JESY NELSON - PART 1: Becoming a Mum & The Fight No Baby Should Face

Summary

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Great Company with Jamie Laing

Episode: JESY NELSON - PART 1: Becoming a Mum & The Fight No Baby Should Face

Date: February 4, 2026
Guest: Jesy Nelson
Host: Jamie Laing

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Episode Overview

In this powerfully moving episode, Jamie Laing welcomes singer Jesy Nelson to discuss her journey into motherhood, her twins' rare diagnosis of Spinal Muscular Atrophy (SMA), and the resilience required to fight for her children's health. Jesy shares the emotional rollercoaster of receiving a life-altering diagnosis, the struggles and strengths of navigating the NICU, and her drive to spread awareness so no baby should face what her daughters have. The conversation delves into subjects of maternal love, personal growth, harsh realities of the medical system, and transformative perspective shifts. This episode is raw, sincere, and deeply inspiring.

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Key Discussion Points & Insights

1. Jesy's Transition to Motherhood

• Jesy describes her transformation since becoming a mum, candidly sharing her emotional ups and downs:
  • “I have good and bad days. I won't sit here and be like, oh, I'm fucking amazing… I feel like when you become a mum, you almost have to come, like, superhuman because you're just irrelevant. Like, I don't really matter anymore. Like, they are like my whole heart and soul…” (07:03)
• She describes how previously trivial worries now seem insignificant in the face of her daughters’ needs.
• Jesy admits she never wanted children and had no maternal instincts prior to her pregnancy, making her journey all the more unexpected:
  • “I was not maternal at all. There was not one maternal bone in my body.” (11:13)
  • The pregnancy was unplanned, and her initial emotional reaction was overwhelming yet ultimately affirming. (11:50)

2. Loss of Purpose and the Arrival of Her Daughters

• Jesy describes feeling lost and purposeless before her pregnancy, despite career success in Little Mix:
  • “For a very long time I felt very lost. Just honestly felt like I had no sense of purpose… I still felt like that even when I was in Little Mix.” (13:20)
• Her twins, Ocean Jade and Story Monroe, brought a sense of identity and meaning:
  • “I feel like my girls came along and they just made me the person I've always wanted to be.” (13:37)

3. The Diagnosis: Spinal Muscular Atrophy (SMA)

• Jesy courageously details her daughters’ diagnosis:
  • “Spinal muscular atrophy is a muscular wasting disease… If you don't get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.” (14:47)
• She explains the severity of the condition and the urgent need for early treatment.
• Jesy highlights the additional complication of TTTS (Twin-to-Twin Transfusion Syndrome), emphasizing her babies’ fight for life even before birth. (15:17–16:20)
• Diagnosis was a protracted, traumatic process, with repeated hospital visits and delays that left Jesy feeling powerless and desperate for action. (32:19)

4. Motherhood in Crisis: NICU and Hospital Trauma

• The pain of separation from her premature twins is described in raw detail:
  • "It's so unnatural as a mother to not have your baby on you… You just see them with all these tubes and these masks… all you want to do is pick them up and cuddle them, and you can't." (20:07)
• She expresses profound anguish at being unable to perform basic acts of motherhood, like feeding her babies, especially when nurses or even close family took on those roles:
  • “Every time I would come in, having to see another woman hold and look after my baby was just, like, heartbreaking for me because I was like, they don't even know I'm their mum.” (21:54)

5. Diagnosis Journey: Recognizing the Signs

• Jesy discusses being warned not to compare her premature babies to full-term babies, which delayed recognizing SMA signs.
• She describes in detail the progression from vague concerns (frog-leg position, bell-shaped bellies) to acute alarm (total lack of leg movement):
  • “I noticed all the signs but didn’t know what they were. I just thought it was because they were premature.” (25:02)
• A pivotal moment came when she googled “hypertonia” and immediately feared for her children’s lives:
  • “The first thing that comes up… is SMA type 1. And it says, if you do not get treatment, your baby will not make it past the age of two.” (30:37)
• Multiple doctors’ visits ultimately led to the devastating confirmation of SMA Type 1. (34:25–39:36)

6. Treatment and Hope

• Jesy expresses gratitude that her daughters received treatment in time and remarks on the transformational impact of advances in medicine:
  • “This treatment is literally life changing… I've seen so many families that didn't get treatment.” (46:02)
• The situation remains precarious, but Jesy focuses on each day, celebrating small victories and her daughters’ resilience:
  • “But the thing is with SMA is everything’s so uncertain, and that's the part that can really drive you crazy… you have to take each day as it comes.” (40:39)

7. Raising Awareness and Frustration with the System

• Jesy is passionate about using her platform to campaign for newborn screening (the “heel prick test”) for SMA in England:
  • “There's like 45 countries where they do test for it and this is one of the countries that don't. It's literally the difference of either your child will be in a wheelchair or your child will walk if you get the treatment early enough.” (45:18; 46:02)
• She expresses anger and heartbreak that change requires celebrity attention:
  • “It fucks me off that it took for me with a platform for it to be taken seriously… That shouldn't be the case but you know, it is what it is and you just gotta do what I can.” (48:00)

8. Perspective Changes and Self-Acceptance

• Jesy reflects on how her new reality has fundamentally altered her outlook:
  • “Oh my God, everything else just feels so insignificant.” (49:55)
  • “I’ve always been so conscious of… what I look like and my way and I honestly couldn't give two anymore. I could not give two shits because it's just so insignificant to my life right now and it just puts everything into perspective.” (50:45)

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Notable Quotes & Memorable Moments

• "When you become a mum, you almost have to become like a superhuman… they are like my whole heart and soul." – Jesy Nelson (00:02; 07:03)
• "You could not write it, then what was about to happen." – Jesy Nelson (00:05; 09:49)
• "Spinal muscular atrophy... if you don't get them treatment in time, eventually the muscles will all just die… and they will die before the age of two." – Jesy Nelson (14:47)
• “It's so unnatural as a mother to not have your baby on you… it's horrendous.” – Jesy Nelson (20:07)
• "It’s literally the case of either your child will be in a wheelchair or your child will walk if you get the treatment early enough.” – Jesy Nelson (46:02)
• “That is one of the reasons why I wanted to do [the documentary]... now it's going to spread even more awareness.” – Jesy Nelson (09:51)
• “All these babies that are going to suffer and all these families… they don’t have to.” – Jamie Laing, discussing newborn screening (45:44)
• “I feel like my girls came along and they just made me the person I've always wanted to be.” – Jesy Nelson (13:37)
• “Everything else just feels so insignificant… the shit I used to worry about… pathetic.” – Jesy Nelson (49:56)

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Timestamps for Key Segments

| Time | Segment/Topic | |-------------|---------------------------------------------------------------------| | 07:03 | Jesy candidly discusses the emotional toll and superhuman strength of motherhood | | 09:49 | Allowing documentary cameras in; the unforeseen gravity of what followed | | 14:47 | Explanation of SMA diagnosis, its fatal threat, and urgent treatment need | | 20:07 | Jesy describes the trauma of being separated from her babies in the NICU | | 25:02 | Recognizing symptoms, the "no comparing" warning, and early missed signs | | 30:37 | Googling "hypertonia"—realization and terror at online findings | | 34:25 | Receiving the likely diagnosis from the private pediatrician | | 39:40 | The girls’ resilience, why Jesy feels blessed they are twins | | 45:18 | The fight to include SMA in the national newborn “heel prick test” | | 46:02 | The urgency of early diagnosis and how treatment can mean walking vs. wheelchair | | 48:00 | Jesy’s anger at how change requires high-profile advocacy | | 49:56 | How motherhood and crisis have fundamentally changed Jesy’s outlook |

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Final Thoughts

This episode is a testament to Jesy Nelson's strength, honesty, and advocacy. Listeners witness not only her pain and challenges as a mother facing unimaginable odds but also her transformation into a fierce advocate for her children and others affected by SMA. Jamie’s compassionate hosting allows Jesy’s story to unfold with rawness and hope, making it essential listening for anyone interested in resilience, the realities of rare diseases, and the profound shifts that come with parenthood.

Don’t miss Part 2 for the continuation of Jesy’s journey and more insights into her fight for her children and SMA awareness.

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Transcript

[Ad Announcer]

Coming up in this episode of Great Company.

[Jesse Nelson]

When you become a mum, you almost have to become like a superhuman. They are like my whole heart and soul. You could not write it then what was about to happen. The feeling I got when I walked into the room was like someone had died. There'll probably be a day maybe when the girls turn to me and they say, like, mummy, I don't think I can do that. I'll play them a documentary and I would say, yes, you fucking kangas, look what you did.

[Jamie Laing]

Yeah.

[Jesse Nelson]

Hi, I'm Jesse Nelson and I'm in Great Company.

[Jamie Laing]

Please welcome Jesse Nelson. Do you look back at that time and just go, that was.

[Jesse Nelson]

Oh, God. Yeah, I had my really shit times in Little Mix, but I also had some of the best times of my life. We were best mates.

[Jamie Laing]

When you decided to leave, that must been hard, right?

[Jesse Nelson]

Yeah, it was really tough. From the minute I got off X Factor, I felt like I didn't want to be in it. The way it was making me feel was just like I couldn't, I could not handle it. I couldn't deal with it. And my brother was like, just make as much money as you can and then leave. Best advice now I've been presented with this situation with my girls. I can now, you know, go above and beyond in terms of just the things that they're going to need.

[Jamie Laing]

How are the girls now?

[Jesse Nelson]

They have just overcome so much and they are so tiny and I'm like, there's nothing you won't be able to do. This treatment is literally life changing. There's been so many families that didn't get treatment.

[Jamie Laing]

That's why you speaking out is going to help so many people.

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[Jamie Laing]

My name is Jamie Laing and this is Great Company. Hey, guys. Welcome back to another episode of Great Company. Now, my guest today is the amazing Jesse Nelson. Jesse was part of one of the biggest girl bands of all time, Little Mix. I'm a huge fan. I absolutely love Little Mix in every single way. And more recently, she's become a mum to twins Ocean Jade and Story Monroe. But I don't know if you saw her Instagram post or saw the news that Story and Ocean have been diagnosed with something called spinal muscular atrophy, sma, A rare condition that causes muscles to kind of weaken and waste away. And when I heard this, I reached out to Jesse to invite her onto Great Company to share her story and raise awareness about sma. I mean, this conversation is incredibly powerful and I'm so grateful to you, Jesse, for trusting us with it. We covered so much that we've decided to split it into two parts. So part one is today. This is what you're listening to. And part two is coming out on Friday, so keep an eye out for that. Before we get into it, I'm just going to ask you to do one quick thing for me, if that's possible. Please just follow and subscribe to Great Company. It's totally free and we want to keep it that way. Okay. And it really helps us keep bringing the guests you love and making the show bigger and better for you every single week. If you can do that one thing. Thank you so much. Okay, here's part one with the incredible Jesse Nelson.

[Jesse Nelson]

Hi, I'm Jesse Nelson and I'm in great company.

[Jamie Laing]

Hi, Jessie.

[Jesse Nelson]

Hi. Hi. Thank you for having me, man.

[Jamie Laing]

You kidding me?

[Jesse Nelson]

Can I just say this is a bit fangirly, but I actually am a fan. I don't think you understand. I've, like, watched Made in Chelsea from, like, day one.

[Jamie Laing]

I'm a huge fan of yours.

[Jesse Nelson]

Oh, thank you.

[Jamie Laing]

Yeah, but honestly, Jesse, everything you're about, everything that you're doing. Thank you. Can I. How are you feeling at the moment?

[Jesse Nelson]

I have good and bad days. I'll be honest. I won't sit here and be like, oh, I'm fucking amazing because. Am I allowed to swear?

[Jamie Laing]

You can f k. Sorry. Shit. Anything you want.

[Jesse Nelson]

I've got the biggest potty mouth, so. Great.

[Jamie Laing]

Go for it.

[Jesse Nelson]

Yeah, I have good days and bad days. I feel like since getting their diagnosis, you know, it's just been like that sometimes I wake up and I'm like. Feel almost as. Like, I don't even know that they have it. And then other days I just want to lay in bed and cry, but I can't because, you know, I have to be there for them and I have to. Like, I was saying it to the guys before. Like, I feel like when you become a mum, you almost have to come, like, superhuman because you're just irrelevant. Like, that sounds. I'm probably gonna get absolutely like, no, but you are for saying that. But I feel like, yeah, when you become a mum like, you, You. I feel like I don't really matter anymore. Like, they are like, my whole heart and soul and, like, I have to just get on with it. Whereas before, things that seem now seem so just ridiculous to me that I used to worry about, yeah, I'd sit in bed and I'd cry and I'd feel sorry for myself and I'd have days where I just wouldn't even get out of bed. And now, like, I don't. I don't have a choice to do that because I have to just get on with it. And I do. I just think women are amazing because we just. We just crack on.

[Jamie Laing]

Can I say, I said this to you off mic, Women are amazing.

[Jesse Nelson]

We are. We actually are. And I didn't realize how amazing we are until I became a mum.

[Jamie Laing]

Can I also say, so last night I sat with Sophie and we watched first two episodes of your documentary, which is coming out, which is just. It's moving, it's real.

[Jesse Nelson]

Thank you.

[Jamie Laing]

It's authentic. It's. It's kind of everything. And with so much stuff out there, this is something that's really gonna cut through for so many people. Oh, man. How are you feeling about it?

[Jesse Nelson]

It's mad, right? Because when I first got pregnant, I've been offered to do this, like, quite a lot of times, to have cameras be let in and just film me. And I've always been like, no, not for me, I don't. I wanna keep my life private. And then, you know, I'm not a massive fan of reality tv. And whenever I watch just. Yeah, any. Anyone's shows, I'm always like, how lovely to, like, when you're older, to have their memories to watch back. So when I got pregnant, I was like, you know what? I feel like now's the time. Because how lovely I can. When the girls are older, I can sit and they can see all of this back. And that is one of the reasons why I wanted to do it, and then I was just like, you could not write it then what was about to happen and what then played out. And I just think it's. I also believe that that's the reason why the cameras were letting in my life at that point.

[Jamie Laing]

What do you mean by that?

[Jesse Nelson]

Because now this. This has happened and they've got their diagnosis and all the stuff that I went through, and it's like. And I want to raise as much awareness about it as possible. And it's like, yeah, now the cameras are there in the time that I went through that. And so now I'm like, so grateful that they were there because hopefully now it's gonna spread even more awareness once this comes out.

[Jamie Laing]

I wanna get. You know, I really wanna get onto the diagnosis and what you are dealing with, with your babies. And just, firstly, just for me, I'm just like, sorry that you're having to deal with things and lots going on during such a magical time.

[Jesse Nelson]

Thank you. It's shit. It's really fucking shit.

[Jamie Laing]

It is shit.

[Jesse Nelson]

But at the same time, I'm just still so blessed because my girls are. They are literally superhuman. Honestly, like, I look at them and every day they are happy. And I'm like, Like, what have I created? Like, they are just. Honestly, I just. They. They just astound me every day. Like, the shit that they've had to go through. And they're still happy and smiling and I'm like, that almost thing gives me even more, like, strength to be like, well, what gives me the reason to be sad? It's just mad, Jamie, because I never wanted children.

[Jamie Laing]

Did you not?

[Jesse Nelson]

Oh, my God. Like, I was like. Like, anytime I met anyone and they'd be like, also, I want kids, I'll be like, for fuck's sake, here we go. Because I just did not. I was not maternal at all. There was not one maternal bone in my body. Even I was in little mix. The girls are like, you don't want children? I was like, no, I don't. Like, they're just like, I love my nephews. But even when I had my nephews, I was like, okay, like now, like, go back to your mum. Like, oh. Like, I just. It just wasn't there for me. And then when I fell pregnant, which wasn't on purpose, this feeling that I got was just very strange and abnormal because I was like, why am I happy? And it really freaked me out.

[Jamie Laing]

Try and describe it to me. What was it like?

[Jesse Nelson]

Well, I just. It was like butterflies, but, like excitement. But then Also like fit like fear and worry and I was like. And I couldn't understand it. I couldn't understand why I was feeling these when I have never wanted children. And then you know, me and their dad was like, what we going to do? Like, because he, he always just wanted to be a young dad. I knew he always wanted children and that was always a bit of a like in our relationship because we were like at some point this is going to get really fucking awkward because what we're going to do because I don't want children and you do. So like this is so awkward. And you know, we'd been together like two years at this point. So.

[Ad Announcer]

Yeah.

[Jesse Nelson]

So when I fell pregnant I was like, I was so overwhelmed by all these feelings but I was like this, this, there's a reason that I feel this way. And I just remember getting on the phone to my sister in law and she was the only person I told at the time and she was like, Jesse, I think this is meant to happen to you.

[Jamie Laing]

Yeah.

[Jesse Nelson]

She was like, I think you're being incredible, mum. And she was like, and it's okay to feel scared because when I fell pregnant with George, I was in myself. And she was like, it's, that's totally normal. She was like, but I really don't think you can ignore these feelings. And I knew that I couldn't. And then just mental. I never wanted children. And then the universe gave me twins.

[Jamie Laing]

You know in your. Yeah.

[Jesse Nelson]

Which is like you couldn't write it.

[Jamie Laing]

In your documentary you say before I got pregnant I felt lost. I didn't have a purpose.

[Jesse Nelson]

No. Honestly like only like my real like close friends and team know that like for a very long time I felt very lost. Like just honestly felt like had no sense of purpose. I was constantly trying to find like the next project that would make me.

[Jamie Laing]

Feel worthy, feel something right. Yeah.

[Jesse Nelson]

Yeah. Because I, I still felt like that even when I was in little mix. Like I, I loved performing and I loved. But I still felt like that wasn't like what I was truly meant to be doing. I can't, it was like there was something missing. And that's why when I made like my documentary when I was in little mix that gave me like a sense of purpose. And then when I left I was like searching for that and I just didn't know what it was. And then I feel like my girls came along and they just made me the person I've always wanted to be.

[Jamie Laing]

You put a post on Instagram very bravely talking about your Baby's diagnosis. And I think me and the whole world hearts just broke for you because it was you being vulnerable and open and honest. And I sent you a message just saying, I hope you're okay. And what was so amazing is you sent me back to saying, I just want to spread awareness about this. Can you tell everyone who doesn't know the diagnosis what's happened with your babies?

[Jesse Nelson]

So spinal muscular atrophy is a muscular wasting disease. And what it does is, well, they don't have a gene that we all have in our body. So because of that, their now muscles are deteriorating and wasting away. And if you don't get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two. Yeah.

[Jamie Laing]

Oh, man, I'm so sorry.

[Jesse Nelson]

That's okay. It's. Well, it's not okay, but it is what it is and I just have to accept it and now just try and make the best out of this situation. And my girls are honestly, I mean, I've said it so much, they are the strongest, most resilient babies. And I really believe that they are going to defy all the odds. I really believe that because they already have. It's mad. They were in my belly, they had ttts, which is. It's. It's affects a rare percentage of identical twins. And that means if you. It's when there's only one placenta that both the babies feed off of. And it's crap for both of them because one will get more of the nutrients and one won't. But either way, it doesn't matter. Even the baby that's getting too many nutrients, it still affects them. It's not good. And so if you don't get treatment for that, they. They will die. It's like 95%. Yeah.

[Jamie Laing]

This is what's in the documentary. There's 95% of this.

[Jesse Nelson]

Yeah. That they won't survive. And it's just mad to me that, like, when it's like I watch it so differently now, like when I've watched it back, I like see everything through a completely different lens because I'm like, they had that, but they also had sma and then they just went on to like, fight it all.

[Jamie Laing]

When you find out the diagnosis, you said what happened? How do you discover that? What are the symptoms? What are the signs?

[Jesse Nelson]

So we'd been in the NICU neonatal ward for a month with them because they were obviously born early because of the situation I had with ttts. So they came early.

[Jamie Laing]

Can I ask how early or no?

[Jesse Nelson]

So they were. Yeah, yeah. They were 31 weeks. And they were tiny. They were so, so small. It's so mad because I remember seeing, like, full term babies around the time that I had them. And full term babies look like toddlers to me. Yeah, that's how tiny they were. And I just remember thinking, I can't ever imagine them being that big.

[Jamie Laing]

What, the size of your eye?

[Jesse Nelson]

Oh, yeah. Yeah, Literally. And that was so tough. That was so hard because I had my C section and before I went in for that, they said to me, because I'd been living in hospital for nearly three months because of my situation, and I was told that they could come at any point.

[Jamie Laing]

They didn't want hospital.

[Jesse Nelson]

Yeah. So I lived there for, like, nearly three months. And because of the situation that I was in and I was told that they could come at any point, they wouldn't allow me to go home because obviously I went home and they came. Then the survival rate would be next to nothing. So they wanted me to be in hospital just to be ready for if they came. I was told they were going to come at 21 weeks. They were going to go at 24 weeks. And it just kept going on and on and on, which was amazing because we were just like, you know, at one point we didn't even think they were going to be here. So they came. And right before I went in for my C section, I'd had to, because I'd been in hospital and bedbound for so long. I'd been taking these blood thinning injections.

[Jamie Laing]

And so you didn't clot. Yeah, yeah.

[Jesse Nelson]

So right before I had my C section, the lady said to me, oh, sorry. Just quickly, before we, you know, they numb you back.

[Jamie Laing]

Yeah.

[Jesse Nelson]

When was the last time you had your blood thin injections? I said, oh, two hours ago. And she said, oh, Jesse, I can't. I can't give you the injection. We're gonna have to put you to sleep.

[Jamie Laing]

Oh, my God.

[Jesse Nelson]

And I was like, are you actually kidding me? So now I'm gonna miss this as well. Like, I feel like in my whole pregnancy, everything, like, was taken from me. Like, all the things you're supposed to enjoy, they were all taken from me. And I was like, that was my one thing. I was so excited to see, like, the birth of my children. And I didn't get that either. So I was like. But I was in such a state of, like, shock that they were coming that I. I kind of just Forgot about it. I just wanted them to be safe and. Well. So, anyway, I got put to sleep.

[Jamie Laing]

What are you feeling when you go to sleep?

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What.

[Jamie Laing]

What. What is the. What is.

[Jesse Nelson]

I was scared. I was so scared because they were early, and you just don't know. You don't know what the outcome is. Are they going to. Are they going to survive? Are they not? So I. I was just terrified. And Zion wasn't allowed to be in the room, so he had to be out of the room the whole time. Just.

[Jamie Laing]

I can't even imagine those emotions that you're going through.

[Jesse Nelson]

It's horrible.

[Jamie Laing]

Like, let alone all the complications and going. Being put to sleep and not even knowing what the future holds.

[Jesse Nelson]

Yeah. And then it's like you wake up and you're so out of it, so.

[Jamie Laing]

You don't know what's going on.

[Jesse Nelson]

I remember waking up and Zion was there, and he was like, they're. He was like, they're fine. They're like, they're amazing. And I was like, oh, my God. And I just wanted to see them. And it's. It's the most awful feeling when you've carried babies for nine months in your belly and you wake up, they're not there, and you can't even see them. And I remember being like, well, I want to go see them. So you can't. We can't see them yet. We need to make sure you're okay, and then you can go see them. And then when you do go see them, they're in a plastic box and you can't touch them.

[Jamie Laing]

And it's like these little things.

[Jesse Nelson]

Like, it's so unnatural as a mother to not have your baby on you. And then you literally see them in this, like. Which is essentially a plastic box, and you can't touch them. And you just have to see them with all these tubes and these masks on, and they're so tiny, and all you want to do is pick them up and cut them, and you can't. And it's just. It was horrific. And no one could have prepared me for that part because I just felt helpless. And when they would cry, like, your natural instinct, like, you'll know when. Like, to just pick them up when they cry because you want to comfort them. And when they're crying and they've got these massive masks on and these tubes, and you can't pick them up, and you just have to look at them in a box. It's like. It's horrendous. Yeah, it's hard. That is yeah, no. No one could have prepared me for that part.

[Jamie Laing]

And it's. It's. It's gonna make me go. It's. It's sad. It's sad for people who don't even have kids. When you have a kid, you. You can't even imagine.

[Jesse Nelson]

Yeah.

[Jamie Laing]

So when did you first hold them?

[Jesse Nelson]

The next day. And that was just, like, magical. It was so magical. And that's in the documentary. We filmed everything. Everything. We filmed everything.

[Jamie Laing]

Good on you. Well done for being brave enough to let cameras in and see that and do that. The awareness you're going to spread is going to you. I cannot imagine the impact, Jesse. I cannot. I cannot tell you. And, I mean, you will feel it, I'm sure, but it's incredible that you've done that because the emotions you must have been going through and the toughness and the heart and all those things.

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When.

[Jamie Laing]

When did you get to take them home?

[Jesse Nelson]

So we were in the first hospital for a week. I then had to be sent back to my local hospital. That was really tough because I obviously wasn't staying. I couldn't stay there. So then having to, like, even just that, like leaving your baby in the hands of, obviously, who are amazing, but a stranger. But a stranger. And you just have to go. It's. Honestly, I can't even describe to you how unnatural it is to have a baby and then just be taken from you. And you just can't even do what's like. Your natural instinct is just look after them and care for them and especially as a mother. Yeah. Then they were there for a month in my local hospital. And that is like. That. That is one of the hardest things I've ever had to go through because I just. Every time I would come in, having to see another woman hold and look after my baby was just, like, heartbreaking for me because I was like, they don't even know I'm their mum. They. They've been taken from me. And now every time they are picked up, they're picked up by a different woman. How? And I kept saying to Zion, how. And my mom, like, how do they even know that I'm their mom? And everyone would go to me, oh, don't be silly. They know you're mum from your scent and your heartbeat. But until you go through it, I can't explain to you how painful it is. And I'll never forget when I walked in and one of the ladies was feeding her with a bottle for the first time. And I just was like. I just felt like I Just wanted to die because I was like, that's my job. That's my job.

[Jamie Laing]

That's what I should be doing.

[Jesse Nelson]

I can't even explain to you how painful it is to like angry. Yes. And it's such a horrible feeling to have because they're there to help and look after your children and they're doing an amazing job. But at the same time, like, you can't help these feelings. It got so bad to the point where I remember when my mum. Because obviously at that time, because they're so vulnerable, you're only allowed mum and dad and grandparents and bless my mum. I remember when she came and I couldn't even let my mum hold them because I was like, I just want, like, I don't want any more women holding them because they don't know who I am. And I remember when I eventually left, I was. I don't want anyone in my house. I don't want any woman in my house. I just want. I just want them to know me. And I've only really just kind of gotten over that now that, that feeling. Even my sister, me and my sister, like look so much alike. And I remember when my sister was like so excited to hold them and I remember my whole body was like rejecting was just like, no, no, I don't want to hold them. But at the same time I knew how much she wanted to hold. And the whole time she was holding them, all I kept thinking was, we look alike. And they. They're going to think you're. I'm. You're their mum.

[Jamie Laing]

Isn't it mad? What these?

[Jesse Nelson]

Yeah.

[Jamie Laing]

But you were lioness and that's what you do. You're in protective mode.

[Jesse Nelson]

Right?

[Jamie Laing]

You just want to protect and be there and hold and everything. When did you notice that Ocean's Story maybe weren't developing as quickly?

[Jesse Nelson]

So this is the part that just. I'm trying to get over. So when they were in the Ninota world, you're constantly told, don't compare your babies because they're not going to be like full term babies. They're not going to reach the same milestones. They're not, don't. Just don't. Because you'll just talk to yourself. So that was like. And when I tell you like, they, they like drill that into you, like, don't compare your baby. So when we took them home, I noticed all the signs but didn't know what they were. I just thought it was because they were premature. So even when I was. Even when I held them for the first time, their legs were like in this frog leg position. And I remember turning to silent saying, oh, their legs are so cute. Look at this little position that they're laying on me in. And then when I took them home, when I'd lay them down to change their nappy, their bellies were like a bell shape. So sma babies, their ribs will go in and their bellies come out like this and they breathe from their belly, they won't breathe from their chest. And I remember saying to my mum, like, unusual little shaped bellies. And she was like, I know it's because they're premature and there's just. I just saw all of the signs, but I just had no idea because I was constantly told, don't compare your baby. So I just thought that was normal. And then me and Zion decided we wanted to move to Cornwall because we just wanted our babies to just. We felt like they'd been through all this trauma and we just wanted them to grow up in like, peaceful setting and just be around the sea and just live like a kid. So we went, we went to Cornwall and I didn't, I didn't. I honestly was not even taking notice of their legs because they would like, you know, they're my first set of children, so I don't know how they should be moving their legs or what they should and shouldn't be doing anyway. But they would, it was like kind of. Their feet would move just like this. But there was no, like, you know, like most babies will kick their legs quite frantically, but there's. Theirs were just like this. And, you know, because we'd moved six hours away now my mum wasn't with me every day, so she, I think, noticed how much it deteriorated. And she was looking at them in their little rockers and she said, jessie, they don't, they don't move their legs very much. Have you noticed that? And I was like, really? And she was like, yeah, have you not noticed they just don't kick their legs and they should be kicking their legs. I said, mum, they're premature. They're like, you're comparing them. And she kept comparing them to my nephew. She was like, but don't you remember when George was a baby and he would really kick? And I said, but George was a full term baby. You can't compare them. And we've been told that. She was like, I know, Jessie, but I just. Something's not right. She was like, there's something not right. And my mum is such a. Oh my God, she's such A worrier. She worries about everything, like, everything. And bit like me, thinks the worst in every situation. And so I just thought that was her just worrying. Yeah. And then a week went by and I remember changing the nappy and just thinking, oh, they actually don't move their legs at all. Like, for some reason they just stopped, like, stopped. There was nothing. It was like that little toe would move and I'd be like. And I remember saying, designs on this is. I actually think my mum's right. Like, this isn't. This isn't normal. I said, we need to go see someone because this. Something's not right. So we went and saw the pediatrician and he. They do all these, like, tests on them. It's horrible. They, like, they're always like, well, they are with babies that I've sma. They're like rag dolls. They can't. They're so, like, even now when I hold them, people still think they're like newborn babies because the way that I have to hold them because I can't hold themselves up, they're like newborn babies. So they're very floppy. They can't do anything. So he's like. He's like tipping them upside down and he's doing all this stuff on them. And you're a bit like, it's very overwhelming. And he said, okay. And I just, you know. You just know. You just. You just. I don't know if it's a mother's instinct or it's just an instinct. I just knew from the, like, way he was speaking to me that something serious was going to happen. And he said, okay, they're showing signs of hypertonia. And he said, well, before I get into that, I want to get them for some blood tests and I want to do a brain scan on them. I was like, a brain scan? He said, yeah, one of their heads looks quite big and I'm worried she's got fluid on her brain. And I was like, okay. And he was like, so. So we need to do that straight away. I want to do that straight away. I said, okay, how long's that going to take? He said, I don't know. Could. Could be a couple of weeks. I said, well, you know, at that point I was like, I'm going home, I'm going home and I'm going to go see someone privately. And I remember walking out of the room and I just burst into tears. And Zion's very, like, complete opposite to me. He thinks the best in every situation, which is probably, you know, how we all should be, but I'm just not wired that way.

[Jamie Laing]

No, but you've also. You've also been in fight or flight mode since 21 weeks, right? So you're already alert on everything.

[Jesse Nelson]

Yeah. And I said, we're going home. And I remember getting on the phone to my mum and she was like, what did they say? What did they say? And I said, oh, so they're showing signs of hypertonia. She was like, what's that? And I said, well, he told me it's poor muscle tone and everyone's older. That's all. They're just gonna need physio. And Diane was like, they're just gonna need physiogists. We're really worrying that. It's like. And I was like, I just. I just knew. I can't. I can't explain this feeling I had. I just knew. And everyone was like, don't google. Don't google. Well, of course I googled. And the first thing that comes up when you Google Hypertonia is SMA type 1. And it says, if you do not get treatment, your baby will not make it past the age of two. And I just remember feeling like, you know, like in a movie, when have you seen it? When, like, the person is standing and the whole world is just spinning around them and they're like, that's that what that moment felt like? And I. Before I even read what the symptoms were, I just knew that's what they had. I just knew it. I can't. I don't know why. I just knew. And then it showed me the symptoms, and every single symptom was what they were showing. And I said, zion, just read that. He's like, that's not what they've got. That's not what they've got. You're being negative. You're being negative. I said, I'm not being negative. I don't know. That's what they've got. I said, and. And if this is the case, like, we need to do something, because times of the essence now, like, well, this is not a joke. So we took them to a private pediatrician in London, and that was one of the worst parts. So he did pretty much the same thing that the other guy did, but he didn't beat around the bush. He went, well, this is really alarming.

[Jamie Laing]

He said that?

[Jesse Nelson]

Yeah. And I was like, okay, what do you mean by that? And he said, well, it's like your children are practically paralyzed from the waist down. And at that point, I was just like, okay. I said, all Right. What do we need to do? He said, well, you need to get a blood test. He said, because this. This is very serious. Like, I believe this is very serious. I said, okay, where do I get a blood test done? Where can I go privately? He said, you can't. I said, what do you mean you can't get a private blood test? He said, you can't. They won't do a blood test privately on a baby. These. This little. So at this point, I'm like, weeks have gone by now, right? And I'm like, this is like. And. And the craziest thing as well is that now I'm really starting to see their legs deteriorate because it's that quick. So now I'm like, then there's no movement. Now when I saw there was a little bit, and now there's nothing. So he was like, right, first thing I want to do is send you for an emg. I said, what's an emg? He's like, well, it's going to tell us whether it's nerves or it's muscles. If it's nerves, then that means that's to do with the brain. And if it's muscles, that means it's, you know, that they don't. The muscles are not working. I was like, right, okay. So he's like, so I'm going to send you to have an EMG done. And I was like, all right, so after that, then what happens? And he was like, well, it'll give us, like, a 95% accuration of, you know, what the diagnosis is going to be, but until we get a blood test, we're not going to know. I was like, oh, how can I get the blood test? He was like, what I need to do is write you up a letter, and then you're going to need to take that to your local hospital. And I'm just thinking, oh, my God. This is just days and days and days of, like, wasting time. So they had their emg. And I said to the lady, how long do these results take? She'd, oh, well, I'll have them by the end of the day. And I was like, oh, brilliant. So can you send them over to the. To the doctor? So she said, yeah. So I rang him and he wasn't answering. And his secretary answered the phone. She was like, he's gone away on holiday. And I'm like, is this a joke? I'm like, okay, well, like, I need these results. Like, this is very serious.

[Jamie Laing]

Oh, my God.

[Jesse Nelson]

And she was like, I'm Gonna try my best, but he is away on holiday. And then within a few hours, she called me and she said, the doctor would like to speak to you. I just knew, I knew, I just knew because I was like, he wouldn't leave it. And then he did a zoom with us and he said, I am. And from the test results, 95% sure that they've got SMA Type 1. And I said, okay, so. So now what? At that point, I was in. I feel like I'd kind of already, like, got to that point that they had it. And at this point my brain was like, well, now we need to just get them the treatment. So I wasn't really processing the diagnosis. I was more like, we just need to, like, now take the steps to get them the treatment. And how quickly can we do that? Because they're literally deteriorating in front of us. So he said, we. I'm going to write you this letter and the best thing you can do right now because you, you can't take them to Great Ormond Street. So he said, you need to go to your local hospital and you need to explain to them how severe and, like, important it is that they look at your babies and then once they have done their assessment on them, then they can refer you to Great Ormond street and then it's whether Great Ormond street think this is serious enough. So I'm like, you know when you're just, like. You feel so helpless, it's like.

[Jamie Laing]

And you're just like, you, you. You can't understand why people aren't reacting in a way that you were like, we need to do something, everyone, it needs to be now, now, now.

[Jesse Nelson]

So he wrote us the letter that night. We went to A E and I just explained the situation. I showed them and they said, okay. They saw us straight away. There was no waiting around at this point. We now have to. They've looked at the babies and they've said, they're underweight, they're severely underweight. Bearing in mind, prior to all of this happening, I'd been taking them to the GP and saying, my babies are not feeding. They don't take their bottle. They're crying. At one point I was like, they got sore throat. Is that why they're not swallowing? And they were like, oh, you know, they're premature. And, you know, you just got to keep trying. Little and often, little and often. And that was all. That was all I was ever told. There was no, well, yeah, they're underweight. Like, let's, like, take this seriously. So yeah. So then the hospital said, they're underweight, they need to go on feeding tubes because they just were not. They'd take about 10 mil on the bottle. So then they went on feeding tubes and they had to stay in hospital for two weeks before. You go into great.

[Jamie Laing]

And it feels like you're back to where you began.

[Jesse Nelson]

Yeah. And then all that was, like, coming up. I, like, felt like I was being triggered.

[Jamie Laing]

Yeah.

[Jesse Nelson]

So, yeah. So then they were in hospital for two weeks, then they went to Great Ormond street. And that. That was a whole nother level. I just remember walking into this room and there was, like, eight people, like, waiting to see us. And it's so overwhelming because you're like. Like, you. You really, like, hits you at how serious it is. And each person is, like, assigned to do something to, like, test your baby. Walked into the room and it's just so. It was just like. It sounds so dramatic to say it, but it's like the feeling I got when I walked into the room was like someone had died. So then they said, right, first of all, we want to sit you down and we just want you to tell us what you've been experiencing, what's been going on, how long you've, like, noticed these signs for. So I did all of that. Then they said, okay, cool, we're going to assess the babies now. You know when you're like, oh, my gosh, like, how many fucking times we need to keep assessing the babies. Like, I've done this so many times now. Like, it's. And I get it. They have to.

[Jamie Laing]

But we know what's going on here.

[Jesse Nelson]

Yeah. And I'm just like, just do the bloods at this point. Like, really? So they do their assessment. They say the same thing. You know, it's 95. We're 95. Sure. That's. They've got SMA type one. But until we get these bloods done. So, you know, we need to get these bloods done also. We need you to sign these forms now that you are okay with them starting getting this treatment, because time is of the essence now, obviously, as you know. And then they start telling you, you know, what your baby survival rate is, and it's just. Yeah, it's a lot. And then they said, okay, well, it should take about three days for the bloods to come back. And then, you know, once we've got the confirmation, they can start the first course of treatment. And then we took them home, and then we got a zoom call, and that was when they told us. But I was already there. I was. I already knew. There was no shock for me when they told me.

[Jamie Laing]

I'm so sorry.

[Jesse Nelson]

Thank you.

[Jamie Laing]

How are the girls now?

[Jesse Nelson]

Oh, they're amazing, really. But they've always been amazing. Like, you know, even through everything they've gone through, they've always just smiled and been so happy and showed so much resilience. And it's like the one thing that I always take from it is that they don't know. You know, they. This is all they've ever known, which is so sad. Right? But, you know, they're. They're not old enough to know what's going on. And they have each other. And do you know how blessed I am that they have their twins and they're going through it together. They're never going to be alone. And that just, like, makes me feel so much better about the situation. But, you know, they're doing as good as they can be right now. But the thing is with SMA is it's like everything's so uncertain, and that's the part that can really drive you crazy because you can really go down a dark hole. They're going to do this? Are they going to do that? And you just drive yourself mad because.

[Jamie Laing]

You have to stay away from that.

[Jesse Nelson]

Yeah. You just have to take each day.

[Jamie Laing]

As it comes, 100%, you've got to.

[Jesse Nelson]

Win and take any little thing that happens as a win in terms of, you know, progress.

[Jamie Laing]

Can I ask a completely naive question? Will they potentially be able to walk?

[Jesse Nelson]

They've told us no, but, you know, I am a big believer of manifestation. And, you know, look how far they've come. Look what they've done already and look what they've beat. And I'm like, who says they won't? So I'm gonna just do everything in my power to give them, you know, the best opportunity possible to be able to, you know, walk. But if they don't, it's. It doesn't matter. That doesn't define who they are completely. They're ins. And, you know, that's why I feel so like. Like grateful and happy and proud that, like, I'd let the cameras in at this time, because I cannot wait. Yeah. Because there'll probably be a day maybe when the girls turn to me and they say, like, mommy, I don't think I can do that. And I'll say, I'll turn the TV on and I'll play them the documentary and I'll say, yes, you fucking can, because look what you did. And I'm so happy that I have that to show them because they have just overcome so much and they are so tiny and I'm like, there's nothing you won't be able to do.

[Jamie Laing]

And you spoke about your mum earlier.

[Jesse Nelson]

She's the best. I could not. I'd be fucked without my mum. Yeah, she's just, honestly. Yeah, she's just amazing. But it's, it's a real journey. It's like every day's different but you just.

[Jamie Laing]

Yeah, but you know what, Jesse? You're the journey that you've had in your life, right? From when you were a kid to going on X factor and doing little mix and having the tough time you had in little mix, right? And having, you know, the horrendous amount of abuse that you had, you know, and all those things are just kind of like you're this survivor and you're, you are. And you, you, you're resilient and you keep going and your babies couldn't have a better mum.

[Jesse Nelson]

Thank you.

[Jamie Laing]

Truthfully, right?

[Jesse Nelson]

So sweet.

[Jamie Laing]

Truthfully, right?

[Jesse Nelson]

So much.

[Jamie Laing]

And you know, I think it's your best friend in your documentary says Jesse turns pain into power, which is kind of incredible, right? Yeah.

[Jesse Nelson]

I mean, it doesn't feel like it when I'm in that moment, but I mean, that's lovely.

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[Jamie Laing]

There's a Hill prick test that you've mentioned.

[Jesse Nelson]

Yes.

[Jamie Laing]

That can test for sma.

[Jesse Nelson]

Yeah. Does that prove in this country? So it's like 45 countries where they do test for it and this is one of the countries that don't. I think it's just, it's now just been made part of the Hill prick test in Scotland. They're saying that it's going to take up to six years potentially for it to be in the Hill prick test here, which is like, just mad because it's like all these babies that are going to suffer and all these families that are going to suffer and they.

[Jamie Laing]

Don'T have to explain that to me. So the test can prevent it.

[Jesse Nelson]

So the test will tell you whether they have SMA and what type, how severe it is. And then once they've got that diagnosis, it's then about getting treatment as soon.

[Jamie Laing]

As possible as possible because then that can then prevent things from deteriorating.

[Jesse Nelson]

I tell you, this treatment is life changing. I feel like I need like to show you because sometimes I can verbally say it, but until you see it, it's like you don't actually understand the severity. It's literally the case of either your child will be in a wheelchair or your child will walk if you get the treatment early enough. And it's just like when you go to Great Ormond street, there's a whole corridor of like families on the wall and all their different diagnosis and what they've been through. And there's two girls of SMA Type 1, one of the sisters is in a wheelchair because obviously the parents didn't know and then, you know, unfortunately didn't get her treatment in time to be able to save her legs. And then there's the sister. When they, when they went on to have another child, they knew what they were going to be dealing with, so they got her treatment early enough. And she walks, she's does gymnastics, she's. And you wouldn't even know she has sma. And that's the difference.

[Jamie Laing]

Why didn't they do the Hillbrook testing?

[Jesse Nelson]

But the part that just really like breaks my heart is that it costs so much more for than what the NHS are going to have to find out for all the stuff, the equipment the everything that then the child then has to have because they don't haven't had this treatment. Honestly, if I showed you the hallway of my house every week, every two weeks I get sent all their medical stuff that they need because the stuff I have to do on them every day is just. Yeah, it's like. And it's just like who, who gets to decide whether your child will walk or not.

[Jamie Laing]

If. And I'm sure there are their parents listening now who perhaps their kids have SMA or they've just found the diagnosis. What would you say to them if.

[Jesse Nelson]

They'Ve just found out?

[Jamie Laing]

Yeah.

[Jesse Nelson]

Oh God, I don't even know. I'm still figuring out myself just to take the only bit of advice that I have if you've just found out is to just take each day as it comes. That's all you can do. And it's, you know, like changed my life forever. But I am just still so grateful to, you know, the fact that they had their treatment and they're still here because it's just so sad that there's been so many families that didn't get the treatment and their children died. And it's just that shouldn't be happening in this day and age when there is treatment that really fucking works and changes their life so dramatically. And it fucks me off that it took for me with a platform for it to be taken seriously. These poor families have been fighting for years and years and years to get this changed and just been ignored. And then what? I come along because I have some. A few million followers now you're going to take it seriously. It's like that shouldn't be the case but you know, it is what it is and you just gotta do what I can.

[Jamie Laing]

Yeah, but that's why you speaking out is going to help so many people.

[Jesse Nelson]

Yeah.

[Jamie Laing]

Which is just so incredible. You know, you as you've been through all so much. When you look back now and having experienced this, do you sometimes think the stuff that I used to care about and worry about doesn't even matter?

[Jesse Nelson]

But this is why I say my girls have made me the person I've always wanted to be. Because when something like this happens in your life, oh my God, everything else just feels so insignificant.

[Jamie Laing]

Does it really?

[Jesse Nelson]

Oh my gosh, Jamie, like the shit I used to worry about. I'm like, how people pathetic like how pathetic that you worried about that. And it's like they're just, you know, they. I feel like they've just been eradicated now. So like you know, I've always, always been so conscious of, you know, what I look like and my way and I honestly couldn't give two anymore. I could not give two shits because it's just so insignificant to my life right now and it just puts everything into perspective. But, and that's like why I'm just so grateful for them as well because they just, they complete, they've just changed my whole look like outlook on life and how I feel about myself. And they're just amazing.

[Jamie Laing]

Jesse, if you're listening, I just want to thank you from the bottom of my heart, my team's heart, from everyone here for being so, so open. You're just an inspiration. And to everyone who's listening, I'm complete awe of Jesse. I know you are too. Her strength, her courage, her willingness to talk so openly about such a raw and emotional part of her life. I mean, I cannot even imagine what she is dealing with right now. Having just had a kid and knowing that all you care about with your baby is them to be happy and healthy, that's all you want. And Jesse being so open about that is wow. Now we're gonna be back on Friday with part two. Okay. With Jesse Nelson. Make sure you don't miss it because it is incredible.

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[Jesse Nelson]

Love your service or get your money.

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[Jesse Nelson]

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