Episode 5: Peeps in a Podcast - The Betweeners

Sarah: 0:07

Hello, welcome to our next edition of our Peeps in a Podcast. I'm Sarah, the co founder of Peeps Charity, and I have with me this morning Andrea and Lydia, who are two HIE mums, who are going to share a little bit about their journeys. So, Andrea. Over to you

Andrea: 0:26

first. Thanks, Sarah. So yeah, I've got Noah and he's 11 now, so he was born in 2012. I went to the hospital because I was worried about the reduced movements and I was there for a whole day before eventually his heartbeat suddenly stopped when I was on the monitor and they had to rush me in for an emergency c section under general anaesthetic. He was born and he didn't breathe for 24 minutes. He got given a diagnosis of grade three HIE. He went immediately to NICU And certainly for the first kind of week of his life, we weren't really sure if he would pull through or not pull through. When he was nine days old, they told us that he didn't have a gag and suck reflex, which was a bad sign in terms of the, you know, his recovery. And so at that stage, they told us that they felt it was inevitable that he would have a very severe disability. There were, that was, you know, very. shocking at the time. It's not what you're expecting. It was pretty, pretty awful. However, I always remember being quite relieved because in that meeting I said, but so you think he's going to live now? Cause they'd let me go a whole week, basically feeling like he was about to die at any second. So and they were like, Oh yes, yes. I was like, Oh, it might've been nice for you to tell me at some point that that was the case. So, he was in NICU for five weeks, but when he was around about, I guess, 15, 16 days old he. Fairly suddenly, I developed his gag reflex which was the start and he started to be able to suck very gently. So he came home amazingly at five weeks old without needing any equipment really. So he was no longer tube fed which may have been a mistake actually, but he was no longer tube fed. He's just started really to, having gone from this initial prognosis, he just started to get better and better. We had a tough first three to six months because his feeding, he really struggled with feeding and he went from being a 98 centile baby, the giant of the NICU, into down to being a, you know, ninth centile baby because he was really struggling with oral feeding. But at around about four months, they suggested that we switch to solids. And from that moment on, he, he just, he started to get better and better, which was, which was amazing and, and amazingly based on everything we'd been told, he then went on to meet most of his milestones within sort of two or three months of the normal range, which was incredible. And felt like a complete miracle. And we, obviously we were over the moon and couldn't believe how lucky we'd been. Um, Hmm. So at two years old, we had the Bailey's test, and he was Mostly discharged from everything apart from hearing and by the time he went to school at four years old, the only diagnosis he had was some high frequency permanent hearing loss for which eventually he got a hearing aid. But by the time he was school age I had started to think. Having had kind of two years from age two thinking we'd got away scot free with no, no real issues at all. I started to realize that he seemed a bit different from his peers. And I, and he had also started to develop a tick where he shook his head, which was a little bit unusual as well. And so we were worried that that was seizure related. We've had lots of different interventions that a lot of which we ended up getting privately because we weren't getting the support we needed on the NHS. And through, through all of that, we're now at a place when he's 11 years old where he's got a diagnosis of a very mild atheroid cerebral palsy which essentially. for him means that he gets tired very easily. He struggles with coordination and his muscles are moving almost imperceptibly all of the time between high and low tone. He's also got speech and language issues. He's been diagnosed with autism and ADHD. He has this tick which remains to this day where he has quite big head movements and often needs to gallop around and, and shake, shake his arms and things like that. And his hearing loss and he has a sleep disorder as well. So there's quite a lot going on a lot more than we initially thought. Now he's just gone to secondary school. We've moved him from mainstream to specialist where he's doing much better. He's feeling much more well supported. He's finally enjoying school, which has been the most incredible thing because he's really struggled with school throughout. So yeah, he's, he's amazing and gorgeous and hilarious and we love him completely. But it's been a real rollercoaster of a journey going from having one expectation when he was Before he was born to imagining that we were going to have a perfectly healthy pregnancy through to being told at 10 days that you know, we should expect to have a very severely disabled child through going through him being two years old and having. People say, what did you say was wrong with him? You know, you, you obviously made that up, you know, getting the sense that no one believed us to kind of then learning what we've learned over the course of the last six years and all the fights that that's entailed to get the help that we need to help him be happy and successful and in life. So it's been a long, long old journey, but here we are in a good place, I think.

Sarah: 5:52

And being happy that that is the main thing for so many people, isn't it? But does it feel. Does it feel that it's 11 years since you were having those early and really difficult conversations? Because to be told that at 10 days old when you're in the hospital is to have a look at how you think your future might be. Yeah. It's huge, isn't it?

Andrea: 6:13

It totally. And to be honest, that feels like a complete dream now. You know, it's, it's, it's So many parts of his life now, I think partly because of the trauma that we experienced and the length of the trauma, like, because it's not like one big trauma when this happens, it kind of, it continues on and on and on. And I think. So much of that I don't remember, if I'm honest. I think I've, so much of it I've blocked out, a lot of it I've kind of revisited with a lot of therapy over the years to try and kind of stay sane. But I think, I think the rollercoaster and the not knowing, and also having people not really believe you as you go through about different things that you're experiencing has probably been the hardest part of all of this because You just don't know where you stand. You're like, I feel like that, that kind of, the not really understanding and knowing whether you're making it up in your head or whether you're not doing enough to get them the help that you need has been sort of a constant pressure really.

Sarah: 7:16

Lydia, I can see you nodding along. If, are you able just to, to tell people a little bit about you and, and your journey with HIE?

Lydia: 7:25

Yes, absolutely. There's lots of similarities. Um, Andrea, but there's also a lot of differences as well. So I have Reuben and he was my first child completely normal pregnancy you know, absolutely healthy pregnancy. And I was just over a week late. With him and I went into labor and something I didn't realize at the time was you still had to monitor movement in labor I just thought you went into labor. That was it. Baby was coming and and I didn't realize so we stayed at home and We got to the point where we said let's go to the hospital now and And they asked me, when did you last feel him move? And I said, well, not since last night. So that triggered us to go to the hospital to have his movements monitored. Obviously got there and from that point onward, it moved very quickly because I was obviously put on the machine to monitor his movements and that showed, well, to monitor his heartbeat and I think it was That showed he was in a large amount of distress, which I won't go into too much detail, but then followed a emergency cesarean and he was immediately, well, initially he was resuscitated and things like that but he was then immediately taken to neonatal. And then the condition developed and that's when they diagnosed the HIE grade two. And he was then moved to a different hospital so that he could be in the nicu. Because he had total body cooling he, it was very hard for them to stabilize him when he was initially born and the hours following the transfer, which I don't think is uncommon. But they did they, they said to us it's very unlikely he'll make the journey to the other hospital. And that we was to remain in our hospital because the likelihood he would destabilize and then they would just bring him back to us to pass away. But as long as he could, he could remain stable, they had to take him. So they did. And He begun total body cooling at the other hospital, and over the next week, he just made this miraculous recovery, and no more seizures, and he had a swallow gag reflex, all of that, and yeah, he just, as every day went on, during and after cooling, he just Recovered. I don't know how else to describe it. And I really struggled with that disconnect. This, this picture they had painted for me the day he was born. Where they said, you know, even if he survived, which they really didn't think he would do, to put it nicely, which is not how they did, he wouldn't walk and talk. And so then, in such a short amount of time following that, he just completely changed, he was able to do things that they said he wasn't supposed to, he wasn't going to survive from, etc. And yeah, I, I struggled most with that. With having this picture of. What my baby was supposed to be like or even survive and then recover as much as I'm grateful. I found that the hardest and the most confusing and the most difficult. To move on with he was in the hospital for roughly two weeks in total. So quite a short amount of time, I think, for HIE. He came out of hospital, no services involved, just see you later. He's fine, off you go. And I thought that was it, we were done. And he was an absolutely amazing baby. He cried. All the time which I know now was a sign of other things going on neurologically. But just had the classic, Oh, some babies cry a lot. Some babies are fussy, et cetera, et cetera. And there were small bits all through his first year. But they were not quite right. And me being a first time mum, I didn't have a comparison to know if it was okay or not. Family and friends saying, Oh, my baby did that. My baby did that. It's just this, it's just that. And health professionals not knowing what HIE was, when I would take the baby in, like I'm thinking health visitor doctors, etc. Take the baby in and say, You know, he's crying excessively he's bringing up large amounts of feed, etc. They didn't really connect the two because they didn't really know, you know? So, yeah, that was his first year of life. It was wonderful, amazing, but difficult.

Sarah: 12:32

Sorry, do you mind me just asking? So when you came home from neonatal, were you kind of discharged completely or was there a transition into any community follow up or anything like

Lydia: 12:44

that? He had the hospital paediatrician, who obviously, he was underwent in the neonatal and we went every six months, I think, just for a review, that was it. No other services, so no physio, no speech, language, like in terms of suck swallowing that no OT, nothing, nothing else. And yeah, I, so again, we had the Baileys, I think he had it between 18 months and 2 years. Bailey assessment come back absolutely fine, he was meeting all his milestones. Between 18 months and 2 years. I had high suspicions something wasn't quite right. He wasn't developing neurotypically and But yeah, I just, I thought it was me. I was imagining things because of his birth was like focusing on things too much. This whole wait and see. He went to preschool and nursery and he never, ever settled and there were definitely red flags. Then. They weren't enough of a red flag for other people to kind of say, come on, let's have a think about this now. So he went to school with no diagnosis other than the HIE. And yeah, he begun school and it didn't go well and school mentioned things going on. Again, I raised the whole HIE background and it was kind of like, Oh no, that's not a problem here. And I'm like, Hmm, is it? I think it is because I think that's a pretty red flag, big red flag. With these behaviors that he's displaying. But again, school don't know about it, so I can't blame them either. I thought they were like health professionals where they would tell me what was going on. They would say, Oh, we think your child has ADHD or autism. I thought that's what they did and I didn't realize that they don't. So it got to a point where I then took him to the doctors. And said, something's not right, and I think the fact that he had HIE is a massive red flag. And my GP was fantastic, and he went, Yes mum, you're right, it's a massive red flag, and I'm referring him. And, yeah, so when he was six, he got his ADHD diagnosis, and then we had to wait another two years on the list for the autism. Assessment, which he was then diagnosed autistic. And his current diagnoses are ADH adhd, autism, vocal motor ticks, anxiety. I think that's really due to the fact that. School wasn't great for him. So, you know he's, has very severe sensory processing difficulties as well as things like visual and auditory processing times and that he has a few physical problems, but there at the moment, they're just. Labeling it as the part of the autism, but we shall see what the future holds. I wouldn't be surprised if he adds more to his diagnosis list. But obviously he's still little and we need to be referred to the correct people to maybe take a whole nother look at things.

Andrea: 16:01

How old is Reuben now, Lydia?

Lydia: 16:03

Ten, he's ten. Yeah, he's ten, yeah. Yeah, he's ten, so he'll be eleven early next year.

Sarah: 16:10

The thing that stands out for me with, with both of you talking so openly, and you know, thank you so much for that, is the fact that you both sensed something and you both felt at some point, oh it must be me. Either we, did you think you were over worrying or overthinking or, and I guess for, for anyone who might be listening or know somebody who's at that point feeling I think there might be something, I guess, really, where, where did you find the right support? How did you manage to, to get, I don't like to say a system, but it feels like a system, isn't it? You're discharged. At, at two after a Baileys assessment when you know things are looking a certain way, and then how do you, how do you access that support if you still need it?

Andrea: 17:00

When I look back now I realized that the, the ages between two and four where I wasn't getting him seen by anyone was just such a missed opportunity so I think if your child has had HIE, I think at a minimum, they should be being seen every year by somebody who can be just checking up on them because I, I feel like we, we didn't push for that because I was so desperate to not need it and so desperate to be able to celebrate and say he, you know, everything's fine and we don't need to worry anymore. everybody wants that for you too, and so people are constantly saying it's okay now, you went through a really traumatic thing, you're bound to worry, just chill, you know, basically just chill out because it's over now and, you know, there were definitely times where I felt particularly a couple of colleagues I remember making me feel like you're still making a drama of this and actually it's over love, you know, that sort of feeling, and, and I, you know, I definitely did Allow that to kind of make me feel like I was going a little bit crazy and that I just needed to calm down when actually I think that pushing to make sure that you're getting a regular checkup, I think, at least up until school age and maybe a little bit longer is probably the right thing to do. Well, I know that's not easy, but I think having the courage of your own conviction to say, this really big thing happened to my child and it's entirely appropriate that they are followed up I, I would just really encourage anyone to feel that way. I don't know about you, Lydia. No,

Lydia: 18:31

absolutely, Andrea. Exactly that. And like you say, the whole friends and family trying to mean well. But the whole, you know, you should be over it now. He's fine. He can walk. He can talk. You know what you're talking about. It's not the same baby. And you do let that in, you do let other people's voices in. One thing I would add is, I, for me to get to the point where I could have courage in my convictions. I had to go through therapy first and I had to be able to say to myself, actually, no, it's not me. It isn't me overthinking. It isn't me being neurotic. It isn't me being traumatized. I've done my therapy. Yes, I needed more, you know but actually I've come out of that. State of fight or flight, and I am thinking rationally now, and I'm still not okay, I had to get to that point to then be able to stand up for myself and for him with other people, as well as health professionals and say, actually, no, I think this this and this, and actually the HIE is a big red flag for what we're now seeing. And. Not so much with like the GP and the paediatrician, but with people around me or things like health visitors, you know, I had to educate myself and I did that through. HIE parents and Facebook groups. But I had to say, well, actually no, I know statistically children who have had this brain injury are more likely to have these diagnosis, and we can't deny that. We can't just brush over that. So I had to educate myself. Absolutely. I had to go through therapy to say, no, I believe my voice again. And yeah,

Andrea: 20:30

I absolutely agree with that too. I had a lot of therapy and that really did definitely help me. The other thing that I would advise because we, we resorted to it and I think a lot of parents in our situation do, but getting help from privates health professionals as well. Was really the way the breakthrough really into getting the help that we needed So. I at about school age, a friend of mine had been in a similar situation, recommended getting an OT and private physio reports done an assessment. And at that stage where I really didn't know if I was going crazy or if there was something to be worried about. I just felt that that would help me to know whether or not I, you know, my hope was that they were going to tell me you don't need to worry. Everything's fine. And that was really the reason that I went to do that. What actually happened is that we had a joint. OT and physio assessment. And they were very clear that there were some big issues. They referred us on to somebody else. And and they diagnosed him with cerebral palsy. That then it enabled us to go back to the NHS to push for a pediatrician appointment. And then it gave me the courage in that pediatrician appointment to push when that community pediatrician said no. You know, this doesn't tick my boxes for cerebral palsy. Go away. I was able to say, that's not good enough. I have the courage to do that because I have the support of this. Private report behind me. And I remember the pediatrician got quite cross with me and eventually said, wow, you. If this isn't good enough, I suppose I can refer you to the neurologist. And. Whereas I wouldn't have been brave enough to do it before that stage. I was like, yes, please. Thank you very much. I'd like that referral to the neurologist. And then the. The great thing was that finally, once we were seeing the right person, when we were seeing the neurologist. He was entirely in agreement. Absolutely Noah did have very mild Cerebral Palsy. That these were really real issues and that we did need the help that we needed. And that was kind of central to things changing for us. And us getting the help we needed. From everyone. You know, we finally got in to see the people who understood and could then help us and that was, that was the real turning point for us. So, yeah, it shouldn't be such a fight, and it's one of the reasons that I, first came to you Sarah, I wanted to, try and Work with peeps in the community of other families who are in our situation to try to make some changes in terms of the way that both education and health understand HIE and make some changes to the way that we're understood so that it's not quite such a fight for other parents coming after us.

Sarah: 23:18

And The term, it's a fight, it's a battle. And I guess just,, just following on from that, Lydia, was, was there a, a breakthrough point for you or one particular person or organization that really kind of helped move, move things and get the support in place?

Lydia: 23:35

Yes, absolutely. Very much like Andrea. So I'd, we'd got to a breaking point at school. Reuben was so unhappy. And his mental health is really suffering and I took him to the doctors and I said, I want him referred for this assessment and he said, yes, absolutely. And in the meantime, bring this educational psychology, helpline and that runs in our area. So I rang them and I explained everything. And she went, do this, ask the SENCO for this, do that. But in the meantime, have a look back into a sensory diet. You'll need to contact an OT. I was like, you'll have to go private in our area, there isn't the NHS provision for it. So I was like, right, okay, they're just going to say, I'm imagining it, and if they say that, then I have to, you know, accept that and move on. And we went, and she was fantastic OT, and I think she had worked with some other children with HIE as well. But she'd worked with lots of children with severe physical needs, if you like, so it wasn't unusual to her. And she just... Like Andrea said, she just got it. She went, yes, there are a lot of needs. These are the needs and he should be seen for an autism assessment. And really ideally he should have another MRI, et cetera, et cetera. And it just confirmed everything I was saying and everything. And it gave me the backup to go back to school, back to health professionals that were a bit wishy washy and say, actually, no, it's not just me. A health professional has said this too. And it shouldn't be this way, but having a health professional confirm what you're saying goes a long way. And that is wrong. That is wrong. And that, unfortunately, that's the downside of the system. But.

Andrea: 25:38

Have you experienced, Lydia, we certainly had a real battle between our private and our NHS physio at the time, you know, basically the NHS physio was telling the school this private physio is just having them on, like it's not really real you know, we, this mother's crazy and she can't get over what's happened and, you know, I had a, I had a real struggle with that. Have you, have you had similar?

Lydia: 25:59

So yeah, I found that schools were very anti private reports and did everything they could not to put it into place. We have also seen an NHS OT and they were a bit dismissive about the private OT and they didn't really go into much about the HIE. But I think that's purely because they don't have the time and the resources to agree and If they agree, they've got to look into it and they've got to do something about it and they know they can't. And that's what I found personally. Yeah,

Andrea: 26:35

and I've certainly had some amazing experience of NHS professionals who are very willing to be upfront and say that, you know, these are issues he has and that just doesn't meet our threshold. We're, you know, overwhelmed, we can't see the children who need us even more than that. And therefore, you know, Noah just doesn't meet the cut and good luck to you and in a way that's just so much more honest. And it means that you can then. You know, it is, it's very frustrating if you don't, if you then have to pay for it yourself, and I know that for everyone it's not possible to do that either, so I'm kind of really aware of that too, but At least to have a sort of honest opinion, which is the difference between there is no need to help him versus we can't help him because of budgetary and time constraints and resources, all of those things. That's the piece that it took me too long to realize if I'm honest. And I was like, Oh my God, if we'd have known, like I would have found somebody in my family to help me I would have crowdfunded I would have done something to make sure anything, as I think most of us as parents would do to make sure that our child gets the help that they need, or that's going to help them to be successful in life and I am so keen for us to try and have that conversation more honestly with the people that can make the change that because I just think it's so

Lydia: 28:01

important. No, absolutely. I agree with you that, you know, my child doesn't meet the threshold for NHS services in most areas because he's not what they would class as severe. His problems are not affecting other people. They're affecting him internally and most services I don't see that as a problem sadly which I think is awful because although he might be internally struggling, that, that's not fair. And just because he's not affecting you doesn't mean he doesn't deserve support. You know, and, and like you said, Andrea, I'm really aware that we were very privileged to be able to get that private OT report. Most people can't. And I guess that's why I really wanted to help peeps because I can't help other people get a private report. But if I can help someone else be confident in their voice and say. No, I want this support for my child, then maybe, you know, that just goes a little way to someone else not having to fight the same, or as much.

Andrea: 29:17

Absolutely.

Sarah: 29:18

I think both of you are such keen PEEP supporters, which is huge. And you know, Andrea, you've supported with podcasts and various things. Lydia, you're one of our peer support volunteers. And recently, you've both been involved in Coffee Mornings. Bringing together, I guess, we're all part of the HIE community and, you know, peeps, hopefully people realize we're here to support anybody who's affected. We know how varied the causes and the outcomes can be, but I guess, just what does. What does that mean to you and what do you think it means to other people to find others who can really relate and, and get it from, from your experience? Lydia, you know, you, you kind of led quite a few of the Coffee Mornings and, and brought people together.

Lydia: 30:07

Yeah, so for me, finding others who feel the same, who have experienced the same has, is everything really. I don't think I could have processed half of what's gone on the last few years. I don't think I could have been confident enough to. Get the diagnosis that he needed in the support. If it hadn't been for other parents going through the same and the place I've learned most about what support is available locally, what to ask for, what to do is from other parents. I hate to say it, but other services are not giving us that information. You have to go to people who are going through something similar or the same and say, what do I do? What do I ask for? Who do I talk to? And I, I can't forget the people that have done that for me. And so. If, if there's someone that I come into contact with that is struggling the same way I was, I'm more than happy to give them all that I know because without each other, we can't get the support we need for our kids. Having somebody who understands this is for me the be all and end all. We can't do it without each other. We really can't. I have to thank those that went before me, and I have to

Andrea: 31:40

do it for the people that come after. Yeah. Oh, Lydia. I feel exactly the same way as you. There's there's been so many different people through the course of this journey that have really, you know, without them, I just couldn't possibly have survived it. And I think as well for me, the thing about, This particular group that we're trying to put together with these particular coffee mornings is we've called it the, the Betweeners I think it's always been so tricky to be able to talk about this group of of HIE children I'm constantly kind of finding myself feeling like I'm having this problem but the other people that are talking about the things that they're dealing with there's so much more. significant than what I'm dealing with. I feel like almost embarrassed to put up my problem because comparatively it feels so minor. And that's what's been so great in a way about the coffee mornings for me to have a space where I don't have to feel too guilty about talking about it because other people have been in the same boat and are also struggling with it and finding it hard.

Lydia: 32:48

I remember being on the coffee morning where we tried to give ourselves a name. And I said at the time for me, I felt in between was a good fit because. Ruben didn't fit that. The support that you see in most of the Facebook, HIE groups, I, I can't advise and I'm not asking for advice on wheelchairs, physical services physio, speech and language blended feeding et cetera. And I felt guilty coming to those groups with my difficulties, because they didn't really compare to theirs. Like, theirs felt so much more harder. Mine felt trivial in comparison. And although they're not, you know, everybody's experience is... important and relative to themselves. I didn't fit that support group. And then as Ruben got older, And I felt confident enough to join groups that were for special educational needs and just additional needs in general. He didn't quite fit that criteria either because although he is autistic and he has ADHD, he doesn't quite fit the picture like an autistic child that didn't have a brain injury. And so, you know, I could talk about my experience and his experience, but. There wasn't always that understanding. There were just differences. I just felt that we were in between all of those support groups. There wasn't really anywhere we truly fitted. But I knew there was this massive community of parents that were feeling the same. They weren't. just in the SEND world, if you like, or they didn't quite fit the HIE groups where the children have much more severe outcomes physically and medically. We were there. We just, we were in between all of those, and we didn't have something for us.

Andrea: 35:09

I think that's even more true for those parents with children who are at school age who had HIE but have yet to get any diagnosis at all because I think there's a lot of people in that boat and I, we only got Noah's autism and ADHD diagnosis last year and it was a really weird thing because I suddenly found myself. Like, like, oh, I'm in that club now, I've got other people, I can say, oh yeah, he's autistic too, I'm, I'm like you, because before that, I was always having to say, oh yeah, he's kind of got cerebral palsy, but I know he doesn't look like he's got cerebral palsy, and, and he's got autistic traits, but we're not really sure that they're gonna allow us to say that it's autism, and, you know, he's got sensory processing, but it's not really sensory processing, like, I was constantly, like, trying to explain what was wrong for him, was So complicated and I just know that there's got to be a lot of other parents out there in that boat who are pre any kind of diagnosis and yet still having a child who got, discharged at two or three and saying everything's fine now and hit school age and start to really struggle. So just, just to, to do this and to try and put it out there and say to other people in that boat with school aged children who feel like they're in between any kind of. bucket and therefore struggling to feel like they've got people they can relate to and people they can get support from. For me, that's, that's what we're trying to do here, I guess. Yeah,

Lydia: 36:33

absolutely.

Sarah: 36:34

And we did just have to tweak the name slightly because we felt that The Inbetweeners, whilst it's a very funny TV show and

Lydia: 36:44

film, can be

Sarah: 36:44

slightly inappropriate places.

Lydia: 36:47

Yes. So we just tweaked it a little bit,

Andrea: 36:49

didn't we? Yeah.

Sarah: 36:51

I'm mindful of time and just thank you so much both of you for for sharing so much. I think it will help lots of people and give a really good insight into things that maybe people aren't always as aware of. And I think. We can talk for a lot longer. I think it'd be great to do some follow ups and look at other maybe specific areas or things that you found really helpful. And so I guess if people do have comments or questions that they can get in touch. Also, if people have. being affected by anything or want to chat through anything. There's always support available and Lydia is just one of our lovely team of peer supporters. We have counselling and trauma therapy available as well that we can set up and arrange. I think our biggest thing is we don't want anyone to feel that they are facing this on their own. You know, you two have shared your experience of how difficult that is, especially in the early days. And we want to just reach people and support in any way we can.

Andrea: 37:49

Sarah, one thing I would really like to just say is that if there are people in education or health that happen to be listening to this, who can help us to start to spread the word and raise awareness of HIE, we're really keen to try and make change in that area. So if anyone happens to be listening to this and felt like they could point us in the right direction, we'd be really grateful. Fabulous.

Sarah: 38:12

So thank you both so much. It's been great to hear more about you and your, your two gorgeous boys. And yeah, thank you very much.