Jesy Nelson says her twins are ‘the bravest girls’ as they have tubes
Jesy Nelson is in a “dream” after her daughters underwent an operation to have their nasogastric feeding tubes removed.
The Little Mix star’s daughters, Ocean Jade and Story Monroe, were diagnosed with spinal muscular atrophy (SMA), a rare condition that causes muscle weakness. It required Nelson’s daughters to be given feeding support as part of their early medical care, but they had their tubes removed on Friday.
Following the surgery Nelson shared a series of photos of her daughters in hospital beds, captioning one post: “I got their face back feels like a dream.” Another showed her twins sleeping in beds next to each other, with Nelson also posting a photo holding a hair clip that read “good things are coming”.
They twins been getting specialist care ever since, but it it’s not known if they will ever walk due to irreversible nerve damage.
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Jesy says she’s looking forward to having cuddles with her girls again(Image: Instagram)
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Her baby girls will have their feeding tubes removed today (Image: Instagram)
However, today the 35-year-old will get to see her daughters’ dimples again when they have the plasters removed from their faces that were needed to keep the feeding tubes in place.
Posting a video on Instagram, Jesy told her 9.5 million followers: “Today is the big day. We’re taking these plasters off aren’t we? No more tuby for you in your face. They’re going down soon. The bravest girls in all of the world.
“Today is the last day of my baby girls having their tubes on their faces. As terrified as I am about them having their operation, I cannot wait to finally see their faces again and see their little dimples that are always hidden under these plasters.
“I’ve honestly forgotten what it feels like to cuddle them and not worry about pulling their tube out of their nose or plasters off their face. It really is the littlest things we take for granted as parents.”
According to the NHS, SMA can cause problems including muscle weakness, difficulty sitting up, crawling or walking, problems breathing or swallowing and bone and joint issues. Jesy’s twins have Type 1 SMA, which begins in babies under six months old.
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Jesy says ‘I got their face back!’ after twins’ surgery(Image: Jesy Nelson /Instagram)
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The babies no longer have tubes attached to their face(Image: Jesy Nelson /Instagram)
Back in January, Jesy revealed the heartbreaking news that her twins – who were born prematurely at 31 weeks – would be disabled as they have the most severe form of the disease, which kills muscles in the body over time.
Having to stop herself from crying, she said: “I am grieving a life I thought I was going to have with my children.”
She told how her life has been turned upside down and she is now acting as a nurse to her girls by “putting them on breathing machines and doing stuff that no mother should have to do with their child.”
Jesy added: “They will be disabled. The best thing we can do right now is get them treatment and just hope for the best.”
Since the twins’ diagnosis, Jesy – who shares the twins with with her former partner Zion Foster – had been demanding the condition is added to the newborn blood spot screening test, as early treatment can help avoid some of its most devastating effects.
The Department of Health announced in July that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year, following a passionate campaign by the X Factor star and the Mirror. Hundreds of thousands of babies will be screened as part of the simple, heel-prick blood test shortly after birth.