Jesy Nelson has sharply criticised healthcare professionals for failing to identify symptoms of Spinal Muscular Atrophy in her twin daughters, describing the situation as “a matter of life and death”.
The former Little Mix singer said she was left angry that her celebrity status was seemingly required for concerns about the condition to be taken seriously.
The 34-year-old’s daughters, Ocean and Story, were diagnosed with SMA Type 1 after months of missed warning signs, despite repeated contact with medical staff.
Speaking in a new interview, Ms Nelson said: “People are starting to take notice and take it seriously but it never should’ve took for me for it to be taken seriously. That’s the part that makes me feel so angry.”
TRENDING
Stories
Videos
Your Say
Jesy Nelson's twin girls were born prematurely in May 2025
| INSTAGRAMShe added: “This isn’t just anything, this is a matter of life and death for someone’s child.”
The twins were born prematurely in May 2025 and were not diagnosed until they were six months old.
Ms Nelson said it was her mother, Janice White, who first raised concerns after noticing the girls were not moving their legs as expected.
Despite frequent visits from healthcare professionals monitoring the premature infants, she said none of them identified the symptoms.
Ms Nelson lives with her twin girls in Essex
| INSTAGRAMShe explained on Sky News’ The UK Tonight programme: “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."
Ms Nelson recalled being repeatedly reassured that her daughters were “fine and healthy and doing really well” during medical check-ups.
She said she “dreads to think” what position she would be in had her mother not intervened when she did.
Medical staff on the neonatal ward had also advised her not to compare the twins’ development with other babies because of their premature birth.
LATEST DEVELOPMENTS
The singer's mother was the first to spot symptoms in her twins
| INSTAGRAM“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,” she said.
Her pregnancy had already been traumatic, complicated by twin-to-twin transfusion syndrome, which left her particularly anxious after bringing the babies home.
Ms Nelson said she was vigilant about their breathing and temperature, but not focussed on whether their legs were moving.
“I wasn’t checking to see if their legs are still moving,” she admitted, describing this as deeply frustrating in hindsight.
Jesy Nelson (left) shot to fame as part of girl band Little Mix | GETTYShe has since taken her campaign directly to government, meeting with Health Secretary Wes Streeting to urge that SMA screening be added to the NHS newborn heel prick test.
During the emotional meeting, Ms Nelson showed footage of a child with SMA Type 1 using a wheelchair, leaving the Health Secretary visibly moved as he pledged to pursue changes.
The UK National Screening Committee last rejected adding SMA to routine newborn testing in 2018, but the issue is currently under review, with a decision not expected until 2028.
When treated at or near birth before symptoms develop, SMA can be largely prevented, with many children experiencing minimal or no effects.
Most developed nations already screen newborns for the condition.
Ms Nelson has spoken openly about how the diagnosis has transformed her life, saying her home now resembles “a hospital” filled with medical equipment.
One of her daughters, Story, requires overnight breathing support, while both girls use cough assist machines and feeding tubes.
“I just want to be their mum, I don’t want to be a nurse,” she said.
Despite the challenges, she remains determined to push for reform, adding: “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.”