Jesy Nelson has shared a deeply emotional moment from her life as a mother, revealing that her baby daughter Ocean accidentally pulled out her feeding tube — a moment that left the singer reflecting on how much most people take the smallest things for granted.
The former Little Mix star, 34, welcomed premature twin daughters Ocean Jade and Story Monroe in May 2025 with her ex-fiancé Zion Foster.
Last month, Jesy bravely revealed the devastating news that both babies had been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1) — a rare and severe genetic neuromuscular condition.
‘I Forget What Her Little Face Looks Like Without It’
Taking to Instagram Stories on Thursday morning, Jesy shared an adorable clip of Ocean smiling up at her after accidentally pulling out her feeding tube.
Cooing over her daughter and gently squeezing her cheeks, Jesy wrote:
“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 every day.”
The candid confession struck a chord with fans, offering a raw glimpse into the daily realities of caring for children with complex medical needs.
Living With SMA1: A Daily Battle
SMA1 causes progressive muscle weakness and wasting, affecting swallowing, breathing and movement. As a result, both Ocean and Story rely on feeding tubes due to severe difficulties with sucking and swallowing.
Jesy has spoken openly about how confronting it is to watch her babies undergo medical procedures, admitting that at times it feels like she is hurting them — even though she knows everything she does is to keep them alive.
“I just want to be their mum,” she previously told the Daily Mail, describing the experience as an emotional rollercoaster with some days being “really fing s” and others slightly lighter.
Parking Music for Motherhood
Jesy has temporarily stepped away from her music career to focus entirely on her daughters and their future.
Speaking on Heart FM’s Breakfast show, she admitted:
“My girls are my whole heart and soul. I haven’t got time for anything else right now.
I want to continue advocating for them, getting this heel prick test changed, and getting them strong. That’s my main focus.”
She explained that earlier diagnosis through newborn screening could have significantly altered her daughters’ prognosis.
Campaigning for Change
The singer is now campaigning for the NHS to expand the standard newborn heel prick test to include SMA1 — a test that costs around £1. Her petition calling for government funding and fast-tracking the screening has already surpassed 120,000 signatures.
Jesy has said that had her twins been tested and treated earlier, some of the muscle damage they now face could have been prevented.
‘They Are Going to Defy the Odds’
Despite the harrowing prognosis that children with untreated SMA1 may not live beyond the age of two, Jesy remains fiercely hopeful.
Speaking on Jamie Laing’s Great Company podcast, she said:
“My girls are the strongest, most resilient babies. I really believe they are going to defy all the odds.”
She added that life now is unpredictable, intense and emotionally exhausting — but filled with moments of light that keep her going.
“It’s not a steady journey,” she admitted. “It’s a rollercoaster. I have to take each day as it comes.”
