Jesy Nelson has shared what doctors told her when she raised the alarm over the health of her newborn twins – and how she was constantly told not to compare them to other babies
09:58, 06 Jan 2026Updated 09:58, 06 Jan 2026
Jesy Nelson says doctors initially dismissed her fears for her twin babies (Image: jesynelson/Instagram)
Pop star Jesy Nelson has shared the dismissive response doctors gave her when she tried to tell them there was something not right with her twin babies.
The former Little Mix Star, 34, revealed her daughters Ocean Jade and Story Monroe have been diagnosed with spinal muscular atrophy type 1. This is a rare genetic condition causing muscle weakness which can become fatal if left undiagnosed.
Jesy, who gave birth to the twins prematurely at 31 weeks with her fiance Zion said doctors told her there wasn’t anything to worry about as they were premature – and not to compare them to other babies despite not being able to move the same way as normal newborns.
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Jesy Nelson revealed her daughters have been diagnosed with Spinal Muscular Atrophy type 1(Image: Jesy Nelson / Instagram)
The Brit Award winner said it was her mum Janice White who noticed there could be something wrong but was reassured by health visitors, especially when the couple grew concerned about their feeding. However, they were told the babies were “great and healthy” and there wasn’t anything to worry about.
She explained in a heartwrenching Instagram post on Sunday: “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.“It wasn’t really a concern to me at the time because from the minute I left NICU (Neonatal Intensive Care Unit), I was told ‘your babies are premature, so do not compare your babies to other babies.
“They won’t reach the same milestones, take them as they are and they will get where they need to be when they do’.” But the knew mum knew something wasn’t right and noticed her twins began feeding less.
Jesy explained: “We would take them to the GP, we were saying our babies are not feeding as frequently as they should. They were like ‘Don’t worry it’s fine, just keep trying little and often.”
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Then after months of testing, Ocean and Story were eventually diagnosed with the severe muscular disease, called SMA Type 1 and Jesy has admitted it’s been “the most heartbreaking time of my life,” and her “whole life has done a 360.”
“I’m grieving a life I thought I was going to have with my children,” she emotionally said, before acknowledging that she is grateful to have them. “I truly believe that my girls will defy all odds. And with the right help, they will fight this, and go on to do things that have never been done.”
Using her platform, the singer now hopes to raise awareness of the early warning signs of SMA. She said that she raised some concerns to doctors that were initially dismissed and how a simple test at birth may have been able to save her children’s muscles.
SMA happens when there’s a mutation in the SMN1 gene. This affects a specific nerve cells in the spinal cord that controls muscle movement. Without this cell, muscles don’t receive the nerve signals needed to move which causes them to weaken and waste away over time.
It is a progressive condition with no cure but there are treatments available to help manage the symptoms. Early diagnosis and treatment is crucial as it can help save muscles that aren’t affected yet but once a muscle starts to atrophy it usually can’t be fully restored.
According to the NHS, common symptoms include:
Muscle weakness, such as floppy or weak arms and legsMovement problems, such as difficulty sitting up, crawling or walkingProblems with breathing or swallowingTwitching or shaking muscles, known as tremorsBone and joint problems, such as an unusually curved spines
Jesy also shared some other signs for parents to look out for like “floppiness”, frog-like legs that don’t move much, bell-shaped bellies and rapid breathing.
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