physical problems which affect movement, posture and tone. That's the most obvious consequence of stroke, is that it affects children physically. And most people have heard of the term cerebral palsy, but they don't know that there are different types of cerebral palsy, and one of those is called hemiplegic cerebral palsy. "Hemi" means half and "plegia" means weakness. And stroke is actually the commonest cause of hemiplegic cerebral palsy in children that are born at full term.

But I think the key point is that the physical consequences of cerebral palsy is only one aspect of the problem, and I think the reason why the Our Family's Stroke Journey is a very important document is because it actually does talk about that journey that the families are on, and that the areas that we need to focus on with the early intervention depend on the age of the child.

Chris: [21:04] Now this is a good time I think to talk about this information and the support that is available. I'll come back to you, Dee, how much support did you find there was, or how little support did you find there was for parents of children with stroke?

Dee: [21:20] Yeah. Little support would probably be the best way to describe it. There wasn't any support at all really, initially, until I connected with Kylie through the Stroke Foundation, and we created Little Stroke Warriors. I don't recall there being any support, I really relied on my daughter's physiotherapist at the time for information and some sort of navigation of the new path that we were on. Other than that we weren't referred to any social worker, no advice about the emotional side of the life change I guess, and what emotions you might experience with that. And it was isolating, I felt very lonely and I felt like I was the only mum in Australia at the time whose child had gone through what Emma had gone through.

Obviously the Our Family's Stroke Journey resource is really welcomed, because Kylie and I, we know how life-changing that will be to have in the hands of parents when their child is diagnosed to give them some sort of navigation. I didn't even know that Emma had cerebral palsy or that there were different levels of cerebral palsy until we were six to 12 months into the journey. Yeah, that sort of says it all really. There's people around you throwing around medical jargon and often not actually speaking directly to you and yeah, that can be quite overwhelming. The resource is going to be incredible, I think. I would have loved to have had it when Emma was diagnosed.

Chris: [23:15] Kylie, I'm interested in this, how you and Dee got in touch and then what you set up Little Stroke Warriors to do. Could you tell us a bit about that?

Kylie: [23:25] Yeah, sure. As Dee said it's quite an isolating experience when you get your diagnosis, because our family too were really made to feel like it was just us. And we took our newborn baby home not knowing whether there were going to be any more seizures or what was to come. I think I battled through the first three or four months and increasingly just felt so cranky about the situation and not knowing where to turn for help. And I recall one evening during a feed or something, scrolling through the... must've been through the Stroke Foundation's Facebook page, and maybe had posted a question or something and next thing there was Dee.

And I thought, "Wow, I'm not alone." And that was just a really pivotal moment, because Dee and I were then able to chat back and forth and pass messages. And I think as the weeks and months wore on of us tick-tacking back and forth, where you mutually had this thought of, "Well, it can't just be us. If there's us there's others, and why don't we set about trying to find them?" And we set up a Little Stroke Warriors Australia Facebook page, and there's a quote in a movie, "If you build it they will come," and they did. We just started finding family after family, and before you knew it we had this beautiful little community of families who were all battling the same thing. And they were asking questions of each other, and answering and giving support and sharing the most amazing stories of their children.

And I think Dee and I thought, "Wow, isn't this incredible?" But the fire was really set in our bellies I think, and we still thought that whilst this community is fantastic and it provides an emotional support, there has to be something more, we as a country can do better. And we decided to front up in Melbourne and go and visit the guys at the Stroke Foundation and tell our story, and half-expecting for them to say, "Ladies, that's lovely, off you go.”

And before we knew it, we were having some really serious meaningful conversations about what this journey meant for us, but also what it meant for the community and what was missing in our children's treatment and follow-up care. From that, I think we've had so many incredible experiences but they really are about to culminate in the release of the Our Family's Stroke Journey resource. And that has just been an incredible coup I guess for our families but more so for the families to come, I think.

Chris: [26:21] Now, you developed this resource along with Katherine David, or KD as she's known at the Stroke Foundation. And this is part of a childhood stroke project, I believe. Now KD, could you tell us a bit about... from your perspective, how this childhood stroke project came about?

KD: [26:38] Thanks Chris. We had a great booklet about stroke in adults, but we knew we needed to do more in terms of information about stroke in kids. As Dee and Kylie were saying earlier, it was around this time that they came knocking on our door. They came to see us and they're obviously wonderful and passionate advocates in the space. They were able to connect us with Little Stroke Warriors ,and we went on the path together of developing Our Family's Stroke Journey.

Chris: [27:12] Okay. What's in Our Family's Stroke Journey?

KD: [27:12] Our Family's Stroke Journey is a complete guide for parents after a child's stroke. It answers those questions in the early days that parents have about stroke in kids, and how stroke can affect their child, as well as treatment and care their child will receive. It also, really importantly, provides a roadmap for recovery by giving parents the information they need about life after their child's stroke, and connects parents and families with the right supports and services.

Chris: [27:43] Okay. And in the resource it also has a lot of, I suppose, little personal stories from many parents of kids with stroke, obviously Dee and Kylie but other members of Little Stroke Warriors. What's it been like hearing those stories and meeting those people and getting them together?

KD: [28:04] It has been incredibly inspiring for us at the Stroke Foundation to work with Little Stroke Warriors and lots of other families that have been affected by stroke in kids. There are some really amazing families out there who were clearly very, very passionate about supporting other families. And from the Stroke Foundation's perspective we are very grateful for the opportunity to learn from these families and hear their stories. We found the willingness of families to share their lived experience to help other families has been paramount in this project. We've also had lots of health professionals right across Australia who have very generously given their time and wisdom and have supported this project, so we want to thank everyone involved.

Chris: [28:58] And Kylie, what do you hope that people get out of this Our Family's Stroke Journey resource?

Kylie: [29:10] I hope they get a sense of hope. I hope they get a bit of clarity around the terminology that will be thrown at them in the early days, it's one of the things that was the hardest to deal with was having zero comprehension of what some of these doctors were talking at me about. I think that having parents be a little bit educated about the situation prior to going to some of their big meetings will be really important for them. And I think it's just being able to provide a sense of, again, a sense of community and a sense of you're not on your own. We all know that every stroke is different and every child will be different, but hopefully through this resource parents will have a little bit of a guide and a "what next" for their child. Yeah, I guess that's it for me, it's really just that feeling of hope and of not being in the dark.

Chris: [30:07] Yeah. And Dee, do you think there is, I guess, other information there for the parents but also for other people who may be involved with childhood stroke as well, even some of the health professionals you've encountered who may not have much knowledge about it?

Dee: [30:21] Yeah, absolutely. I think the resource... Katherine has led this and she has been incredible to work with. And I don't think she's missed a beat really as far as being able to inform. And I believe that definitely allied health professionals, maybe even teachers, people can get a sense of what the journey's like and what the family's going through. And stroke is a unique diagnosis and I think it's important to realise that childhood stroke is within its own medical condition. And I think a lot of the time kids can get put in a box, so to speak. And I think if you have a document that explains what's going on it might give people a bit more empathy and compassion and I guess a better understanding of the child as well, and what the parents might be going through.

Because as a parent it is a journey of grief and loss as well, and it's very hard to admit that sometimes because you're so grateful that your child survived and that they're here and they amaze you every single day. But at the same time there's a lot of blame on yourself as a parent. Yeah, I think it alleviates a lot of those emotions and it pulls down those barriers as well so I'm very, very grateful for the resource. And I just wanted to say thank you to Katherine, the Stroke Foundation, and Dr Mark Mackay as well for his contribution and expertise in developing the resource. It's brilliant.

Chris: [32:11] Mark, what are you hoping that people get out of the Our Family's Stroke Journey resource?

Mark: [32:16] I think that for me the key message is that knowledge is power, and that this is a really comprehensive document that provides information for families about the causes and consequences of stroke and the risk for recurrent events. Which I think is very important because the difficulty is that there's very little appropriate information that parents can access on the internet, so this really has all that information packed in. The second thing that I would echo Kylie's comments that this really gives the families a message that they're not alone. And I think the strengths of the document is that it approaches our families' needs from a national perspective, so the information there about the supports that are available are really provided across every state of the nation and I think that's actually really important. So that where parents can access resources, access help from health professionals, but also information. I think it's just fantastic.

Chris: [33:26] Great. Okay, KD, can you tell us how can people get a copy of Our Family's Stroke Journey?

KD: [33:29] People can find Our Family's Stroke Journey on our website, the Stroke Foundation website, or they can give us a call on StrokeLine and we'll send them a printed copy. We're also working closely with children's hospitals right across Australia to make sure parents receive a copy of Our Family's Stroke Journey early after their child's diagnosis.

Chris: [33:50] Right. You mentioned StrokeLine there, what other help is available through StrokeLine?

KD: [33:55] Our health professionals on StrokeLine are available to provide information, to provide advice and also support. People can get in touch with us at any stage. This might be quite early on after their child's stroke or it could be later down the track. Parents ask us lots of different questions on StrokeLine, but more commonly parents want to know about how to navigate the hospital system, and also accessing early intervention and rehab, the different types of therapies that are available for kids, tips on getting back to school and also how to connect with other parents and families through groups like Little Stroke Warriors. So we'd certainly love to hear from anyone who has a question or needs support, please do get in touch with us.

Chris: [34:46] Fantastic. And Kylie, I imagine you'd like parents to get in touch with Little Stroke Warriors if they're in a similar situation. How can people contact you?

Kylie: [34:56] Absolutely. So we have a Facebook page, we actually have two. We have Little Stroke Warriors Australia, which is more of a public page where we can share information and resources, but then we have a Little Stroke Warriors Australia Support Group, and that's a pretty heavily guarded little group. We make sure that we're only allowing parents and carers into that site. There are a couple of questions to be answered but you can most certainly find us on Facebook. And either Dee or I are usually there to answer a question if there's one come through. Yeah, reach out we're more than happy to have a chat.

Chris: [35:37] Fantastic and Dee, you'll make them welcome and give them the help they need?

Dee: [35:41] Yeah, absolutely. The group is very supportive of one another. Usually now Kylie and I don't even have the chance to respond because so many people jump on and they respond to people straight away. The community is safe and it's respectful and it's really pivotal to a parent's journey, or carer. We also welcome family members as well, and immediate family members, so we find that helpful. Grandparents join the group generally. We know stroke affects the whole family, not just the parents. So it offers them some understanding of what parents are going through and also gives them a chance to see these amazing children thrive, so again, it provides a lot of hope.

Chris: [36:34] Well, thank you very much. Now, remember too that StrokeLine if you need to contact that you can reach them on 1800 787 653, that's 1800 S-T-R-O-K-E, or you can ask a question through EnableMe and get a response from health professionals and other stroke survivors. Also a reminder that Our Family's Stroke Journey will also be available through the Stroke Foundation website, which is strokefoundation.org.au.

Well, that is all we have time for today. If you like what you've heard, please take the time to give us a good rating and review on your podcast app, as that helps lift us up in the search rankings so that other people can find our podcast. And I want to thank again our guests, Kylie Facer and Dee Honeychurch from Little Stroke Warriors Australia, Associate Professor Mark Mackay from the Royal Children's Hospital, Melbourne, and Katherine David from the Stroke Foundation.

Kylie: Thank you.

Dee: Thank you.

Mark: Thank you.

KD: Thanks, Chris.

Announcer: [37:25] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.

EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.

The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.