Jesy Nelson has hit out against healthcare staff who visited her twin daughters in the days after their premature birth as ‘really worrying’ for not spotting the signs of SMA.
Earlier this month, the former Little Mix star, 34, explained that after ‘the most gruelling three or four months’ her daughters Ocean Jade and Story Monroe, who she shares with Zion Foster, have been diagnosed with Spinal Muscular Atrophy (SMA1).
It wasn’t until the twins were six months old that the alarm bells were rung, when her mum, Janice White, noticed the twins weren’t ‘moving their legs properly’.
But Jesy explained that in the months prior to their diagnosis, following their premature birth, the twins were being monitored by professionals ‘a lot’ yet ‘none of them spotted the signs’.
Speaking to Sky News‘ The UK Tonight programme with Sarah-Jane Mee, Jesy admitted it was ‘difficult from the get go’ for her to spot symptoms and raise the alarm, given what she was ‘told’ by staff leaving the hospital.
The singer said: ‘It took for my mum to spot the signs, and that’s what’s really worrying, because we had healthcare visitors come a lot and none of them spotted the signs.’
Jesy Nelson has hit out against healthcare staff who visited her twin daughters in the days after their premature birth as ‘really worrying’ for not spotting the signs of SMA
Speaking to Sky News’ The UK Tonight programme with Sarah-Jane Mee, Jesy admitted it was ‘difficult from the get go’ for her to spot symptoms
Asked whether she had to ‘fight’ to get ‘health professionals to take her seriously’, Jesy added: ‘It was difficult from the very get-go.
‘When I was on the neonatal ward, I was constantly told before I left, “Please don’t compare your babies as they are never going to reach the same milestones as other babies” because they were premature.
‘I went through such a traumatic experience with my pregnancy, with the TTTS (twin-to-twin transfusion syndrome), so when I took them home I was very on edge about everything.
‘I feel like most mums are anyway, but I was just [looking at them] 24/7 with the temperature gun constantly, but the one thing I wasn’t taking notice of was the movement of their legs.’
Furious that it had taken for her to speak up to raise awareness, Jesy added: ‘[I am] sad and angry, I go through so many emotions when I personally meet families and I hear their stories.
‘It makes me feel so sad because, great that people are starting to take notice and take it seriously but it never should have taken for me to come along to be taken seriously.
‘That’s the part that makes me so angry, this is just anything, this is a matter of life or death for someone’s child.’
‘Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms,’ according to the NHS website.
Jesy explained that in the months prior to their diagnosis, following their premature birth, the twins were being monitored by professionals ‘a lot’ yet ‘none of them spotted the signs’
The star recently struggled to hold back her tears as she opened up about the diagnosis process
Jesy, 34, explained that after ‘the most gruelling three or four months’ her daughters Ocean Jade and Story Monro, have been diagnosed with Spinal Muscular Atrophy (SMA1)
Earlier this month, Jesy appeared on This Morning to give a heartbreaking update on her twin daughters’ muscle disease in her what was her first TV interview since their devastating diagnosis.
The singer admitted that her home now ‘looks like a hospital’ after learning how to look after her twins and cater to their complex needs as she shared the most difficult aspects of the diagnosis.
Getting very emotional about her girls, Jesy said: ‘We’ve been told that they will probably never walk, they’ll probably never regain their neck strength. They are gonna be in wheelchairs.
‘There’s been so many stories where parents have been told this and then their children have gone on to do incredible things, so I believe that you’ve just got to manifest that.
‘They are still smiling, they’re still happy. They have each other, and that’s like the main thing that I’m like so grateful for because they could be doing this by themselves, but they’re twins and they’re going through this together.
‘My whole life has just completely changed. If you came to my house, it looks like a hospital.
‘My whole hallway is filled up with medical stuff and it’s just crazy how you can go from one extreme to the next.
‘Story has to be on a breathing machine at night because she isn’t strong enough to breathe by herself at night, they have to have cough assists machines to help them cough, I have to put feeding tubes down their nose to like get out secretions off their chest.
Jesy Nelson held back her emotions on This Morning as she shared a heartbreaking update on her twin daughters’ muscle disease in her first TV interview since their devastating diagnosis
Cat reached out to support Jesy as she became overwhelmed during the interview
‘I’ve had to learn this within the space of a few days of getting their diagnosis, and it’s just so much to deal with while you’re also trying to deal with this like horrendous thing that’s just happened and still be a mum as well.
‘That’s the part that I really, I’m still struggling with it, I won’t lie, but that is the part that like really gets me, is I just want to be their mum, I don’t want to be a nurse.
‘All I can do is just try my best to be there for them. Give them positive energy.’
Looking back over the signs that the two girls had been battling the condition before their diagnosis, she added: ‘I actually knew and saw all of the signs before I even know knew what SMA was.
‘But when I left the NICU, it was hammered home to me, “Don’t compare your baby, they’re not going to reach the same milestones, take them as they are” because they were premature.
‘When I took them home from NICU, the only thing I was really concerned about at that time was like checking their temperature, making sure they’re still breathing. I’m not checking to see if their legs are still moving…
‘And that’s what’s frustrating knowing that for me, if this was the cards I was always going to get dealt and there was nothing I could do about it, then it’s almost easier for me to accept.’
Heaping praise on her mum for spotting the signs that eventually prompted her to take further action, she said: ‘It took for my mum to be like, “They don’t move their legs how they should be moving”.
The singer admitted that her home now ‘looks like a hospital’ after learning how to look after her twins and cater to their complex needs as she shared the most difficult aspects of the diagnosis
Looking back over the signs that the two girls had been battling the condition before their diagnosis, Jesy explained how vital it is parents get an early diagnosis
‘Bless my mum, she’s a worrier, and I just thought my mum was being a worrier – but I noticed they were moving [their legs] less and less and less, until it just stops.
‘That is why it’s so important and vital to get treatment from birth and that it’s detected from birth.’
Opening up on her decision to share her story with the world, Jesy continued: ‘I wanted it to get as much reach as possible to raise awareness about it, it’s what I wanted to do.
‘If I’d seen someone else’s video, maybe, just maybe I could have prevented this from happening if I’d have seen a video and caught it early enough.
‘Yes, I could have dealt with it privately, but at the same time I’m like, I have this platform and I almost feel like I’ve got a duty of care to like raise awareness about it.
‘I don’t know if this is even crazy to say this, like it feels selfish to keep this to myself and not potentially save a child’s life. I’m going to shout to the rooftops about this.
‘I could have saved their legs… I don’t think I’m ever going to get over this or accept it, but I’m going to try my best to make change.’
The genetic neuromuscular disease causes progressive muscle weakness and wasting due to motor neuron loss.
Jess wants to spread awareness about the condition so that other parents will know the symptoms to look out for
If SMA1 is treated pre-symptomatically (at or near birth), the disease can be largely prevented, and many children develop with minimal or no symptoms
Jesy was tearful as she explained that the condition ‘affects every muscle in the body down to legs, arms, breathing and swallowing’, adding that ‘essentially what it does over time is it kills the muscles in the body’.
Since opening up about the diagnosis of her daughters, Jesy has been campaigning the testing becoming standard for newborn babies across the country – after it was last ruled out in 2018 by the UK NSC.
The UK National Screening Committee are currently reviewing the case again – with the next report on the process to formally adopt the tests within the NHS expected to be in progress until 2028.
If SMA1 is treated pre-symptomatically (at or near birth), the disease can be largely prevented, and many children develop with minimal or no symptoms.
A test uses a heel prick to take blood to screen for the condition, and early awareness can help children get vital treatment to manage the symptoms sooner.
Jesy met with Health Secretary Wes Streeting after launching the campaign, and fought back tears as she begged for change to the SMA Type 1 testing.
She sobbed ‘no parent should have to go through this’ as she met with the MP to discuss screening children at birth for the rare genetic issue.
The former Little Mix star was seen breaking down in tears after showing Wes a video of a child affected by SMA type 1 in a wheelchair, and left the MP struggling to hold back emotions as he vowed to make changes.
