Jesy Nelson has admitted feeling 'terrified' as her twin daughters prepare for an operation amid their ongoing battle with spinal muscular atrophy (SMA) Type 1, a rare genetic condition causing progressive muscle weakness.
Operation details
The former Little Mix star, who shares 15-month-old Ocean Jade and Story Monoroe with ex-fiance Zion Foster, revealed on Thursday (August 6) that the babies would have their nasogastric (NG) tubes removed on Friday (August 7). NG tubes deliver nutrients, fluids, and medications through the nose and into the stomach when swallowing is difficult.
Sharing a picture of her girls on Instagram, Jesy wrote: "Today is the last day of my baby girls having their ng tubes on their faces, as terrified as I am about them having their operation tomorrow, I cannot wait to finally see their faces again and see their little dimples that are always hidden under these plasters."
She added: "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 faces. It really is the littlest things we take for granted as parents."
Health struggles and screening campaign
Doctors recently warned Jesy that Ocean and Story were not responding to treatment as hoped during a three-month review at Great Ormond Street's Children’s Hospital. Jesy told The Sun: "Unfortunately, some of the numbers have gone down. We had a long discussion and there’s a possibility they may have to go back on treatment, which is just heartbreaking. I constantly battle between manifesting they’re going to defy the odds and trying to come to accept that that may not happen."
She added: "It’s a really weird position to be in because you you think ‘well, if that doesn’t happen, am I just going to feel heartbroken for the rest of my life?’ Then you worry, if I accept it, am I also manifesting that?"
Since the diagnosis in January, Jesy has campaigned for changes to UK newborn screening laws. The Department of Health confirmed last month that a national screening programme for SMA will roll out across England as part of an evaluation from the end of this year, enabling hundreds of thousands of babies to be screened via a simple heel prick blood test shortly after birth.
