Intro to Sarah, What does a Neonatal SALT do?

Andrea 0:06

Hi everyone and welcome back to Peeps in a Podcast. It's Andrea here again and I'm very pleased today to be joined by Sarah Edney, who is a neonatal speech and language therapist. Hi Sarah, thanks so much for joining us.

Sarah Edney 0:22

Hello, thanks for having me.

Andrea 0:24

It's great to have you here. We've, sent out the message about this podcast on the Peeps Facebook group and other social media and got a number of questions in for you. And, you know, I know in my experience with my son, even though it was 11 years ago feeding and, managing his feeding was probably one of the most emotional things that I was dealing with So I know that this is going to be so useful to so many families out there. And we're really pleased to have you here to answer some of those questions. But before we start, what would be great is just to hear a bit more about you. Tell us, what does it mean to be a neonatal speech and language therapist?

Sarah Edney 1:01

So I work at the Royal Preston Hospital normally in my day job, and I work on the neonatal unit, they're helping any of our babies that having any feeding and swallowing problems. And I also have a follow up clinic. So I see babies up until they're two, I recently extended that to five, thanks to commissioners. So that's nice. But essentially I'm there to, assess feeding and swallowing, see if there's anything we can do to improve feeding and swallowing, but also to prevent and minimize the likelihood of feeding and swallowing problems developing in the future. At the moment, I'm not doing much by way of clinical because I'm doing a full time PhD at the at Newcastle University, and that's been funded through a Welcome Trust Fellowship that is about feeding outcomes in HIE.

Andrea 1:50

Oh, that's so interesting and amazing that you're doing that work because I know the research that's going into how to help our HIE children is really, really important. what's the reason behind you being interested in HIE and those feeding outcomes?

Sarah Edney 2:07

So about 10 years ago, I used to work as an adult speech and language therapist and I, I, my first master's degree I did was in stroke management and I worked on the, for a little while on the regional spinal injuries unit and on stroke units and neuro rehab units. So the, the neuro side has always been really, really interesting and important to me. So 10 years ago, I started working on a neonatal unit. And it was a massive learning curve. So I was the first speech language therapist that they'd had. I I was learning as I was going, I was trying to read up everything I possibly could and ask everybody all these questions. And the first baby I came up against with HIE was quite a severe HIE. And. I didn't feel like I knew what I needed to do. So of course, first thing, okay, let's, let's have a look at the literature. Let's see what it's going to tell me. Let's ask people. What do we know? And the answers were, Well, basically we don't know, we don't have the research around this area to be able to give parents proper answers as to what the future might hold for their babies feeding. We don't have, we still don't have. Any evidence based feeding interventions that are for HIE. I found that most of the neonatal feeding literature has been focused on preterm infants, particularly healthy preterm infants. And it's certainly very important that we understand how prematurity affects feeding, but actually this, this, this baby that I had in my hands, really, really, really needed some, some feeding and swallowing interventions. And it felt like he'd been completely bypassed by the research. So I decided pretty much then and there that I was going to, to fix this. And that's what I've been doing over the past about eight years, been building up to the PhD that I'm doing now. So I still find it's an area that people don't understand very well. I find that in general, neonatal staff have, have a reasonable idea of how to help a preterm baby develop their feeding skills, but when they've got a term baby, for example, with a significant neurological impairment. People do not feel confident to help that baby's feeding and swallowing improve.

Andrea 4:32

I can just hear all the families listening to this podcast cheering you on because they feel like that. So it's so across the board that we suffer, from there being a lack of knowledge and information to help us with HIE. It's kind of baffling really why that's the case, but thank you so much for what you're doing. I'm really excited to be able to share at least some of those amazing pieces of knowledge that you've got. So let's get stuck in. One of the first questions that came in from

How common is reflux in HIE babies?

Andrea 5:03

one parent was talking about reflux. How common is that in HIE babies and what, I'm sure there's many, many people listening thinking, what can we do to help with reflux?

Sarah Edney 5:14

Yeah, I bet you're right. So reflux and H. I. E. it's, it's incredibly common. I've was reading recently something like 70% of our littlies who've had an H. I. E. event will be having trouble with reflux. So for those who've been lucky enough to not know this already and not have encountered it, reflux is basically where you've got, you know, you take in food and drink through the mouth goes down through the pharynx, which is where it goes into the mouth. avoid your airway, ideally goes down into the esophagus, which is the tube down to the stomach and into the stomach. Reflux is where it keeps bobbing up out of the stomach and comes back up into that esophagus, up into that tube, or it can come up into the airway. So it's certainly a big problem. And 70% is, is pretty huge. So. What what the problem for little inns with HIE is that all of those processes, all of that process of getting food into the mouth and getting it through the pharynx and down the esophagus and into the stomach and staying in the, into the stomach. All of that is so many muscles and so many reflexes and it's a whole sequence of events. And it's very, very easy for those events to get out of sync and all of those events are controlled by the brain. So whenever there is any kind of dysfunction with the brain, then any or all of those processes can be, can be weak, can be too strong, can be out of sync. And this is why children with neurological injuries and neuro disability often do experience reflux. I mean, it's, it's. as I say, incredibly common. It's also exacerbated. So it's more than just what's happened in the brain. It's, it's exacerbated by so many other things that also come with HIE. So things like constipation can put that extra pressure onto the stomach from below things like positioning. So a child who. is up and walking around is going to get more benefit from gravity than a child who isn't able to be up and walking around. Children who have seizures, that's something else affecting their brain. And that means that the, the messages going to all those parts of the body will be affected by seizures as well. So. All of these things come together and many others. So these, these poor little ones with HIE, they really do cop it from multiple angles where, where reflux is concerned and as you've alluded to the consequences can be pretty miserable. So they can range from some really like non specific symptoms or like some discomfort and it's really, can be hard to differentiate what is going on with the reflux. But. It can also have some really, really serious consequences where you've got, you know, food and drink and acid from the stomach coming right up into the airway and going down into the lungs and causing respiratory problems. So, yeah, we've got a huge, huge range of, some children will have a bit of reflux and be a bit uncomfortable, but kind of be okay and, and might grow out a bit. Others, it's, it can be a really life threatening thing. And for many it's somewhere in the middle and that's where it's affecting desire to eat and drink. And that can be through loss of appetite that can be through the you know, negative feedback from having acid hurting, hurting your feeding tubes all the time can just make you start to associate food and drink with.

What can you do to help with reflux?

Sarah Edney 8:47

pain. So yeah, the consequences of reflux are huge and the number of children with HIE and reflux is also huge. So surely we've got a brilliant answer to what to do about it. I'm guessing actually a lot of your listeners will know. that it's actually really hard to manage as well. So I think the most important thing is to have a whole team approach. So there will be different members of the team that will have different areas of expertise, but ideally they will all be able to work together to share what they can to, to help manage the reflux as best possible. So often that includes a combination of multiple things that might be medications. It might be positioning. It can be thickeners like carabel or, or thick and easy that kind of weigh down the feed and, and help hold it into the stomach. Dieticians are very good at being able to kind of work out a feeding regime with the timing and the amount of feeds to reduce the amount of pressure that builds up in the stomach. And then sometimes these children will need surgery and that's often something like a fundoplication where the tummy gets a little twist to, to make that valve that holds things in the tummy that gets a little bit tighter. And the other reason that you want a full team involved is because you want to make sure that if you've got some nonspecific discomfort, nonspecific reduced appetite, reluctance to eat, is that actually reflux? You want, you want some diagnostics done ideally.

How can you get a whole team approach from professionals to help?

Sarah Edney 10:17

And I say all of that, knowing full well that getting that whole team approach can be really, really hard. So, yeah, I feel for you so much.

Andrea 10:28

Who's on that team? Who should be on that team when you think about a whole team approach?

Sarah Edney 10:33

Yeah so we would want we'd want our doctors involved because we do need we do need the medical side and the prescribing. Having speech and language therapists involved can be very helpful because we can not only provide Some general advice around reflux, but we can also do a lot with the differential diagnosis. Is this child reluctant to eat and uncomfortable because food and drinks coming back up from the tummy, or is it actually not going through the pharynx very well in the first place? So, so that might be an investigation we might do such as a video foroscopy, just to get a sense of what's actually going on. Dietitians, as I say, incredibly helpful for. What and how the feed goes in physiotherapists and occupational therapists can be incredibly helpful for, for positioning and seating, for example, during feeds. So, yeah, there's, there's a good few, there's a good few and getting everybody in the room together is virtually impossible, but worth, worth it, worth pushing for if you can get it.

Andrea 11:37

Yeah, absolutely. And where would you start with that? Can you give any advice in terms of trying to get to the right people?

Sarah Edney 11:44

Thank you. So usually the first thing you need is to be under a paediatrician. So a lot of little'uns who leave the neonatal unit after an HIE event, they will be under a paediatrician for a while, but not all. And this very much depends on where you are. So particularly the ones with mild HIE. will often be to be discharged back to universal services. If they leave the neonatal unit feeding and there's no immediate concerns they can often slip through the net there. So getting a referral to a pediatrician is your first thing. And from there, once you are. into a pediatrician then asking all the questions. What else can we do? What might this particular professional have to offer? Can I get a referral here? Can I get a referral there? And when you've got your team, then it can be, right, which of my team is the most helpful? And so let's just say you've got a brilliant speech and language therapist. You're like, right, everybody is, is really lovely, but I need you all together. Who's going to be the person who's most likely to advocate for me? And it may be that you're a speech and language therapist. Please, Sarah, please, will you please email everybody and get everybody in for a conversation because I've got this from you and I've got this from our lovely dietician and I've got this from physio and I've got this from the doctor but... Something's not lining up, could you please arrange a meeting a 15 minute team's something just so that we can discuss together what, what best management might be, if you are finding that you are struggling to get referred to a pediatrician, or if your pediatrician is saying, yeah, we don't actually have speech language therapists commissioned for feeding in this area, or we don't, you know, our dietician waiting list is two years time. I mean. There is likely to be many of you who've already tried all of this and, and haven't managed to, to get a whole team. So then it's about being as educated as you can be to ask the right questions to ask about, okay, what might you say? You know, you're a speech therapist, but what, what, what could we do about positioning? What do you know about, who could you ask? About timing of feeds and if you're really, really, really struggling to get anything and it's like nothing is commissioned, that's when you can speak to your paediatrician about getting things spot commissioned. Can we, is there anybody out there who can do this in the private sector? Can we get, can we get the commissioners to? To spot commission this, and that means basically pay the service to see us as one off, and that can be really helpful because when a, when a few families have gone down that route, then it starts to become a visible problem. All I'd say is just keep talking to people, keep asking, keep, keep, keep the people you've got and see. See how how helpful they can be don't, don't, don't be shy about saying, you know, you're, you're lovely and helpful, but it's not enough because we know we generally know when we're not enough. It's okay to say that

Andrea 14:58

I think that's great advice. I'd never heard of the term of spot commissioning, even just knowing that term and being able to use that term as a possibility is something I think will be really, really helpful to people fighting for. What their children need. So thank you very much. That was brilliant.

Encouraging finger food and revisiting skills with children who are predominantly tube fed

Andrea 15:16

Okay, well, let's move on to a slightly more in-depth story that one mum has sent in, which relates a little bit to this as well. She says, my question is to do with tips for encouraging finger foods and whether it's worth revisiting skills, like sucking from a teat. As a two nearly three-year-old.

15:36

So she says that her little, one never breastfed or successfully fed from a bottle. He never latched on. So she had decided it was best to focus on bottle-feeding, but although he was able to suck and swallow safely, he seemed quickly overwhelmed by the experience. And with reflux, rearing its ugly head. And I'm trying to build up the volumes and preventing him from being sick became the priority. So he had an NG tube until the month where he turned one. And then he had a gastrostomy. And he's turning three, this September. They continue to offer him tasters orally, but he rarely entertains anything except for grated cheese or candy floss. He does not intentionally bring his hands up to his mouth yet, but he's continuing to develop the use of his fingers and hands to explore different textures to hold objects and press buttons and switches. So going back to that original question. Should she be encouraging finger foods? Is it worth revisiting skills like sucking from a teat with a two nearly three-year-old.

Sarah Edney 16:39

So I'm guessing there'll be quite a few families out there who will relate to this situation and the, what do you do? What do you do? So I know that all these children will be a bit different to each other and I'm not going to be able to say what this particular family should do because I'd be wanting to do a full assessment and find out all the issues and that would certainly determine what my course of action would be, but I'd say in this situation the key information that I'd be picking up on from here is that we've got a three year old that has Always been tube fed. That we've got parents who've noticed that although they've been told or, or they feel that the, the swallow itself is safe, that we've got a child who's, who they've noticed as is overwhelmed while trying to drink through a bottle. And reflux has obviously been a big issue there. Isn't keen on the tasters for the most part, but I think a really positive thing there is that. We have an in, we have some things that this child likes. So that's awesome. And I'm also noticing that this is a child who's starting to develop some autonomy with his hands and what he's able to put in his hands and what he's able to do with that. So those, those are the really important kind of key things I'm picking up here. And there. First thing I would be wanting to know from this is what is causing that overwhelm. What is the situation for this child when they're being offered a bottle that, that is... Presenting as being overwhelmed. So it could be that yes, the swallow works, but that there's a fatigue effect going on. And it may be that those swallow muscles and those reflexes that keep everything going down the right way and keep everything kind of comfortably feeling safe, that if they get tired very easily, then suddenly little bits of. of milk trying to go down the wrong way all the time, in which case that child isn't going to be that keen to, to drink. And actually, the swallow that appears on the first little bit to be safe actually isn't that safe. So I'd be wanting to investigate that and that might include. Something like a swallowing x ray Videofluoroscopy or some services offer something called fiber optic endoscopic, evaluation of swallowing. And that's doesn't use x ray. That's where you've got a little camera that goes up the nose and you can see what's going on in the airway. I don't have access to that yet, but maybe one day. So, so that's, that's really a, an important question for this child is how safe is that swallow? How comfortable is this? And I'm also, as I say, really noticing that reflux history coming through. So this child has obviously got some big problems with reflux. That will almost certainly mean discomfort. And it will also mean associations between. eating and drinking and being uncomfortable. So if we've got milk is uncomfortable and I'm having it from a bottle, feeds are uncomfortable, generally having a full tummy is uncomfortable. What's the motivation to eat and drink here, you know? So I would be guessing that this child. Has had some negative sensory experiences on a fairly regular basis through the whole nearly three years because all of this time he hasn't had any particular time of enjoying feeding because he hasn't had the ability to so when you've got a child who's had three years of of not being able to kind of control. How and when they eat, and also that when they eat and drink, it's been uncomfortable. Then yeah, you are going to get a child that, that isn't that keen. And I think the things that this parent is saying that they're doing is going right. You like grated cheese. You like candy floss. Brilliant. Great. Offer them. Wonderful. I think that's, that's, I mean, I'm going to, I'm going to say kind of what sounds quite blunt, but I think that is all you can do is provide the opportunities. and provide the positive opportunities. So I am, I haven't mentioned, but I have a son with autism and I remember the stress of trying to feed this kid and he's older now. So I, I wasn't working in pediatric feeding then, but I remember every time it was meal time, I could feel my little forehead furrow and I, I'm, I'm look back. I just must have looked so intense all the time, every time it was time to eat because it was so stressful for me. So that's a thing for, for both sides of what we call a feeding dyad. The feeder and the feedy is to like, let's try and take the stress out. And fake it till you make it parents, because you won't not feel the stress, but you've just got to go, right. What does my face look stressed? Let's see if I can smooth out those furrowed brows and have some fun. Now, this is a child who's learning to, to use their hands and actually the picking food up and putting it in your mouth and swallowing it is, is, is late stage stuff. So. Actually, there's all of those sensory experiences of learning what food feels like on your hands is really important for feeling safe in your mouth because our mouths are all the more important, all the more sensitive. Compared to the rest of our bodies. So a child who isn't used to or comfortable with what this feels like in their hands is really not going to be comfortable with what it feels like in their, in their mouth. So learning about all of those textures and, and temperatures and things like that, having a play with that in their hands is a really, really important first step, and also, I would say this for literally any child, having some. Autonomy as to like that, that feeling of I can control this. If I'm not enjoying it, I can make it stop is really important. So this child's only just learning to use their hands and to be able to control what's in their hands. And isn't yet at a stage of being able to kind of lift things themselves to their mouth. So. This child needs the space, I think to feel safe, to feel like, okay, this is all in my control. If I'm not enjoying this, I can make it stop. Because if you feel like you haven't got the option to make it stop, you're gonna be less adventurous. Does that make sense?

Andrea 23:11

Absolutely. I can

Sarah Edney 23:12

well imagine and

Andrea 23:14

Remember really well how much... stress there is and so finding a way to stay calm when it's so difficult is, is just the most incredible battle. I'm just feeling so guilty that I couldn't get it to work. And, and so then you try even harder and try even harder. And actually to have a professional say to you, like you've just said, actually, sometimes you just need to let it go and you don't need. to be pushing this it's okay to take the time. Hopefully is, is a really good message to hear.

Sarah Edney 23:46

I'd also say this, this, this family's, I, this is the kind of my point is that they are doing everything that they're doing it right. It's okay. The, the, the circumstances that have led to this child not being that keen to eat, absolutely. It's not their fault and it's not something that they can easily rectify. So I think that just like, let's play like, okay, we're all we're all sitting around having a good time at a picnic or something here. Do you want to, do you want to join in? Do you want to, do you want to have a play with this food? Do you want to sniff this? So. It doesn't always have to be about taste either. That, that, that smelling's an important thing. Also though, this parent asked about, do we go back a step in terms of the, the skills? So what I'd say regarding that question about whether to go back to trying on a bottle teat I don't know this child. So again, just, just to emphasize, I, I don't even know. I couldn't even say whether the, the swallow is, is safe or whether the motor skills for chewing are there. I don't know any of this, but what I would say is that in general, I'd be working on the skills that I wanted to see. So for a three year old, I wouldn't be worried about whether they can feed from a bottle or not. If I were wanting them to be able to take some drink without from, not from having a feeding tube and that that child seemed keen on that idea, I'd be working on cup drinking rather than rather than going back to a teat. So just focusing on the motor skills that you actually want to develop. But I would also say, before doing that, let's find out why this child is getting overwhelmed with liquid. Again, it's just so important to be able to have access to the people who can, can see it with the expert eye.

Andrea 25:36

Yeah, absolutely. Well, thank you very much for those answers, and I really hope for the the parents who sent that in, that's helpful, oh,

Sarah Edney 25:44

can I also say, because I know the parents, the parents, the parents will be, you know, listening, and maybe they'll go, no, you've completely misunderstood, or yeah, but feel free to send a follow up email. I'm quite happy to answer follow up questions for these individuals that have sent in questions, because, yeah.

Andrea 26:02

That's amazing. You're wonderful.

Encouraging solid food with children who can manage milk feeds

Andrea 26:04

Let, let's move on then. We, we had another question in about what advice you've got for babies who are managing milk feeds, but are then struggling with solid foods. Yeah, tell us what you think about that.

Sarah Edney 26:17

So, so I think the questions that have come in have been really nice balance across, across the situations that I would commonly see. So, This is a different situation where this child from, from what I gather is managing the milk feeds absolutely fine. So we can assume that though the pharyngeal reflex, the, the airway issues, the kind of the swallow safety, that's, that's all fine. And this could, so this is going to be one of two things. And that is, it's going to be a difficulty with the motor skills, the actual like physical skills of the biting and the chewing, or it's going to be to do with the sensory side of things or, or a combination of both, which is quite common as well. So. And this child is absolutely loving the idea of eating and drinking and is struggling with the motor skills. So one, get an assessment from a professional before doing anything, obviously. But a child in my clinic who I thought, right, we need to work on those motor skills. And from a sensory point of view, they're doing great. I would be for example using what's the word like dissolvable crisps. Those things that kind of break down really easily in the mouth that aren't particular choking risks. But you get to practice the biting and the chewing, or there's chewy tubes that you can put purees and things on. So you can put kind of the chewy tube with the puree to the side of the mouth where you might do that kind of side chewing normally and practice it that way with, with something that doesn't actually need to be broken down. So there, there are a few options for that I might use for a child who I was. Teaching them to, to bite and chew. But the other side is the, the sensory side. Now, this is one question I really, really want to ask here is. Where what the solids that this child's struggling with, because I see a lot of kids who they manage milk, they manage smooth purees. And then the next step, according to the supermarkets is lumpy purees. So many kids hate lumpy purees and they can't cope with them because they're not one thing or the other. It's like, what am I meant to do with this? Some kids just find it downright unpleasant. Many just find it confusing. Yeah. Yeah. Yeah. Yeah. And, and actually it's completely fine developmentally to skip those and move on to actual finger foods. So from a sensory point of view, it might be that this child just needs. You know, and this family just needs permission to skip what the supermarket says is the next step and just move on to, to the finger foods, to bits of toast and things like that. Or it might be similarly to the first situation that we were talking about where the, the sensory side is to do with the particular taste. It's gotten used to the feel and the, the taste of milk and all these other things are quite overwhelming. In which case it's going to be little experiences. It's going to be for a child who has got some ability to control what goes in their mouth, kind of just pop something on their finger and encourage them to be able to bring it to, to the mouth themselves just for a taste. Messy food plays always good. Yeah, those, those fun activities that create the opportunity to explore the food in a completely non threatening way is the way forward there.

Andrea 29:48

That's great. Thank

Can tube fed children taste or sense flavour at all?

Andrea 29:49

you. The final question that we had come in was around tube fed children and asking whether or not they can taste or sense flavor at all. Can you tell us about that?

Sarah Edney 30:02

So yes, yes, they absolutely can. Yes, absolutely. And I think one of the things is that, to note, is that they are experiencing taste and flavor. And a child who is entirely tube fed will almost certainly be getting the taste of usually a little bit of reflux, a little bit of acid in their mouth kind of the taste of, of just kind of the gunk that builds up, et cetera. So, The children who are entirely tube fed really need the opportunity to have some positive tastes and things as well. And that can be very tricky. One, because a child who isn't used to having these tastes, actually their sense of taste is probably heightened. These other flavors are going to be like, Whoa. So it's not a case of, Oh, I can't taste it. It's more like, Whoa, that's. That's huge. I'm, I'm not used to that. In which case it is going to be, let's get used to things gradually and in an end and in a non threatening kind of way, but then the other side of that is, well, how, you know, I've got a child who I've been told cannot eat and drink at all. It's not safe. How do I give my child these, these taste experiences? So there are ways again, ideally, if you can get an actual assessment to say, okay, can they manage anything? Can they have a little swipe? of puree on their lip. Can they manage that? And if not, what about some flavored lip balms? There's another product that's a colleague of mine's just exploring at the moment called BioZoon and it's basically flavored air. And it comes in a whole bunch of flavors. So safe from the, from the point of view of, of swallow function. And she's found some of the kids she's tried it with have really, really enjoyed it. Others, it's just not, not done anything for them. And then she's also questioning whether an expensive fancy flavored air product is any better than the kind of smell of food or the, the tastes from, from bits of bits of puree. So there's, there's certainly ways and means of getting some of these flavor sensory experiences and it really fits in well with that whole thing that we're talking about of the, the importance of having some positive sensory experiences. So this isn't just because we don't want to be constantly pairing negative experiences with eating and drinking, but also what we know about how the brain repairs itself and how the brain learns is that motivation is a really, really important factor. So a child who is keen to make something work is, their brain is to line up the skills better. To make that happen. So yeah, if, if they're having a great time having some taste of ice cream and that's what they are managing, great. Go with it. Go with it. And usually in these cases, the child has their feeding tube for the nutrition side of it. So this is just all about fun and experience and participating.

Andrea 33:06

Yeah, fantastic. I remember well, ice cream was, was one of the biggest early hits for, for my son as well. So that's, that's great. I, I wonder as we're coming to a, coming to a close here, are there any particular things that you have got out of your research so far that you're doing or, or anything that's come to mind through today's conversation that you might want to end with in terms of, Thank Last piece of advice for those people who are listening.

Sarah Edney 33:35

Yeah, I think the thing that whenever I'm talking to parents about things that they can do, the thing that I'm really aware of is that I'm telling you what I think. I'm not telling you what I know. So my research is about what are the things that make a positive difference. and a negative difference to feeding outcomes in little ones who've had an HIE event. And the reason that that's important is because right now, and I've just done a systematic review proving this, we do not have any feeding interventions for HIE. So one of our most vulnerable groups, we don't have the feeding therapies for. So when I'm saying I think this will help. I'm saying that because that's my observations. That's kind of me using the theoretical knowledge I have of what should help. I can't tell you what will work. So anybody who tells you they know what will work. They don't know that they don't actually know that. So we, we are working on that. And one of the things that's going to come out of my PhD is knowing what makes a positive difference and knowing what makes a negative difference will help us to design the interventions, to develop the interventions, to be able to tell parents, you know, get your health professionals to support you, to do more of this, we need to try and minimize this and hopefully. In the next five to 10 years, I'll actually have some proper answers for you to tell you what will make things better.

Andrea 35:08

Well, that's great. Well, we look forward to staying in touch with you and hearing about that as it develops. And, you know, certainly from my experience as a mum, I remember in the early days where I struggled so much to know what to do almost at every turn and I'm sure that there's going to be many, many parents listening to this now feeling the same way. I also remember when I used to get advice from people and. In those early days, I would often hear that advice and think, why didn't I do that? That sounds obvious. I should have done it and, and feel very you know, allow myself to feel very upset. And I think from what you've just said, the thing I take away from it, and with the kind of 10 years experience I now have, the thing I take away from it is that those of us who are parents, who've got a child who had HIE, we are. Constantly trying to make decisions totally in the dark with very little support. And frankly, everybody is awesome and doing the best job that they can. And I think what you've shared today is going to make a massive difference to a lot of people, I'm sure. And the work that you're doing with this PhD and trying to come up with these interventions is just phenomenal. So thank you again for that work. I'm really You know, that's just me thanking you, but I'm sure that other people listening, feeling the same way.

Sarah Edney 36:18

Right back at you. Thanks so much peeps HIE. You're just all so wonderful. And I can't tell you how nice it is to know as a health professional that I've got people and. Sources of, of, of advice and support that I can direct families to that I can trust. It's just wonderful. So thank you.

Andrea 36:36

And, and that's, I guess the last thing that I wanted to say for anyone who's listening if something in today's discussion has made you think, you know what we. struggle with that, and this worked for us.

Sarah Edney 36:48

Um,

Andrea 36:49

Write down a comment on one of the one of the Facebook groups. We'll, we'll keep a good lookout for that and, and hopefully, maybe even be able to feedback some interesting stuff to you, Sarah, as well.

Sarah Edney 36:58

That would be great. I'd love that.

Andrea 37:01

Fantastic. Well, thank you for listening. If you've stayed with us this long, and thank you again, Sarah, so much for coming, and we look forward to speaking to you all next time. Thanks everyone. Bye. Bye.

Sarah Edney 37:11

Thanks. Bye