Jesy Nelson revealed her daughter Ocean accidentally pulled her feeding tube out, in a heartbreaking admission.
The Little Mix star, 34, welcomed twin girls Ocean Jade and Story Monroe prematurely in May 2025 with her ex-fiancé Zion Foster.
Last month, she revealed the devastating news that both babies had been diagnosed with genetic neuromuscular disease, Spinal Muscular Atrophy Type 1 (SMA1).
As SMA1 causes progressive muscle weakness and wasting, the girls have to have feeding tubes due to severe swallowing, sucking and breathing difficulties.
However, in a heart-rending confession, the singer candidly said that she ‘forgets what her little face looks like’ without the tube, saying it served as a reminder of how much we take for granted.
Jesy Nelson made a heartbreaking admission on Thursday, as she shared an adorable video of her daughter Ocean amid her twin girls’ battle with Spinal Muscular Atrophy Type 1 (seen last month)
The Little Mix star, 34, welcomed twin girls Ocean Jade and Story Monroe prematurely in May 2025 with her ex-fiancé Zion Foster (pictured)
Taking to her Instagram Stories on Thursday morning, Jesy revealed that Ocean had accidentally pulled her feeding tube out, sharing a sweet clip of the little girl smiling up at her mum
Cooing at Ocean while reaching down to squeeze her little cheeks, Jesy captioned the post: ‘Ocean pulled out her feeding tube this morning. I forget what her little face looks like without it.
‘We really take for granted the little things. What I would give to see her little face like this everyday.’
On Friday, Jesy released her documentary Life After Little Mix, where she spoke about her babies’ diagnosis, as well as the truth behind her decision to leave the band in 2020.
The star is currently campaigning for the NHS to expand the standard heel prick test to check for SMA1, recently succeeding in getting a petition calling for the government to fund and fast-track to process, to reach over 120,000 signatures.
She has said that had her twins had the test, which costs around £1, and been diagnosed and started treatment earlier, their legs could’ve been saved.
As she continues to push for screening for the condition to be included in the newborn blood spot test and care for her daughters’ medical needs, Jesy revealed she has parked her music career.
Appearing on Heart FM’s Breakfast show on Thursday, she told Amanda Holden and Jamie Theakston: ‘Look listen I’d never say never to music, but for me, my girls are my main focus.
‘I’ll be honest with you, I’ve not got time, I really don’t. They are my whole heart and soul and my main focus, and I want to continue advocating for them and getting this heel prick test changed and getting them strong, that’s my main focus.
However, in a heart-rending confession, the singer candidly said that she ‘forgets what her little face looks like’ without the tube, saying it served as a reminder of how much we take for granted (seen wearing tube earlier in the week)
As SMA1 causes progressive muscle weakness and wasting, the girl have to have feeding tubes due to severe swallowing, sucking and breathing difficulties (Story seen)
‘Because that’s going to determine their future. That’s my main focus right now.’
She previously described caring for the twins to Daily Mail as an emotional rollercoaster, with some days being ‘really f***ing s***’ and others slightly lighter.
Jesy explained that she and ex-partner Zion never expected to be caring for their babies in such a way, and having to provide for their medical needs is a daily struggle.
She told how the medical procedures her babies must endure each day leave her feeling like she’s hurting them as they cry and scream.
‘Every day is so full-on – I can speak about it, but I’ll never be able to explain how intense it is until you see it,’ Jesy told the Daily Mail.
‘There are a lot of medical things I have to do which I am still really struggling with, I’ll be honest with you. I never expected that to be part of my life and it’s tough.
‘They’re so tiny and I have to do things which I know are doing them good but at the time, when they’re crying and screaming, it feels like I’m hurting them and I hate that I have to be the person to do that. I just want to be their mum.’
When asked about a typical day with her twin daughters, Jesy said it’s impossible to describe, as no day is ever the same emotionally.
The star is currently campaigning for the NHS to expand the standard heel prick test to check for SMA1, recently succeeding in getting a petition calling for the government to fund and fast-track to process, to reach over 120,000 signatures
Speaking to Jamie Laing on his Great Company podcast, Jesy said she was hopeful that her babies will defy the odds now that they are receiving treatment
She added: ‘I don’t know how to explain my life in the day because sometimes it’s really f***ing s*** and then, other times, I don’t necessarily forget about their diagnosis but there are days [that] are lighter and they’re not as heavy.
‘So many mums have told me that’s what it’s going to be like and that’s why I need to take each day as it comes. It’s a rollercoaster; I don’t feel like this is going to be a steady journey at all.’
She has also addressed the tragic prognosis that Ocean and Story may not live beyond the age of two.
Speaking to Jamie Laing on his Great Company podcast, Jesy said she was hopeful that her babies will defy the odds now that they are receiving treatment.
‘So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body,’ she said.
‘Their muscles are now 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.
‘It’s not OK, 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 the strongest, most resilient babies and I really believe that they are going to defy all the odds.’
