Feeding Tube Awareness Week 2026: Winnie-Rae's journey

Winnie was born at just 27 weeks, weighing only 530g (1lb 2oz). She spent 204 days in hospital, facing countless battles, including five episodes of sepsis. From her very first day of life, Winnie relied on a feeding tube due to her prematurity.

Tube feeding has never been easy and it has never felt normal, especially as a first-time parent. This wasn’t the feeding journey we imagined. It’s something we’ve had to learn, accept, and face together, step by step. The thought of never being able to feed your child “normally” is terrifying, but you learn that love isn’t measured by how feeding looks.

Critical moment

At Christmas 2022, her very first Christmas, Winnie became critically unwell and required emergency surgery to form a stoma.

Restarting feeds afterwards was extremely difficult. We trialled multiple milks before finding one her body could tolerate and wouldn’t cause her stoma to prolapse. During her NICU stay, Winnie was fed using both gravity feeds and pump feeds, depending on what she could manage.

By February 2023, we were able to introduce bottle feeds, but sadly Winnie struggled to tolerate them and remained heavily dependent on her tube.

Tubes at home

In May 2023, Winnie was discharged home with both an NG (nasogastric) tube and oxygen, and our feeding journey continued beyond the hospital walls.

Winnie had her NG tube for a total of 909 days before transitioning to a MIC-KEY button (a special feeding tube that allows nutrition directly into the stomach). More recently, we have started a blended diet through her button. Although Winnie has a safe swallow, she aspirated milk into her lungs, making oral feeding unsafe.

For Winnie, her feeding tube is her source of nutrition, energy, and life. And despite everything, Winnie is happy, she is healthy, and that is all I could ever ask for.

Thanks to Ke’Anne for sharing Winnie’s feeding story..