Feeding Tube Awareness Week 2026: Emilia's superpower
'What's that?', I hear another child asking Emelia on the climbing frame at the playground. I can see they're pointing at the white wire/tube that they can see running from a backpack on her back to under her t-shirt. (I hold my breath for a moment.) After a slight stutter, she says "Hi, It's one of my extra bit super powers, it’s my feed that goes straight into my tummy (she lifts her t-shirt to show her mini button) while I still get to play. How cool is that? Shall we play together?!" She turns and heads to go down the slide beckoning the other child to follow.
Defying expectations
Born at 22+2 weeks, Emelia is seven now and every single day there's amazing moments like this when we get to see her do something we were told she'd never do (sit up, walk, talk) and more (raise awareness and acceptance of difference and disability).
As I'm writing this, she's just said "Mum, look!" I look up, she's got Nutella all around her mouth from ear to ear, all down her clean school t-shirt and the biggest happiest grin you can imagine! I'd given her the tiniest bit of Nutella on a teaspoon (it's lately become a treat for her).
We've waited so long to see that! It is a very new experience/acceptance/tolerance for Emelia. She is definitely still on her feeding journey and trying to establish oral feeding.
Waiting time
Emelia is currently waiting for surgery (it has been cancelled twice at the last minute) to close her tracheostomy site as it did not close on its own after decannulation. Although this is not life threatening, it is affecting her quality of life and negatively impacting phonation, swallowing, and cough physiology and presents functional, aesthetic and psychosocial challenges.
She desperately wants to be able to eat and enjoy food, but for now, is enjoying discovering little dips of Nutella and her crisps menu. Emelia has three enteral feeds a day on Compleat Paediatric feed to meet her nutritional needs made up of dehydrated chicken, oranges, peaches and vegetables – we try to optimise her window of feeling hungry to try food before giving her a feed.
Tasting menu
Emelia struggles to be around when it’s mealtimes and the sole focus/activity is eating. We offer her tasters at every meal, and just meet her where she's at that day. If she shows interest, we rock and roll with it. Sometimes she will touch, sometimes smell, sometimes lick, sometimes bite and spit out, sometimes chew, sometimes gag and cough and can't tolerate and sometimes it's all a no and she struggles to be at the table in the kitchen (on those days, she has a boogie in the kitchen instead). With this approach she has built a menu of foods she finds safe, mainly crisps and, on occasion, tiny bits of red pepper or scrambled egg.
We still go to restaurants, Emelia still gets to choose her meal, not just have a taster off our choice of food. She likes to join in when we all, for example, have an ice cream at the beach. She'll get a whole one to herself with all the toppings, then often have the tiniest lick and a cough and splutter and say "I've had enough now thanks", and her little brother’s eyes light up in hope he might get it!
Back to the beginning
Emelia is tube fed because she was an extreme prem/micro prem weighing 450g (less than 1lb) born at 22 wks+2 back in August 2018 and experienced many challenges. Emelia's full neonatal story is long, complex and ongoing: there’s no real way to summarise what happened next....but...we would live with Emelia in a hospital for the next 18 months while she underwent three big surgeries.
Our daughter had laser surgery for ROP (Retinopathy of Prematurity) to save her sight, Nissens Fundoplication and gastrostomy forming for mini button to treat GORD (Gastro-oesophageal Reflux Disease) and formation of a tracheostomy to be trachevented with oxygen 24/7. There were also various readmissions to PICU and HDU due to infection and not responding to treatment.
As Emelia became more mobile and didn't want to stay still for the hour it takes her feed to be given, we had fun with feed bags and often had to get creative to get it to work and fit the pump and the feed bottle. Her latest one is the Elvis Stitch one!
Dr Mum & Dr Dad
We became medical mum and dad and immersed ourselves in what we had to learn, understand and train in. As hard as the journey is, we have met some incredible families and learnt some powerful lessons in strength and resilience and supporting each other.
Tube feeding is part of the norm for our family, but different to others and it is possible to 'look beyond the tubes and see the incredible human being', as a neonatal nurse once said to us.
Thanks to Marie for sharing Emelia’s story