Talia Oatway Opens Up About Geordie Shore, Love & Motherhood

追加: 2026-05-17

[00:00:04]Welcome back to a brand new episode of Private Parts with me, Liv Bentley. This is the podcast where nothing is off limits. Make sure you subscribe and follow us wherever you get your podcast and you can watch every glorious episode on our YouTube channel which is at Private Pots Pod. Today I've got a very special guest joining me on the sofa.

[00:00:22]It's Talia Oatway.

[00:00:26]>> Welcome.

[00:00:27]>> Thank you. Thank you for having me. I was um I just read the top thing you said, "Have we ever met before?" I don't think we have ever met before.

[00:00:31]>> No, we haven't.

[00:00:32]>> Part of Never Cross cuz I haven't been up to Newcastle. Even though my brother is at uni there.

[00:00:36]>> Oh, really? You need to definitely come up there.

[00:00:38]>> If I went on a night, it might kill me up there to be honest. It is quite wild.

[00:00:40]It's wild, isn't it? Wild. Yeah.

[00:00:42]>> I Two of my siblings, my brother's there now, but my younger sister went to uni there and she used to spray herself in deep heat on a night out to keep herself warm.

[00:00:50]>> Yeah. That would Well, I've not heard of that, but it is very Baltic up up north compared to like down here. and look so cold >> and the party seems quite mental.

[00:00:59]>> Yeah. And when you go out obviously you think, "Oh, I want to look all nice."

[00:01:03]But actually freezing.

[00:01:04]>> No. No. I don't know how cuz I love seeing clips like girls go out and like mini mini skirts, high heels. I wouldn't even do that in London.

[00:01:10]>> Yeah. Uh it is like that.

[00:01:11]>> Is it?

[00:01:12]>> I'm probably one of them actually.

[00:01:14]>> I rate that though. Like honestly I think the last time I ended up in a club I was wearing my trainers and I was like [ __ ] me. I'm too old for this. Although I wouldn't mind bringing the clubbing days back.

[00:01:21]>> Yeah.

[00:01:21]>> Getting old getting pissed. Okay. So for anyone listening who may have not watched Jordie Shaw OG's can you explain how you fell into it and why?

[00:01:31]>> Um so my kid's dad's Aaron Charmer's um he was filming Jordie Shaw.

[00:01:36]>> Yeah.

[00:01:37]>> Um for quite a while when we were together and then he come out of it. he started focusing on his boxing and then Jordi OG's just come around and they just basically said they wanted to film my lives um and make it less like I never watched Jordi Shaw so I didn't really understand at first what >> it was >> it was no obviously like back in the day like there was Tawi there was obviously Made in Chelsea and then there was Jordaw but I didn't really watch that so I didn't really get it but then this whole thing about they wanted to sort of not do the whole them going get drunk and film it. They wanted to try and do it as like their their growing up.

[00:02:15]>> Um, so >> like a few of them got selected to like follow their lives around and follow our journeys and that's how we fell into it.

[00:02:23]>> How did you meet?

[00:02:25]>> Um, quite a funny story. My friend was filming for another program and she was with this bloke that was on the program as well. Um, and they had like a big get together in Essex, like a rap party. And I never ever left like West Sussex where I was living. And um, eventually I just thought, you know what, I'm gonna go.

[00:02:44]>> Aaron wasn't there, but he was friends with one of the boys that my friend was with. And he was on the phone to him and was like, who are you with? And that was it. And then he just slid into my DMs DMs. So, I didn't think it was going to be anything serious to be honest because >> I don't know just obviously my friends knew who he was.

[00:03:03]>> Um, and I just thought, "Oh, well, if that's his background, it's never going to be anything serious." And yeah, that was >> Did you um when you first started dating, did you find it like cuz he was very wellknown, wasn't he?

[00:03:14]>> Yeah. He was like in the peak of the Jord, I would say.

[00:03:19]>> Did you find it when you first started dating, did you find it odd?

[00:03:21]>> Uh, yeah. I I found it quite difficult like cuz my daughter was probably like three or four.

[00:03:27]>> Okay.

[00:03:28]>> Um like when we'd go out and people would like stop and be like, "Can we have a picture?" or "Can you take a picture of me and him?"

[00:03:33]>> You know, like that. And yeah, and I felt and obviously Sienna didn't have a clue what was going on.

[00:03:39]>> Um and then I think one day she asked Aaron actually, "Why do people take pictures of you?"

[00:03:45]>> And I and he was just like, "Oh, they just do."

[00:03:48]>> And then he started going into fighting.

[00:03:50]So then obviously she sort of knew that he was doing boxing and MMA. Well, it was MMA at the time. Um, and she realized through that >> as a girlfriend, just out of curiosity, did you find it hard watching fight?

[00:04:00]>> Um, to be honest with you, do you know what? I was watching the Paris Fury documentary the other day and I really related to their relationship. I really related to like her opinions and someone asked her that question on the show and that's exactly what I used to say to him. They asked her like how do you go and how do you watch it? I would rather have been there when he was going through that and know that if he's going to hospital, I'm there.

[00:04:23]>> Yeah.

[00:04:23]>> Than actually me sitting at home and watching him on TV going, "What's going on? What's going on? Someone ring me."

[00:04:29]You know, I wanted to be there. Um they did film quite his fights were on TV like quite big platforms and stuff.

[00:04:37]>> Um so that bit I was a bit like, you know, it was a bit daunting for me, but I it was a it was a really tough like lifestyle. I would say like >> I don't know. I don't know how you do it. I'm not like I just don't I well what I'm I don't know to I always admire like I've got mates who date sportsmen and the dedication they have to dedicate to that. It's mental to be the like woman in that picture. You have to be like >> you've got to make sure that like when >> their emotions are up a height when their like anxiety starts. You've got to be there when they're when you're meal prepping. I used to meal prep all of most of Aaron's food. Like everything had to be weighed. It had to be like we did have a nutritionist that would say like oh this amount of carbs, this amount of protein. Yeah.

[00:05:18]>> Everything had to be weighed like come if you couldn't be bothered to go to the gym right come on you need to get up like you know that sort of stuff.

[00:05:25]>> You you've got to be because >> if you if you're not like that in their foundation at home like they're going to struggle and then it's it's going to impact their fights. So >> how quickly from when you first started dating to then doing the fighting? How many years was that?

[00:05:39]>> So he had his first fight when we were talking. So I think it was Aaron's 30th he had his first fight in Birmingham. Um and then after that he had a big one in London which is the one I went to. Um and so it was literally why we were talking it was starting if that makes sense.

[00:05:56]>> Um but that's when he started to take it really seriously and he come out of Georgia.

[00:05:59]>> Bloody hell. And then and then um let's more talk about you know then Aaron. Um when did you make the decision that you would do the OG's?

[00:06:08]I think it was just like I was doing a little bit of social media at the time.

[00:06:13]Yeah.

[00:06:13]>> Um >> I don't think I wasn't pregnant with Romeo in my first series. Um and he just said, "Look, it's an opportunity. Why don't we see how it goes?" And he had never done anything like that. He had always done the whole they go in the house, they drink for what is it, 6 weeks, they come out for a couple of weeks, then they might go back in again.

[00:06:31]>> He had never done anything like that either. Our first series was tough because we were working, we were filming long hours and long days. Um, but then as the series went on, it got a lot easier. And especially when we had the boys, when you've got kids filming on TV, you're only allowed to film for a certain amount of hours a day. There has to be a chaperone. It has to be timed.

[00:06:49]>> And it was fine.

[00:06:51]>> And it wasn't as if they were like filming stuff that was fake. It was >> we they were doing things that we wanted to do. Like they were filming they filmed one of our births, but it wasn't like physically the baby coming out. But um yeah, they filmed Maddox's um >> quite amazing to now have that on like not on record but like to actually have that first series.

[00:07:08]>> Yeah, it was it was I really to be honest I did enjoy it. The first series like I said was really difficult and I'd never done TV in before. I didn't know what green screen was. And when I've seen clips like of years ago, you know, like sometimes they might come up on Instagram.

[00:07:23]>> Yeah.

[00:07:24]>> And I just think like, you know, like the green screen stuff and it's like they're like, "So, how did you feel in this in this particular time?" And and then you've got to sort of as if you're as if it was that time.

[00:07:34]>> Yeah. Yeah. Yeah.

[00:07:35]>> Like it's horrible.

[00:07:36]>> So I had to do it for Go Dating and they would give you what to say and I was like, I can't do this. And they made mine like sound like some posh wanker and I was like, can we not have this?

[00:07:44]Like it was horrific. and I can't understand the whole past, present, and future thing. So, like me trying to talk about as if messages with my head.

[00:07:55]>> I always ask people this, but when you do like reality TV and you're in a relationship, do you think your it affected the relationship you had with Aaron or in a negative way?

[00:08:04]>> I would say one of my series was very difficult I found because we were going through a really tough time. Aaron was going through a tough time with alcohol.

[00:08:15]um like on and off. I think it might have been through COVID, I can't really remember. And we had to go through therapy on the show >> and a counseling session. And I think it was frustrating for me because I >> when we first filmed, I wanted to watch what they were showing.

[00:08:31]>> Um as the series went by, I weren't bothered by what they were showing. I wasn't wasn't bothered. But at first, I was really worried about what the public or how people were going to see me as.

[00:08:40]>> Yeah.

[00:08:41]>> Cuz I hadn't ever done anything like that before. I think that is natural when you first do TV.

[00:08:45]>> Yeah. Like if I got had to go on if I went on a TV program again, I would never watch what I'd film because I know that the editing I know what I I just wouldn't be bothered. Like I know who I am. Why do I need to prove it to anyone else?

[00:08:58]>> Um >> but I think that series I found really difficult because I felt like what got portrayed wasn't everything that was going on.

[00:09:05]>> Um and I think that really did affect our relationship to a certain extent.

[00:09:10]Have you ever felt like compelled to say on Instagram what has actually happened or like have people ever not trolled you but have you ever got backlash on something and you're like well hang on a minute that is so not how >> I fell down that hole quite a few times.

[00:09:21]Yeah, definitely. Um when me and Aaron have had separations in the past and then it's become public knowledge. Um and then you know he might post something and then it gets my backup and I'm like well that's not what's going on. And then I fell into that trap so many times because it's like I don't know like he he he would have said exactly the same thing. We both are as bad as each other when it comes to that because it's like you try and get your point across and you don't want to be seen in a certain way because you do get all these people following your lives and people think they know you and they don't know you. They think >> you don't think they can give a [ __ ] opinion and judgment and then you're like well hang on you barely know what's happened here.

[00:09:56]>> Yeah. And we had obviously we've got kids in this and I started to realize that you know my daughter was going to high school. Well, she's at high school now. I've got two boys that are in school and then obviously I've got Oakley as well. But >> my kids are going to grow up and whatever I put on the internet, >> the press get hold of it sometimes and it's like it gets turned into this massive drama which hasn't been said or or portrayed like they portray in a certain way >> and then it's like my kids are going to read that.

[00:10:24]>> Yeah.

[00:10:24]>> Do you know what I mean? Because once you put something on the internet, it's not it's never deleted.

[00:10:27]>> Yeah. Have the tr the trust the press ever done like done you dirty with anything and written something that's completely out of line?

[00:10:34]>> Yeah, they did with my son.

[00:10:36]>> Um they actually posted that um something about Oakley being unwell in hospital and then they put his deadly diagnosis >> and I was absolutely mortified. Um so >> what are they allowed to put the legally allowed to put that? I don't think >> they that's what they put. Bearing in mind the word deadly diagnosis has never come out of my mouth. maybe a diagnosis, but never a deadly diagnosis. And as for me, that's kind of like, are you saying that his diagnosis is killing him? Like I I didn't know how to take it. Um but that is the one thing that actually did get removed.

[00:11:08]>> It did.

[00:11:08]>> Yeah. Because Emma um pushed was like absolutely not. Like this is not I was so annoyed.

[00:11:15]>> How does it make you feel when articles written about about your kids? I find it hard because it's like if they had come to me right and said, "Look, we know Oakley's in hospital."

[00:11:25]>> Yeah.

[00:11:25]>> When he's out of hospital, can we ever catch up and we put something out there so it's spreading awareness for other children for with your child's condition? Absolutely.

[00:11:34]>> But the fact that they don't do that >> and they use it as clickbait stuff.

[00:11:37]>> They do.

[00:11:38]>> It's kind of mental that with a child you can get away with doing that. I didn't know like I don't know. I thought it was stronger on that. There should be some sort of law in place surely. I think their thing is if I'm putting on social media, they can then take it off social media and put it in their words, which is what I don't like. If I put something in on social media, they should be able to take it word for word, >> but they shouldn't be allowed to put their own words into it.

[00:11:58]>> No. Like their own opinions. It's mental. While we talk about it, can you explain what Oakley's condition is?

[00:12:03]>> It's quite a long story, but basically um a lot of people ask, did I know Oakley was disabled? The answer is no.

[00:12:10]>> Yeah.

[00:12:11]>> Um when I was pregnant, I had cancer cells in my cervix when I was young.

[00:12:15]>> Right. So I had like laser treatment.

[00:12:17]You know when you have like the jabs at school, you must have had them when you were they've stopped them now, but the cervical cancer ones >> I kept getting like these cells. So they kept getting removed. Um so my cervix was very short.

[00:12:29]>> So with the three boys I they kept trying to give me a stitch, you know, like so your bed bound to hold the baby in. Oh my god. And I was like absolutely not. Cuz Aaron was trailing down south.

[00:12:38]I had the kids. I had we had bloody puppies, dogs, we had everything. And I was like, I can't do that. So anyway, when I was pregnant, I used to have to be on like this plan where I was seen every 10 days where they do like a swab to check if you're going into labor.

[00:12:52]>> Okay.

[00:12:53]>> So this one particular day, they said to me, can you go into fetal medicine?

[00:12:57]Which is like if there's a problem with the baby, you're seen in fetal medicine.

[00:13:00]>> And I was like, well, why? And they were like, oh, it's just because there's no appointments in the normal clinic. And me and Aaron were flying to Cyprus at the time. So I needed to get this letter to be like, I can fly.

[00:13:09]>> Yeah.

[00:13:10]>> Um, so went into fetal medicine. and they done like um anatomy scan which is obviously your belly. They're not supposed to do that until after 20 weeks. And I was like, "Oh, you're doing anatomy scan." And they said, "Oh, it's just because you're in here, so we normally do it if you've come in here."

[00:13:24]And I was like, "Right, okay." And I I thought something was up. And she went, "I'm going to be back in a minute." I was like, "Is everything okay?" And she was like, "How far along at this point are you?"

[00:13:32]>> 17 weeks.

[00:13:33]>> Just 17 weeks.

[00:13:34]>> Yeah. So I was like, "Well, something must be wrong." My heart started pounding. She went out, went and got a specialist. He come in and he was like, "We think the box of the brain's missing." So, you get a box at the brain at the back which sends signals like to either side of your brain. We think that's missing, but it could be because you're too early, >> right?

[00:13:52]>> And I was like, "Right, come back in a couple of days later and have a MRI."

[00:13:57]So, obviously, I [ __ ] myself, went home, went for the a couple of days went by, went for the MRI. Um, and then they said, "Look, you need to come back in 4 weeks time." So me and Aaron were like, "Well, what are we going to do?" Like for four weeks chewing on this. Yeah.

[00:14:13]>> Yeah. And like not knowing what's going on. So we went on holiday, come back, >> um, and had the MRI. Everything was fine.

[00:14:22]>> Discharged me.

[00:14:23]>> Discharged me from fetal medicine. So I was like, "Oh, amazing. I can enjoy the rest of my pregnancy." I had the biggest shock of my life when he was born. Like I It was horrific.

[00:14:32]>> How did they not pick up on that?

[00:14:33]>> Bearing in mind Oak's condition, he's got a syndrome. So that was the first diagnosis >> which means his bones are fused. So when people look at his hands they think he's got webbed hands and he hasn't. He's got the bones are stuck together.

[00:14:47]>> His skull was stuck together. So you know babies have got soft spots. So like the soft spots there so the baby's head and brain can grow. He didn't have that.

[00:14:55]So his brain was getting bigger.

[00:14:56]>> His head wasn't >> but his head was So his head was getting long and long and long like that. His feet are like that too. Um he's got a cleft palette as well. So like the roof of his mouth. So that was the first initial diagnosis.

[00:15:10]>> So >> and this is once you've given birth.

[00:15:12]>> Yeah.

[00:15:13]>> So but during from the 16 weeks up until that they didn't pick up on anything.

[00:15:16]>> Nothing. I was discharged.

[00:15:18]>> I'm But is that like can you go not go after them for that? But did you say anything to Mar? Like how was it?

[00:15:24]>> Every apert because there's only 50 children. I think it's around 50 kids now in the UK with his condition. Not one person, actually one family I've known that they've known that the babies had a perpet syndrome. And me and Aaron didn't find out the sex with Maddox or with Oakley. We wanted a surprise.

[00:15:41]>> So, we had our 4D scans and like when you're pregnant, you put these videos and pictures up and you're like, I put a scan picture up and I still remember, right?

[00:15:49]>> I put the scan picture up and I was like, what do you guys think? It's going to be a boy or girl? It was a 4D scan and um obviously when the baby was born I didn't come out with Oakley's diagnosis for 8 months. So everyone knew that Oakley was born but no one knew what condition he had >> and I was still digesting it. Me and Aaron were going through a terrible time. I Oakley wasn't doing 10 days at home. He was ending up in hospital or getting ambulanced in. It was horrific and I just thought what the My whole world come crashing down >> and I was like what the hell am I going to do?

[00:16:21]>> Yeah. Um, so this picture was on there and I had to remove it because when he from the moment he was born up to me announcing I think he was six or eight months I come out of his condition. Um, the amount of people that was commenting going you can see the baby's got Down syndrome, you can see the baby's got this and I had to remove the photo, you know, because I remember thinking like it's now I look back at Oakley's 4D. No 4D scans look great. Like the babies are at different angles like it's just they're just plenty. They look pretty bizarre.

[00:16:54]>> So, I never ever thought that there was something wrong with Oakley.

[00:16:58]>> And obviously when I've looked back and looked at Oakley's, Maddox's and Romeo's, I didn't have any of Sienna's cuz they were obviously years ago. I can see his heads a different shape. You can see the bone that was there. Like his forehead was very long >> really.

[00:17:15]>> Um, which is part of the condition.

[00:17:16]Their heads look >> very similar. like their characteristics are very similar.

[00:17:22]>> And like even their hands, like you're supposed to get a scan where it's like, oh, there's 10 toes and 10 fingers.

[00:17:28]>> He had that counted. Like they couldn't have been further from the truth because Oakley's had X-rays on his hands and it looks like someone's got a load of bones and just gone like that. They were just all over like I'm so confused as to how the hospital like no one actually picked up on any of this stuff. I'm I'm I still haven't come to terms with like why and how, especially because I was seen every 10 days. I was in fetal medicine. I had two for I had 4D scans in fetal med and two MRIs and nothing was picked up >> really. And other women that you've spoken to whose kids have suffered with this, have they did they have a similar experience in terms of how that was picked up? And it was just when they were born they realized.

[00:18:04]>> Yeah. Um, so there's a woman that I speak to that I'm quite close with that lived down south and she's actually had twins of apert syndrome, >> which has never happened in the UK and she had no idea. Um, >> and do they know what it stems from?

[00:18:18]>> It's apparently it's a genetic condition. So it's like the hospital said to me, the genetics team, it's like making a cake.

[00:18:24]>> So you make a cake and you've forgotten the sugar. It will come out like a cake, but it won't taste like a cake.

[00:18:29]>> Right.

[00:18:29]>> So it's like genetics together. There's been something that's missing. Still made the baby, but there's been something that's missing.

[00:18:37]>> And it's not as if it's like genetic as in like Aaron carries a gene and I carry a gene. It's just happened. But if Oakley has a baby, >> it will be with a woman without a per syndrome. It will be a 50/50 chance that he will have an apert. If he has a baby with an AP woman, it will be 100% an AP child.

[00:18:54]>> Got you. And h how is he like daytoday?

[00:18:57]>> He suffers a lot. Like I'm not going to lie. like he's a happy boy, but he's got like he had a really really bad fall where he nearly died, not last year, the year before in Liverpool. Um he went for a routine apert operation, which would sound crazy to you, but basically they pull the forehead off, they break it into pieces and try and stick it back together to try and give his brain room to grow outwards.

[00:19:22]>> Yeah. Um it was supposed to be a routine um like operation for an apert child which is supposed to be a very big surgery but >> cuz it's cranio facial they're like taking the bone off the brain.

[00:19:36]>> Um and we were down there 7 weeks. He went into intensive care. He went into sepsis shock. He had menitis. Um he had I think it was a total of five surgeries in the end >> and he's developed um fluid on the brain now. So, he's got a permanent drain in his brain.

[00:19:52]>> I'm so sorry.

[00:19:53]>> Yeah, it's just been like >> How do you like hold it to like keep it together? Because you seem very not I mean, you know, I don't know what goes on today, but like you seem very strong about it.

[00:20:02]>> I think you've just got no choice.

[00:20:04]>> I don't cry. Don't you make me cry. It's awful. Like, it's just so sad.

[00:20:08]>> I think it's just anything with um Oakley like it just triggers everything.

[00:20:12]But >> this is the whole point of wanting to do it because people don't see what actually goes on.

[00:20:19]they just see like a picture of him and like oh he's fine. I think like for me when Oakley first had his so we're under two hospitals. We're under old which is the biggest one of the biggest children's hospital in England.

[00:20:33]>> Yeah.

[00:20:34]>> Um we had the option for Great Orman Street or to oversee his care but also I'm under Newcastle. Um, when I first went down there, Oakley was a couple of months old and I was still like convinced there's something wrong.

[00:20:49]Like, as in how how have they got this wrong? Like, how so wrong? Like, my child in my belly, they told me he was fine.

[00:20:56]>> Yeah.

[00:20:57]>> And then he was born and he's he's not fine.

[00:21:00]>> So, I went down there and I remember thinking like and saying to them like the spectrum is obviously very wide with Apert syndrome. There's children that, you know, unfortunately don't make it through adult life. There's children that go to university. There's children with, you know, that can't move. Like this this the spectrum is quite wide.

[00:21:21]And I remember saying to them like, "Oh, Oakley's like not at the higher end of the spectrum, though, is he?"

[00:21:26]>> And I remember them saying, "Well, he his respirator is at the higher end of the spectrum and Oakley's a very complex child." And I remember leaving and I still say to the consultants now, cuz I love the consultants there. I said to them, "I called you both assholes."

[00:21:38]>> Cuz I walked out of the hospital thinking, "My son isn't very like at the higher end of the spectrum."

[00:21:44]>> Yeah.

[00:21:44]>> And then obviously as time's gone by and Oakley's got older, he is >> his breathing. Like he's got a tube in his nose that's like 7 cm long and that keeps his keeps him breathing >> and he can pull that out >> and you've literally got to put it back in. Um, >> so are you full-time do you full-time care for him or do you have like >> So we get like um nurses that help but I'm like the full-time. So like I do obviously all night um with him. He's on ventilation too. So like that's a machine that breathes for him. So if he forgets to breathe, the machine breathes for him >> because he can't sleep and breathe at the same time.

[00:22:18]>> Um so like you know when you see kids in intensive care, they've got tubes.

[00:22:22]>> That's that's ventilation. So he has that um at night now all the time.

[00:22:27]>> And does what with his condition like can it can it get better or will everything basically just stay the same?

[00:22:34]>> I think Oakley has got worse. So like when he was born he come out of hospital with an NG tube which is do you know you must have seen kids with um you know like where they give the milk through breathing uh a milk tube.

[00:22:44]>> He had just that 3 days later from Oakley being discharged. So we were in hospital for two weeks. Three week three days later me and Aaron were in bed and I said and he was next to me the baby.

[00:22:54]>> Yeah.

[00:22:54]>> And he was going and I said I woke up and I was like there's something wrong with him and he was like what do you mean? What do you mean? I was like I'm telling you now there's something wrong with him. He's not breathing right. So I took him downstairs and I just I found I didn't know what to do cuz I was like I can hear him breathing and I can see him breathing but it just doesn't look right. It was like something was telling me there's something not right.

[00:23:17]>> Yeah. So I rang the ambulance. The ambulance turned up and he got rushed in and he ended up in emergency theater.

[00:23:23]That was so he was 2 weeks old and then that was 3 days later. That was his first theater and he come out with two stances. That's when he come out with two tubes in his nose. And they told me they would be there for 12 weeks and they said he can't breathe properly.

[00:23:35]He's his airways are too narrow. Um and I was like what do I do? And they were like you take him home with the tubes in. And I was like >> terrified. Oh, I'm telling you now, it took me a long time to cry.

[00:23:48]>> Yeah.

[00:23:49]>> It was like cuz I would try and get over one thing and bosch I would end up back in hospital >> and these tubes I wasn't trained in putting them back in because he was so tiny.

[00:23:58]>> No, I don't.

[00:23:59]>> Every time he snuggled into me.

[00:24:01]>> Yeah.

[00:24:01]>> They would come out. So, you were rushing him straight to the hospital. He ended up in um in theater I think four or five times within the first couple of months just trying to put the tubes back in because even the doctors couldn't do it. One day I walked Yeah. It was just horrific. One day I walked into A&E.

[00:24:17]They rushed as soon as they come in. He come in there. Everyone was rushing >> cuz really >> his his diagnosis isn't like textbook >> like anything can go wrong at any point.

[00:24:28]It might say that with his condition all children have X Y and Zed. He's always he's always worse.

[00:24:35]>> Yeah. And that's what's been hard to deal with is because the hospital have always been like, you know, here, walk here, talk here, do this, here, do that.

[00:24:42]And I always say, don't tell me things.

[00:24:44]>> Yeah.

[00:24:45]>> Because you tell me things and that they don't happen.

[00:24:48]>> Um, and I have struggled with that because he's got brain damage, too, from what happened to him.

[00:24:52]>> Um, he's non-verbal autistic as well. I knew from 6 months old he was autistic, just having other children. And you shouldn't compare being a mom, but you can't help it when you go into the medical world because you're like, is this a normal thing or is this not a normal thing?

[00:25:07]>> Yeah.

[00:25:07]>> And like I say to the nurses and doctors, you choose to be here. You choose to do this job. You get paid for it.

[00:25:12]>> Yeah. Whereas for you, I >> I don't choose to do this job.

[00:25:16]>> Um and I think that's what's been hard.

[00:25:19]I've had psychology now for I think Oakley was about 3 or 4 months old. I started with that.

[00:25:25]>> Yeah. uh through the hospital and they're part of Oakley's cranial facial team in Liverpool and I think the poor woman needs therapy as well to be honest as well because I literally tell her my life story. I'll talk and talk talk and talk talk and then she go right okay times up to see you later >> but um I am starting EMDR next week.

[00:25:45]>> We have literally just had a guest on who does who does sessions.

[00:25:49]>> Well, I don't know much about it so don't ask me what it is.

[00:25:51]>> No no but it I'll be honest. It sounds [ __ ] amazing. Yeah, I'm starting that through. So Anna's my psychologist and there's another lady part of the cranio team which is called Katie and she she's there's only certain specialists that are trained in EMDR >> and she was like telly I really need you to do this >> like it's really going to help because all the trauma you've gone through.

[00:26:12]>> Can I say something? It's it's actually like even just like listening to you talk is so much. Don't know how you do it.

[00:26:17]>> The shock to the system and then also the fact that you have other kids as well that you've got to like look after.

[00:26:21]>> Yeah. I think that's what kills me is the guilt. But what do you feel what guilt over that you give so much more time to Oakley?

[00:26:28]>> Yeah. And I think because like they don't get it, >> but they will get it. I think they'll get to an age where they do understand it. And I don't think they would want it any differently.

[00:26:37]>> I think like when's in hospital like my daughter suffers suffers quite a lot.

[00:26:41]She's older.

[00:26:43]>> So for her, she's like like I think not last year the year before when he was in for seven months uh 7 weeks. She said to me, "But you told me 5 days." And I'm like, I know I told you 5 days. Um, but like I didn't want to say to her when I was in Liverpool, your brother's dying. Like I I don't know what to do. Um, my mom was amazing for it. My dad like my mom and dad were like taking turns and like helping and stuff, but cuz they live in Brighton, you see, and I live in Newcastle.

[00:27:13]>> So, you know, my dad driving up takes him It took him 9 hours before.

[00:27:18]>> Yeah. Um but like they've gone up and up and down Liverpool as well. Um and like my dad won't miss an operation if he's in Liverpool. My dad will take time off before I can be there.

[00:27:29]>> Yeah.

[00:27:30]>> Um but I think it's just that the guilt eats me alive. I think because >> you can't there's nothing you can like don't put it on yourself.

[00:27:39]>> Not that I'm in any position to give any remote advice, but I just think you like you feel I feel like you've given yourself a hard time enough. Like I don't think >> I think what it is I think even if I didn't have a child of additional needs when you've got more than one child you feel like oh I'm not giving enough attention to that one or this one's playing up and I need to do this more.

[00:27:56]You you have that anyway but then when I went into the medical world it was like wow >> like it's another level of guilt of my other kids miss out or like they couldn't just go on holiday. Do you know what I mean?

[00:28:08]>> Where before they could have. Yeah, >> Oakley would never ever one probably get insurance to go on holiday and two I'm just not there as in like I'm comfortable for taking him away.

[00:28:19]>> That drain in his head can just stop working at any point.

[00:28:23]>> So if that stops working, you've basically got 4 hours they've told me to be able to get him to hospital to get the drain out to put a new one in.

[00:28:31]>> But where I live in Newcastle, >> they haven't really been supportive with the neuro department there. Um and I would have to go to Liverpool. So, I live in Newcastle. I need to get to Liverpool in four hours, and this is with a child that doesn't speak to me >> to say, "Mom, my head hurts." Or there's no there's not really much signs. Like, there's there's sickness and um headaches. He can't tell me he's got a headache and he's got a sickness condition.

[00:28:55]>> So, it's like, "Well, how do I know if he's if if it's not working or not?"

[00:28:58]>> Do you find that like any remote sort of anything from him, you're suddenly like, "This could be this or this could be that." Like, you just panic.

[00:29:04]>> Two days ago, his CVS started. So, he didn't have CVS before he had that menitis. This is another another thing that he's got because he developed menitis.

[00:29:13]>> Um, so he'll be sick and when he's sick, he's constantly sick, sick, sick, sick.

[00:29:17]But you've got to take that tube out, >> replace it, clean it, and put it back in. Cuz if that blocks were sick, he can stop breathing.

[00:29:24]>> And when he does it at night time, he's on home ventilation, so he's got a mask over his face, the tube in, and this is a child that vomits, but can't sit up when he vomits or turn his head. So he's he goggles it, so he chokes or he aspirates. So I panicked because um in November I had to phone the ambulance, get him blue lighted in. He went into recess because they thought his shunt wasn't working because his sickness condition was that bad. He was in 8 lers of oxygen and couldn't breathe.

[00:29:50]>> Are you home alone with the kids?

[00:29:52]>> So I have like nurses that come in and out that will help. But at night time obviously I've got like Yeah. It's just you.

[00:30:00]>> Yeah.

[00:30:01]>> Bloody hell.

[00:30:03]>> So that is that's a lot.

[00:30:05]>> Yeah. like you're very brave. Would um would he ever be would they ever be able to like him would he ever be able to live in a hospital?

[00:30:15]>> So he lived in hospital for seven months once.

[00:30:17]>> Yeah.

[00:30:18]>> Um and it was a lot but it would just be like cases where he's really unwell and then he ends up in hospital and then we're there but not like physically live.

[00:30:29]>> You're there. Yeah. When you went into labor, what was that experience like?

[00:30:34]because obviously you've had other kids so you know what it's like but were you just like yeah can you just explain to me what happened >> so like me and Aaron always had this fantasy about having a big family like I loved being pregnant he clearly liked making the babies I like um caring for them >> and it was kind of like I loved the newborn stage and then when they sort of were up their feet that was his sort of like bit you know what I mean like I think most men are quite like that >> um and we were so excited like my waters went with all three boys early because of me having a short cervix.

[00:31:06]>> Um, so I was in hospital I think for like a week. Um, cuz my waters went but I weren't contracting or anything.

[00:31:13]>> Um, and then my labors have always been very quick with the kids. So I think it was about 2 hours >> and me and Aaron were in delivery suite and I'm on the gas and air and whatever and I still remember right cuz have you ever had gas and air for any reason?

[00:31:27]>> Well the dentist loved it.

[00:31:30]>> Happy gas.

[00:31:31]>> Is it called gas? I don't think they give it to you anymore, do they? No.

[00:31:34]Yeah.

[00:31:34]>> Um, so I remember like sucking and we obviously dead excited cuz we don't know what happened either.

[00:31:40]>> Like we we both wanted a girl. So, um, I remember sucking the gas and air, sucking the gas and air. And I remember them saying just like one last push and the baby was out. But I kept still sucking the gas and air. And I remember Aaron going, "There's something wrong with the baby. There's something wrong with the baby." But I was still sucking the gas and air because you think you're out. You don't know if at this point I still don't even know if the baby's out cuz you're that away with the fairies.

[00:32:04]>> And I think he even tried to take the gas and air off me cuz obviously he seen the baby first.

[00:32:08]>> Yeah. What did he look like when he first came out?

[00:32:12]>> We you could tell Yeah.

[00:32:14]>> Um Aaron says to me I don't think he's ever got over that because Aaron's always done like the skin-to-skin thing.

[00:32:22]>> Yeah.

[00:32:23]>> One, I'm still having my high with the gas and air.

[00:32:25]>> Two, I want to quickly get washed and get sorted down there. Yeah, >> cuz obviously you'd quickly done the show and then you probably get back on the bed or whatever, but Aaron's always done that.

[00:32:33]>> Yeah.

[00:32:33]>> Um and he's always wanted that and I've liked that for him.

[00:32:37]>> But I think he still that still like tortures him >> really.

[00:32:42]>> Yeah. Cuz when we do when we've had deep conversations in the past, he said like you'll never understand like that feeling because they gave him the baby and obviously his hands were out but Oakley's hands the best way to describe him were like that.

[00:32:56]So the thumb was sort of attached but hanging out but the rest of it was like >> like he had one hand one thing uh one it was like all together stuck together.

[00:33:05]>> Yeah.

[00:33:05]>> But you could feel like bones but they were all over and his head was very very different. Uh his forehead was very prominent and his eyes were very out.

[00:33:15]>> Yeah.

[00:33:15]>> You could see >> something.

[00:33:17]>> There was something wrong.

[00:33:19]>> Um and I think Aaron was going there's something wrong with the baby's head.

[00:33:22]There's something wrong with the baby's head or the hands. he said and I think it was very quiet and normally they're like oh congratulations blah blah blah but two of them went out the room they must have called someone to say like you need to get down here >> um and then were you when when did you suddenly clock it like when when the gas had worn off were you like hang on what's actually going on here >> I couldn't cry I just went like I was in total shock >> and my friend had the kids the the boys were only toddlers >> so my friend had the kids and Sienna at home cuz we had no support in Newcastle whatsoever.

[00:33:57]>> So Aaron left and I was in the delivery suite still with the baby, not knowing what was going on. They left me in the room and I was just like I I I I was in shock. That was the most like awful experience I think I've ever been through. Um because we've always loved the whole baby ble bubble. Like you used to get so excited to have that baby bubble again >> and it was gone. Like I didn't have it.

[00:34:22]Um, and Aaron left me in the hospital and my mom still got the voice note on her phone of him saying like, "You need to get up to Newcastle. There's something wrong with the baby." My family were all ringing me. I didn't pick up the phone for about a week. I don't think my mom turned up to the hospital the next day and I didn't even know how she got there cuz I hadn't told her the baby had been born.

[00:34:44]>> But obviously Aaron had said, "I've had to ring your mom. I I don't know what to do."

[00:34:48]>> Oh my god. Um, and my mom flew up straight away and just walked in the hospital. And I think that was when I was like I just burst into tears. And I remember them kept te taking the baby out to like where the nurses station was.

[00:35:00]>> And I think it's because they knew I was just like >> it's like my my soul had left my body. I was there but I wasn't there.

[00:35:07]>> Did you have that like I've never had a child so I don't know. But you know when did you have that like did you not that you didn't have love towards him but were you so in shock about everything that you just didn't really know?

[00:35:16]>> Yeah. I was just like I didn't know what to do.

[00:35:19]>> And how long until they gave the actual did they figure out the diagnosis?

[00:35:22]>> It takes I think it was 40 days for genetics testing to come back.

[00:35:25]>> 40 days.

[00:35:26]>> But there was already a neonate consultant that come to see me that said the baby's 99%. My mom worked in a in a send school when when we were kids.

[00:35:35]>> Yeah.

[00:35:35]>> And um my mom said to me as soon as she walked in, she went that baby's got a syndrome. And I went what do you mean?

[00:35:41]She went that baby's got a syndrome.

[00:35:42]I've I've met a child with that condition because you know like down syndrome children have got very similar characteristics >> apert children do.

[00:35:49]>> So like my friend Sarah that I met through the hospital her child's got a per syndrome >> and he's eight I think or nine >> and when we laugh now and we send pictures of like Oakley now and she send ones of Ka back when she he was that age and we're like god they should be twins cuz she's actually got twins but one of them doesn't have a per and one of them does. So back when my mom said that I was like what you talking about like cuz I'd never seen a child with Apex syndrome in my life >> and I was so naive and I don't know whether it was because like we had this perfect life we had this you know we were filming programs we had money coming in we you know >> but you also had other kids that had other kids no problems whatsoever.

[00:36:29]Maddox was 6 weeks early, had an NG tube, in hospital for 2 weeks, discharged. That was it. That was the biggest thing. And even then I thought, "Wow, that was a lot."

[00:36:37]>> And it wasn't.

[00:36:38]>> God. Um, and like I remember when Oakley was young, I used to say to Aaron like, "We've took our life for granted." Like we've literally took our life for granted cuz now our life has just gone.

[00:36:52]>> Yeah.

[00:36:53]>> And it wasn't because of Oakley. It was a situation we were in and we were so naive to the medical world. and what other families go through, you don't see it.

[00:37:01]>> Yeah. God, >> you see people talk about autism online.

[00:37:04]That's the main thing. And I think that's a that's a least of Oakley's problems.

[00:37:07]>> What advice would you give any sort of new mother who's been thrown into it into the medical with absolutely no idea that that was going to happen?

[00:37:15]>> I think for me, I said no to psychology for such a long time.

[00:37:20]>> Um, they kept trying to push me and I was like, "No, no." And it was the best thing I did because they can't judge you. Like especially psychology that's involved in the hospital, part of the child's condition, they know everything.

[00:37:33]They've heard it all.

[00:37:34]>> Do you know what I mean from the parents? And that was the best thing for me. But >> as well, like I've still never googled a syndrome. You know, my mom told me when she met Oakley, do not Google Apert syndrome. And I was like, why? She was like, because you I'm not I'm not letting you do it. Just don't do it.

[00:37:50]>> Yeah.

[00:37:51]>> And I still haven't. And I still don't know why she said that to me, but I think because with Oakley's condition, like people are so judgmental of the way people look, aren't they, nowadays, >> beyond with bloody social media.

[00:38:08]>> Yeah. And I think for me, like I was when he was born, I was like, he doesn't actually look that aper. I was so worried about like, well, he doesn't look that aper. And I just think h like why why do I care if he looks aper or doesn't look aper like >> he doesn't actually look that apert for when you look at the spectrum but his breathing issues at the higher end of the spectrum his hands were quite complex like his head was extremely complex and it's like would I take away him looking not that aper and take away all the other things yeah I would >> did you um cuz when you first spoke about his condition online were you were you nervous nervous of what the what people would not what what people would say but what the because of the social media being such a can be such a negative place but also obviously can be incredibly beneficial to help other people who might be going through something similar. Were you nervous about what people might say?

[00:39:01]>> That's why I kept it in for so long. I think >> that was not the main reason but I kept his diagnosis that we had people in the hospital trying to take pictures of him members of staff >> because no one knew what he had but everyone knew. I felt like I was hiding my child. It was horrific. And bearing in mind this is a child that was under I think he's under like 17 when I worked it out I think he's under like 17 like specialist teams in Newcastle. That's without like community team and Liverpool.

[00:39:26]>> Yeah.

[00:39:27]>> So he's under so many different specialist. Name any part of your body.

[00:39:30]I guarantee he's under a specialist for it >> really.

[00:39:33]>> But um so we had people in the hospitals trying to take pictures of him like nurses. me and my my mom was in the hospital with me and I had like not over his head but it was sort of like I was trying to like her not to take a picture but I had it like behind him but him facing me.

[00:39:49]>> Yeah.

[00:39:50]>> Um and my mom screamed at this she was a student nurse but it was still you're training to go and work in this field and you're trying to take a picture of my son clearly to try and send to your stupid mates because you don't know what condition he's got.

[00:40:01]>> Yeah, that's [ __ ] up.

[00:40:02]um and like people in the shop. So I used to keep my hooded pram up like if I went into test bearing in mind I was like a hermit when he was first born I didn't want to see anyone cuz I knew people now even when the boys were born they would go oh I follow you on social media what beautiful baby you've got >> actually the I I understand why people put the kids on social media but then to go up to that child or say I recognize your kids on social media is weird is >> no you have no idea since Oakley it's been 10 times worse. Yeah because because his condition I think people notice him more where my other boys they probably don't really notice him more.

[00:40:31]Maybe Maddox because he's Aaron Spit, but >> like they wouldn't see Romeo maybe or I don't know. I think it's just because Oakley they sort of see his face and actually remember his face.

[00:40:42]>> Yeah.

[00:40:43]>> Um but and I think Yeah. I just remember I remember being petrified of what people thought and that's awful. Um and I don't feel guilty for it now because >> I don't think you should feel guilty cuz it's an unknown thing, isn't it? Like you [ __ ] knows what you would have no idea what people would say or think.

[00:41:00]Well, I just think do you know when Romeo was born, right? Um Romeo like people used to message and be like Romeo's head looks big or this and this is a problem.

[00:41:11]>> Extraordinary that people feel the need to comment on a child like I'm not being funny but that's the level of how [ __ ] up social media is a little bit. People do criticize your children like and you know it's probably my fault cuz I show my kids but if I didn't show my kids or like show the reality of how I'm living with Oak's condition like I've helped so many people you know like with condition because there isn't a lot of people and it's like a little community like >> also you know what it takes one person to go through this to then know that you have and like just to know that it's >> all over the world though you know like I'm getting people from America from like Australia like you name it. There's been countries where they've messaged and found my account because I obviously do the hashtag a syndrome and people need that.

[00:41:52]>> Yeah. But that's amazing that and they need that help. But I just it's so Yeah.

[00:41:56]I don't know. It's It's so fascinating.

[00:41:57]I find it not fascinating but just so mental that people take Instagram for I don't know to use it in a way that's not nice about kids.

[00:42:05]>> You would never get like a like I don't know just a normal person start writing.

[00:42:11]I I just I can't comprehend it to be honest with you. And I've never wanted to write on someone's picture or message someone being like >> No, no. I think you have to live a sad little life if you're someone who does that.

[00:42:21]>> 100%.

[00:42:22]>> And I I think they think that we're not normal people because we've got a following. Big wow.

[00:42:28]>> Like we still have feelings. We still like just cuz we show certain clips on our social media that isn't our full life. You see 15 seconds on a story and you think, "Oh, that's their life." No, it's not.

[00:42:41]It's Yeah. Do you um How with your and Aaron's relationship, what has it got stronger because of Oakley or has it did it really change it?

[00:42:50]>> No. Me and Aaron probably had the best pregnancy when I was pregnant with Oakley. Even though we had that going on once that had gone on and we knew that Oakley was okay, >> like we had the like a lovely pregnancy like went on holiday twice. Um, like we were enjoying the babies being babies because the boys are only 12 months and eight days apart, the two boys.

[00:43:11]>> Close.

[00:43:11]>> Like Romeo and Maddox. So I would literally fell pregnant straight away.

[00:43:15]>> And it was a really nice pregnancy. Like I couldn't wait for the baby to be there to make it even more happier to have that baby bubble.

[00:43:22]>> Yeah.

[00:43:23]>> And when Oakley was born, like Aaron was amazing when like I remember him going home and texting me and being like, "Look, no matter what, like here, make us even stronger. We'll get through this." And blah blah blah.

[00:43:35]And I remember thinking like it was like a weight had been lifted because I was panicking the way he was feeling cuz it was like Oakley was born. He had to leave to go to see to the kids and I was left in the hospital but we had no conversation.

[00:43:46]>> Yeah.

[00:43:47]>> And it was kind of like I don't know how he's feeling. He didn't know how I was feeling.

[00:43:51]>> Both probably in complete shock.

[00:43:53]>> Yeah. Like I it was just the most weirdest experience I've ever had. Yeah.

[00:43:58]>> And then I think when Oakley was about 3 months old, we were obviously having like community nurses in, like dietitians in. My baby was constantly being sick. He was always in the hospital. He was ending up in theater.

[00:44:11]And it was just like a revolving door all the time. It caused and Aaron was one of those people, right, where he wouldn't want someone just turning up to the house. Yeah.

[00:44:20]>> You know, like, oh, should I come in for a coffee? I was just driving past. He would not have that. Like that was a no-go. like we never really had people around for dinner. It was kind of like >> I don't know. He just his like >> his home is like his private space and I think it was because like because he is well known in Newcastle, we couldn't go anywhere really without someone trying to get their phone out sneakily or >> be highly [ __ ] irritating.

[00:44:41]>> Be weird. Yeah. And that was his safe place. So then to have that to then have loads of people in our house.

[00:44:49]>> Yeah.

[00:44:49]>> I mean Jesse, do you not remember when we were filming what he was like? He was like a lunatic, wasn't he? With people in our house like >> And camera crews are a [ __ ] liberty.

[00:44:55]Yeah. Like, and obviously the first >> I had to have my house redone because of them.

[00:44:58]>> The first series we had, I'm not even joking, there was like, >> I'm not even joking, like 15 people in my house.

[00:45:03]>> It actually gives me anxiety thinking about eating their [ __ ] snacks and it's always at the wrong >> Yeah. And we had like this weird flooring that was like marble that if you walked on it, it was showing your footprint. Like it was just so stupid.

[00:45:17]Like this flooring that we had. He's laughing cuz he probably remembers it.

[00:45:20]And I would be walking around like with a mop like, >> no, I'm not joking. like really bad like OCD, everything had to be in certain places and stuff like that. And I'm quite like that anyway. So, we were very house proud.

[00:45:31]>> And I think going from having no one really in our house apart from if we were filming at the time, but obviously I didn't film my pregnancy with Oakley or anything like that. It was before that. then to having all these nurses in and out and hospital appointments and being in hospital in theater, it just took a toll.

[00:45:54]>> Yeah.

[00:45:55]>> And I remember him just saying like, you know, I can't do this anymore. And I was heartbroken cuz I was just like, well, hang on a minute. We've gone through an amazing pregnancy again.

[00:46:08]This isn't, you know, a normal situation we're in.

[00:46:11]>> Yeah. and he just started to he started to to drink and he just couldn't handle it. And >> did he have go have any therapy?

[00:46:21]>> He done a couple of sessions but he couldn't do it >> really.

[00:46:24]>> He didn't stick with it now.

[00:46:26]>> But Aaron's never really been like that like he's done counseling like when we done couples counseling but again that was for the show you know we didn't stick with it. Um, and you know, even now I say to him like, "You should do it." But Aaron bottles it. Aaron bottles things up.

[00:46:45]>> And I think most men do. Like >> Yeah.

[00:46:47]>> And I think he's frightened to say how he actually feels or how he felt in that moment where like you're asking me questions about how I felt when Oakley was born. I'll tell you the truth because he's still my son. I love him to bits. Yeah. I went through shock, but no one would ever understand that unless they've been through it.

[00:47:02]>> Where I think with a man it is very different.

[00:47:06]>> Yeah. He probably feels ashamed that he probably can't say how he felt or, you know, I I do think that's a huge thing, but yeah, it was just it was just too much. He couldn't deal with it.

[00:47:17]>> And how how long after Oakley was born did that happen?

[00:47:20]>> I think he was about 3 months.

[00:47:22]>> Really?

[00:47:22]>> And how old is Oakley now?

[00:47:24]>> He was four in August.

[00:47:26]>> Oh my god.

[00:47:27]>> Yeah.

[00:47:28]>> Um and so what your And then what So did you guys break up? So yeah, he it just got really like awkward in the house.

[00:47:38]>> I can understand because it was like he didn't give me a reason.

[00:47:41]>> Yeah.

[00:47:42]>> For a long time.

[00:47:43]>> Um and I think that's what I struggled with cuz I was blaming myself cuz I was thinking well I've gone from doing everything for someone like I mean everything to then we had this thing where like obviously Aaron was a fighter that brought most of our money in. Yeah, >> I did a little bit of Instagram. That brought money in. We did Jordy Shaw.

[00:48:06]That brought money in. But when we first got together, Aaron was sort of like he was the money maker.

[00:48:11]>> And I was the one that was like at home, the house had to be clean. Like I was a housewife basically.

[00:48:16]>> Yeah.

[00:48:17]>> Um but I enjoyed that. I enjoyed taking care of him. Like I enjoyed like I'm I'm quite a good cook. Like I I love cooking. That's kind of like a little bit of therapy for me. Like I ignore the kids and I think I'm doing my cooking now. See you later. And like I'm I'm getting on with that. And um I've I went from that to then having obviously two babies that are toddlers.

[00:48:39]>> Yeah.

[00:48:39]>> I don't even think Manx was walking when Oakley was born.

[00:48:42]>> Bloody hell.

[00:48:42]>> Romeo had not long really started walking. So there were, you know, very little babies. Yeah. We had three babies in two and a half years to then a child that was screaming all the time. They didn't realize that he was dairyfree for a long time. So he was we were giving him milk >> cuz he couldn't breastfeed.

[00:48:59]>> Um I had to do it through the NG. Giving him milk or 60 ms which is about that much nothing in a tube which is hardly anything >> and he would just spew it up then he would scream >> and it took a long time for them to realize he was dairy he was dairyfree.

[00:49:14]>> When you leave the hospital with Oakley, do they give you like a list of like how do you know what to look out for or what to like you you just just basically have to wing it?

[00:49:22]>> Yeah.

[00:49:23]And he had his nose he had his nose tested, right? Because with Apert syndrome, one of the things that they have to check is their breathing because they've got narrow airways. It's basically like your face being sunken in. Like your airways being sunken in.

[00:49:35]That's the best way to describe it. He had a camera when he was a couple of weeks old in the hospital before I got discharged.

[00:49:41]>> Big long tube that went down to check he's got enough room for him to breathe.

[00:49:45]>> They said it was fine. Then 3 days later, I rushed him in. couldn't breathe cuz he must have grown slightly where and where where he couldn't breathe. So, he had to have those tubes in. But, they told me 12 weeks the tubes would be in.

[00:49:57]He's still got one in now.

[00:49:58]>> Just can't breathe about it.

[00:50:01]>> What's your Do you have much And I know obviously they've been a massive fell along the way. What's your Do you have much faith in the sort of medical department or how do you feel about it because of so many things that have happened along the way that you weren't warned about or told about? I think some consultants are a bit wary when I go in because I am a big mouth. I'm not going to lie. I know I'm sitting here talking to you and I'm like obviously I'm quite emotional what we're talking about. But >> I have learned at first I used to be like right can you tell me what to do?

[00:50:28]Like so what do I look out for? Now I'm like no I'm telling you this is what's happened and this is what needs to happen.

[00:50:34]>> Because I think I've had to become strong and I've had to learn their jargon and they're the way they what they look out for and Oakley's not a textbook child. Yeah.

[00:50:43]>> So, like there might be a neuro consultant that might go, "Yeah, I had it a couple of weeks ago. We got rushed to Liverpool." He had metal work done in his head and it basically he um his head weren't healing properly. So, the surgery was back in May 2024 and it was causing problems I think in February this year. So, it wasn't healing. So, it took all this time to all of a sudden start showing signs.

[00:51:11]>> Yeah. So I went into the went to hospital and I said to the neuro this is a neuro registra his head ain't right there not right there's a big lump under it I'm not happy he's not himself he's not eating there's something wrong he went to me he's got an infection in his brain I went right he hadn't done a blood test he hadn't done a CT scan so I knew that that was not the case he sent me home with antibiotics that could not take for sake so this was on a Friday afternoon >> so I've had to ring my other hospital and say are crying down the phone saying there's something wrong with him. I don't know what he's not right. They've told me he's got an infection in his brain and I'm flapping because the last infection he had in his brain he nearly died. So why is he sending me home? And this that was my psychologist. My psychologist I had to ring. So then she got hold of the neuro department said Talia's worried. What what do you want me to do? They straight away said get her tell her to get up here.

[00:52:03]>> Are you serious?

[00:52:03]>> Friday afternoon. So I literally had to drive from Newcastle to Liverpool get him in get him seen. He ended up in theater. Oh, for [ __ ] sake.

[00:52:10]>> So, the wires that they had, the metal work from two years ago they had were poking out of his skin and causing infection.

[00:52:15]>> Oh, no. Don't.

[00:52:16]>> So, but how I just do they just not take it seriously or what? What's the issue?

[00:52:21]>> I I personally think they see him and he's so complex. Like, I could literally write if I've had a page like that and wrote down every condition that page would be for.

[00:52:28]>> I think they see him and they're like, "Fuck." Like, this child's got a lot.

[00:52:34]Like I've noticed there's been times where it's kind of like a pass the buck situation >> and my respiratory consultant in the RVI Amry Abd I absolutely love her. She is incredible. She is she is not petrified of my child.

[00:52:48]>> Yeah.

[00:52:48]>> She will be like, "No, this needs to happen. This needs to happen. We need to get these people to see him and it's done."

[00:52:53]>> Yeah.

[00:52:54]>> And you know there's certain people in our I've eliminated I think I've had like three or four respiratory consultants cuz I've been like >> you're not putting my son first.

[00:53:03]If I if I don't think that they're taking him seriously and they p me off, I will say, "No, I need to see someone else because I I can't [ __ ] around."

[00:53:14]>> Would you not advise me to another mother? Just trust your gut if you feel like your child is something.

[00:53:18]>> I swear. And I've said this to Aaron so many times. My instinct to say Oakley's life four or five times >> really.

[00:53:26]>> And I don't know how. And I'm not blowing smoke up my ass, right? because I'm the most ficst person you'll probably ever come across. No, you're not.

[00:53:34]>> If you ask me to read a sentence, if you ask me to read a sentence, I can't read them, right?

[00:53:38]>> But I know what I'm talking about when it comes to him cuz I've had to learn.

[00:53:41]I've had no choice to learn. They've like got through me in the deep end and gone, there you go. There's a child with loads of needs. You're going to have to deal with him and I've have no clue.

[00:53:50]Like he's on obviously a lot of machines. I've had to learn everything.

[00:53:54]But even like research, I've had to sit and try and read and I can't read and understand and be like I'm I had a conversation with his gastro consultant a couple of months back. Um this is before he got diagnosed with a sickness condition. Went into hospital. He kept getting in and out of hospital cuz he had this sickness. They kept saying it was reflux. I was going it's not reflux not reflux.

[00:54:14]So anyway he I got transferred to the gastro team and we had a meeting and I said my son's got CVS. And he went well how do you know? So I said well he's had menitis. He's autistic. Again, that can come hand in hand. Um, I said, "The cycles, I know when they're going to happen, as in how long they're going to last." Explained all these details. He went, "He's got CVS."

[00:54:34]>> I have had to do it because otherwise people will literally just write down and go, "Yeah, we'll just see how we go.

[00:54:40]See you in 6 months." I can't have that.

[00:54:41]>> Yeah.

[00:54:42]>> Like I I've got a child that does not speak to me.

[00:54:46]>> Yeah. I mean Yeah. It's It's just Yeah.

[00:54:48]>> And he's so unpredictable. He could be fine one day.

[00:54:51]>> Well, this is what I was going to say.

[00:54:52]Like do you sort of like is it just every day as it comes or can they will they can it is there any sort of like progress report on anything that will suddenly like will he have the sickness disease forever?

[00:55:02]>> Uh that's it's unccurable.

[00:55:04]>> It's unccurable.

[00:55:05]>> Yeah.

[00:55:05]>> Um and when Oakley was born I was naive and thought ap was curable. It's not >> menitis obviously that was curable but he's got repercussions of that. He's got brain damage now. He's got CVS. He's got hydropheilis, which is fluid in the brain. These are all things that aren't cure aren't curable. So, it's like and he he's had 20 surgeries. He's three and a half.

[00:55:29]>> No, it's crazy.

[00:55:30]>> 20. And I I know I shouldn't be counting, but I'm like, "No, you should be proud of it, son." Like, I keep saying that and I said to the kids, I'm like, he needs to this. How can I be negative about I've got to try and turn it around?

[00:55:41]>> Yeah.

[00:55:41]>> Cuz if I say to the kids, oh, the baby's gone down for another surgery again.

[00:55:45]Like obviously this is any any anesthetic anyone has is dangerous, but with a child that can't breathe properly and sleep at the same time is extremely dangerous. And with his shunt, it's extremely dangerous. Like there's so many different things with Apert syndrome that are so complex.

[00:56:00]>> Yeah.

[00:56:00]>> Um it's crazy. But I have to say to the kids like like he's on a list for another two surgeries that are coming up. That's just in the next couple of months.

[00:56:08]>> Oh my god. And it's like you have to turn it into a positive because and make him make the kids look like he's embracing it because how can I say make it how I actually feel. I can't I can't show them that.

[00:56:21]>> Can you show anyone that side of you though? Like do you feel comfortable enough with anyone maybe your therapist that you can like let your guard down a bit with it? I would say my friend Sarah who's the little boy who's got Apex syndrome who's a lot older than Oakley but even now some days I have proper breakdowns you know where I'm like >> what the [ __ ] [ __ ] like I sit there and I'm like what and then some days I'm like like come on we've cracked another day bedtime and breathe they're in bed everyone's fine we've managed today >> but you know Sarah I tell her everything like I'm not embarrassed to say how I feel or >> or nothing. And she's like, Talia, I've been there. Like, I know. But she says to me all the time, I'm worried about you that there's going to be a time where you're going to burn and crash cuz Sarah did hit a certain stage when Kai was young where it hit her.

[00:57:11]>> It hasn't hit me yet. And my psychologist says to me, it's because Oakley's not give you a chance to have even a couple of months where there's no hospital trips, no operations, no drama, no life-threatening things going on.

[00:57:25]Yeah, >> you've not had that yet. And she said when that does happen, that's when I'm going to be worried about you.

[00:57:32]>> It's a lot, isn't it?

[00:57:33]>> So, I think that's why they're trying to get this EMDR in for me as well because >> hopefully it will try and take away some of the things that have happened.

[00:57:41]>> But then, like I say to my psychologist, but then he's going to do it to me again.

[00:57:46]>> Oh my god.

[00:57:47]>> Do you know what I mean?

[00:57:47]>> Yeah. No, I do. I like Yeah. I mean, you're incredibly brave, just so you know that. I I do think it's a shame though that like I know I show my life online, right? And there are I could probably name two or three people that have got big followings that show the reality of having a child with additional needs. And there's there's not a lot.

[00:58:10]>> Do you But yeah, I think do but do you it's a >> and it's therapy for me, you know, you know, you know, when people say to me, why do you show your life online like that?

[00:58:20]Like do you do it for symphfy? And I'm like, no, but it's therapy for me that I'm getting it out there and then people are going, do you know what? I've been through that and I felt like >> and helping I think the help that you'll be doing for I just think of other mothers who probably are in a similar position and going oh my god what the [ __ ] >> and just don't know what the [ __ ] to do.

[00:58:34]>> They do.

[00:58:35]>> I know. I think it would so massively help. Yeah. I think I don't know. It's a probably I'm trying to think who I can think of not who think but why certain people would want to be more protective.

[00:58:45]I would imagine sadly a lot of people you know who you were saying in the beginning would be nervous of what people would say.

[00:58:51]>> Oh I was that was so like you asked me that question. I still probably haven't answered it, but like why didn't I sort of like show like you know why did it take me so long. Mine was that one I was afraid of the public's >> opinion >> which is toxic really for me to even think that but it's it's true because you know you've been on TV what >> or even Yeah. So like >> I was was scared >> cuz I thought I'm not in the right frame of mind. I'm going to I'm going to end up killing some on me because I'm going to say you say something about my kid and I'm going to explode.

[00:59:23]>> I don't blame you though. I'd have gone [ __ ] hard at them.

[00:59:25]>> Do you know what I mean? So like I didn't want to put myself in a v I'm in a vulnerable position as it is at this point.

[00:59:31]>> Am I going to do that yet? No.

[00:59:32]>> Yeah.

[00:59:33]>> Then my other thing was I haven't dealt with this. Like >> they're people are going to ask me questions like how did this happen? Like was this a birth trauma? Like >> why did this happen? And I don't know the answers and I didn't want to know the answers at this point. I was literally trying to survive each day before I thought, how can I even come out with this?

[00:59:53]>> Did you dug yourself hole?

[00:59:55]>> Yeah. No, I was going to ask, could you suddenly look back at your pregnancy and think of any small thing that you may have done that could have done something?

[01:00:01]>> That went through my head like you wouldn't believe and tell proper sat me down and said, "Talia, you have not done nothing. Aaron has not done nothing."

[01:00:10]>> Children are born with conditions and the parents are so fit and healthy. Like I trained through my pregnancies and that, you know, like I love the gym. We ate so healthy. Like me and Aaron, >> me and Aaron struggled to fall pregnant with Romeo. Like we had miscarriages and stuff which I've not actually spoke about before.

[01:00:25]>> Like we were so like healthy. Like we had healthy lifestyles. Like I wasn't a drinker. Like I never ever have been really like the odd occasion, but even then like alcohol makes me feel like I'm going to throw up. So like I just think I can't be asked. I like getting dressed up and having my pitch done, but I don't like drinking.

[01:00:42]>> Yeah. Um, >> so never leave the house.

[01:00:45]>> Yeah. So like for me I I blamed myself a lot, you know, cuz I used to think what have I done? And then I started going down the whole life was too perfect.

[01:00:55]That was why.

[01:00:56]>> No, you can't think like that.

[01:00:57]>> And then it wasn't until obviously I've had psychology and I've spoke to specialists that I'm like anyone can just have a child that have additional needs and it's not no one's fault.

[01:01:06]>> And what and now I'm like >> even if it was someone's fault, like I love him to [ __ ] bits. like he's my child.

[01:01:13]>> Do you know what I mean? But I think that was what I was worried about was people thinking like cuz obviously children do have conditions that are from birth traumas.

[01:01:21]>> Um and you know there's quite a lot of conditions that do that and I was worried that people might have thought that and know the answers. Yeah.

[01:01:30]>> Yeah. People did think um that I had a bad birth and that was why my birth was 2 hours and he was out like not a problem. It was he was obviously growing.

[01:01:41]>> Yeah.

[01:01:41]>> That he had that from from day one.

[01:01:44]>> Um but yeah, that was um I dug myself in such a hole that I was like >> dr murdering.

[01:01:53]>> What do I do now? Like cuz I was trying to do things with like well Oakley was in hospital for like I said for 7 months but I was trying to like even people coming onto the ward. There was families on the ward that were looking and noticing and you know like I was fright we were in a room. I had to be put in a room cuz I was like people are trying to get pictures of my child. They're in there with their sick children. Like their children that are really unwell.

[01:02:15]My child's not well >> and I'm having people trying to take pictures of him and I haven't come out of his diagnosis cuz I was scared that someone was going to take a picture of him, send it into the press. I'm sorry that actually should have has to be illegal. That can't be right. That would be illegal. I think until you've shown your child, >> you can't show >> they can't. But I was But then I didn't want pictures going around or like people having like these mad >> like >> it's I'll be honest, it's what you were going through to then actually that be another concern is someone trying to release a photo of your own baby. Do you know what I mean?

[01:02:44]>> I was hiding my life. Yeah. And people knew that Oakley kept having surgeries and people knew that I was basically living in a hospital. Like I had the kids at home, me and Aaron had separated. I had Oakley in hospital. I was trying to balance all of this >> and it was it was so hard. Like I'm I look back now and I think I don't know how I survived that. I generally I think it was my psychologist said it was like fright or flight or something. It's called >> flight. Fright or thorn.

[01:03:14]>> Yeah. And it's like >> there's two more other ones that we should remember but I can't think what the [ __ ] they were.

[01:03:18]>> And she was like you were living in this constant.

[01:03:21]>> Yeah.

[01:03:21]>> And even now like like she said you've not had a chance to have like a >> Yeah. I hope that happens soon though that you could as you can just take a breath with it all.

[01:03:33]>> Well I decided I didn't want any surgeries this year but then he's ended up with another two so far. He's got his another one because of the sickness.

[01:03:39]He's got to have um something else done and then he's got to have cuz one hand's had surgeries on. So he's actually got five fingers on one hand now, >> right?

[01:03:47]>> Where some Apex kids don't get five.

[01:03:49]Some might get three.

[01:03:50]>> He's managed to get five but he'll never be able to bend his hands like us, his hands will be permanently straight. He hasn't got knuckles.

[01:03:56]>> Is he in pain?

[01:03:57]>> I don't know. I said that's another thing that I was always worried that >> having child with additional needs. And then I used to say to Sarah all the time, I know he's autistic. I know he's autistic and cuz it used to be him rubbing in his cot constantly >> and at one point I actually thought he was blind because he would never look at me. He was look he was looking like past me >> and it wasn't it was the autism >> because obviously he wasn't talking so it's not as if he could say mom I can see you or look here you know like doing that I would do that >> and he would look past me but not at me.

[01:04:32]Um and I remember get I mean he's under opthromology anyway but because that's another thing that can their brain can affect their eyesight at any point right >> so I remember saying to the opthromology he can't see me and they would go no I think he can see you said no he can't and then when I got the autism diagnosis it was like a weight had been lifted >> how old was he sorry when he got the autism >> two he was two >> and I hate saying that online cuz the amount of people that have been like my child's been on the waiting list for blah blah blah years but when you've got a child slightly different yeah like when they're under so many specialists, you do get seen quicker with that because these people are involved already.

[01:05:07]>> Yeah.

[01:05:07]>> So, I had a speech and language therapist involved. I had a pediatric consultant involved. I had all these people, occupational therapists. I had all of these people as well as all the others go, >> "Yeah, he's autistic." So, like we got the diagnosis in like once we've got the ball rolling, I think it was like 3 weeks, >> right?

[01:05:22]>> Which is obviously unheard, really unheard of. But it's because he's severely autistic, the signs are there.

[01:05:29]Do you know what I mean? It's harder for like a child that can talk and is masking things. Yeah. You are going to be on a waiting list for a long time because you haven't got all these other people involved already that are seeing the signs too.

[01:05:39]>> Yeah.

[01:05:40]>> Just to get a speech and language therapists, I think you're waiting years some in some trusts. Yeah.

[01:05:45]>> Do you ever um because of social media just just another question. Do you ever get other people who like medical people commenting on things that you post with their what they think?

[01:05:54]>> Yeah. All the time. Really?

[01:05:55]>> Yeah. which is nice actually cuz they're like I think some people look at my life and think >> is this actually real. Do you know if if if someone actually filmed my life now?

[01:06:04]>> Yeah.

[01:06:05]>> I think people would actually be gobsmacked at my life.

[01:06:08]>> What you have to go through every day?

[01:06:09]>> Yeah. I think they would actually be gobsmacked at situations that Oakley gets put in, that I get put in, that the family get put in. I think they would be gobsmacked because >> I post online but then actually living it is completely different or seeing it with your own eyes. So when people do comment that our specialists, they are like, "Yeah, you know, we've I've seen this all over." Or people DM more like DM me because I feel like they don't want to be seen that they're doing it and they work for the NHS.

[01:06:33]>> And is it generally helpful stuff or is it is helpful stuff?

[01:06:36]>> So like a couple of weeks back something silly like um one of Oakley's medications are like really hard to get hold of. I think it might be because of the whole war thing.

[01:06:45]>> Yeah.

[01:06:45]>> Um and I put it up saying, "Does anyone have any problems with trying to find Don Peridone?" And I had loads of people saying, "Yes, yes, yes. And I need this medication cuz otherwise he'll start vomiting again."

[01:06:56]>> Yeah.

[01:06:56]>> And um and there was a specialist that messaged me and she was like, "Oh, I'm a nurse at blah blah blah hospital. We've had trouble. Um try this medication.

[01:07:08]It's similar with this dose." So I went to my GP and said this and straight away they sorted it. So it's like it's it is really helpful.

[01:07:15]>> Yeah, that is that is quite that is good that you actually like Yeah. I can reach that many people like that.

[01:07:21]>> And I think a lot of um people that do follow me are in the medical world or have a child like jobwise or have a child that have additional needs because when me and Aaron >> when I when my last series of Jordy Shaw I had about 200,000 followers, you know.

[01:07:38]>> Okay.

[01:07:38]>> So they've pretty much doubled.

[01:07:40]>> Yeah. Like since I've been talking about Oak's condition, since I've shown obviously having the three little ends like they do in obviously Sienna, like I think because there's there's not many people that talk about it.

[01:07:50]>> Yeah.

[01:07:50]>> And there's not many people that have >> Can I ask you something? Do you ever get time for just you? Like do you ever have a moment in the day where you're like, "Okay, I can have half an hour to myself."

[01:07:57]>> I'm not going to lie. This is the first time I've done something like this in a very, very long time.

[01:08:02]>> Really?

[01:08:02]>> Yeah. Because even for Oakley, like it's very difficult for me to have someone to have Oakley. Very difficult.

[01:08:10]>> Um because I've got to be very experienced and trained. Um >> and like you know at home I go to the gym. That's my that's my thing. So in the I make sure I go to my my PT three times a week and then I go David Lloyd twice as well. But like as soon as I get up, I drop the kids. Gym, go home, do everything I need to do for Oakley, work, do dinner, go and pick the kids up, dinner, bath, bed. Like, it's literally like >> it's insane. Yeah. The holidays throw me off. I' I've just been diagnosed with ADHD a couple of months ago as well.

[01:08:42]>> Oh my god.

[01:08:43]>> So, that's made me understand myself a lot more and how I am with routines and why it triggers me when >> the time isn't right.

[01:08:51]>> Yeah. Um, and I think it's made me understand a lot about my parenting as well.

[01:08:58]>> Yeah.

[01:08:59]>> With like how I am strict with the kids with certain things.

[01:09:04]>> My mom and dad like they laugh and their mom and dad aren't together, but they both laugh and like say I'm like sergeant major because like but I have to think you have to be with that many kids. I think you have to be I'm one of five.

[01:09:14]>> I don't know how you do it. Like that is it's [ __ ] mental by the way by yourself. Are you like not proud of yourself, but do you feel like you've what you have achieved because of what you've gone through is pretty [ __ ] mental.

[01:09:26]>> I'll be honest, I feel like people ask me a lot like with in regards to like me, you know, me and me and Aaron having a breakup. I never saw my life without Aaron. Like I never wanted to have kids >> and not be with Aaron.

[01:09:42]>> So for me, it took me a long time to be like, I can stand on my own two feet.

[01:09:47]Yeah.

[01:09:48]>> Like it really took me a long time because my confidence were just gone.

[01:09:51]>> Like I literally had baby after baby after baby and then it was kind of like >> has he fallen out of love with me? Is that why? Is it because I I didn't know the reasons why for a very very long time.

[01:10:02]>> Yeah.

[01:10:03]>> And it took me a long time to be like I can stand on my two feet. I can like you know work and stay at home and do these medical things. I would never be able to go and work a 95 with Oakley. Yeah.

[01:10:18]>> And that's one thing I've noticed with >> children, parents with children with additional needs. You could never work a 9L5 cuz I have appointments every week.

[01:10:28]>> Yeah.

[01:10:28]>> Every week. So, I'm lucky I can work like I can but still have to be there for him as well as be there for the three others. But I think for me it's always been it's took a long time for me to stand on my own two feet and be like, "No, I can." No, >> but I think me and Aaron have been in really horrific situations as a relationship as well as a co-aring relationship. And then I feel like the last couple of months it's been so much better. Like we have been trying to work things out for like me and the kids and him and it's been better than it ever has been.

[01:11:00]>> That was good.

[01:11:00]>> But I feel like it's took a long time for me to get past that point of actually I can do it on my own and that's fine. Yeah.

[01:11:10]>> And with him as well, I think he's learned a lot about himself as well. But don't get me wrong, like co-arenting and relationships and when you've got kids involved, it's just >> a whole different ball game.

[01:11:21]>> It is.

[01:11:22]>> God, where what's your Instagram in case anyone wants to follow you or wants to ask you? Do you mind people DMing you if they want to ask question?

[01:11:29]>> I try and answer as much as I can, you know, on Instagram.

[01:11:32]>> Okay.

[01:11:32]>> Um when it come when it's silly questions, I don't bother.

[01:11:35]>> If anyone's going to ask you silly questions, [ __ ] off. And no dickpicks.

[01:11:39]No. Unsolicited dick pics is unnecessary.

[01:11:43]>> I get because I sell lube. I'm not joking. People think it's acceptable to ask me bizarre sexual questions.

[01:11:48]>> I'm not a sex therapist or a guru in that world at all and people have sent me them recently. I'll have to send put them on the group. I'll have to shame them on the on my stories. Um, >> you should do that for weirdos.

[01:11:58]>> Um, what is your Instagram again? Just Talio Talio.

[01:12:02]>> Yeah, I think it might be Talia. I'm not sure.

[01:12:04]>> Okay. But yeah, I do I do especially like when it comes to people looking for advice with being a medical parent, I always try and respond, you know, um because I'm still learning.

[01:12:15]>> Yeah, >> I'm 3 and a half years in and I'm still learning.

[01:12:18]>> Can I just say I think you are [ __ ] remarkable and incredibly brave. Um thank you so much for that.

[01:12:24]>> Thanks. Thank you.