“My Darling, I Wish I Could See This Little Face Every Day”: Jesy Nelson’s Heartbreaking Confession After Baby Ocean Pulled Out Her Feeding Tube Amid the SMA1 Battle

Jesy Nelson shares a heartbreaking confession about her daughter Ocean after the baby pulled out her feeding tube — a small moment, yet powerful enough to shatter her heart amid their battle with a devastating illness

Former Jesy Nelson has shared a deeply emotional moment from her family’s ongoing health battle, revealing that her baby daughter Ocean accidentally pulled out her feeding tube — a split second that left the star overwhelmed with heartbreak.

The 34-year-old singer, who welcomed premature twin daughters Ocean Jade and Story Monroe in May 2025 with her ex-fiancé Zion Foster, has been candid about their devastating diagnosis of Spinal Muscular Atrophy Type 1 (SMA1).

Taking to Instagram Stories on Thursday morning, Jesy posted a tender clip of Ocean smiling up at her, her tiny cheeks squeezed lovingly by her mum. But it was her caption that truly broke hearts.

“Ocean pulled out her feeding tube this morning. I forget what her little face looks like without it,” she wrote. “We really take for granted the little things. What I would give to see her little face like this everyday.”

For babies with SMA1 — a severe genetic neuromuscular condition that causes progressive muscle weakness — feeding tubes are essential due to difficulties with swallowing, sucking and breathing. Jesy admitted that seeing Ocean without the tube was both beautiful and painful, a reminder of how much their reality has changed.

A Mother Putting Everything on Hold

The emotional post comes just as Jesy released her documentary Life After Little Mix, in which she speaks openly about her twins’ diagnosis and her decision to leave the band in 2020.

Now, she says, music has taken a back seat.

Speaking on Heart FM’s Breakfast show with Amanda Holden and Jamie Theakston, Jesy made it clear where her priorities lie.

“Look listen I’d never say never to music, but for me, my girls are my main focus,” she said. “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. Because that’s going to determine their future.”

Jesy has been campaigning for the NHS to expand the standard newborn heel prick blood test to screen for SMA1. Her petition urging the government to fast-track funding for the £1 test has already surpassed 120,000 signatures. She has previously said that if Ocean and Story had been diagnosed earlier and started treatment sooner, “their legs could’ve been saved.”

“I Just Want to Be Their Mum”

In raw interviews with the Daily Mail, Jesy described caring for the twins as an “emotional rollercoaster.”

“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,” she admitted. “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.”

She heartbreakingly added: “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.”

Despite the grim prognosis that many babies with untreated SMA1 do not survive past the age of two, Jesy remains fiercely hopeful. Speaking on Great Company with Jamie Laing, she explained the brutal reality of the condition.

“So spinal muscular atrophy is a muscular wasting disease… 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.”

But she refuses to surrender to fear.

“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.”