#TUBESDAYTEN

This article shares Emma and Robin’s experience of tube feeding under their individual care plan given by a healthcare professional. Please don’t change a care plan without speaking to a dietitian. All views expressed belong to Emma and Robin, and do not necessarily reflect those of Talking Tube Feeding.

Can you tell us about your child’s tube feeding routine? 

Robin has 3 homemade blended diet meals in a day and 3 blended ‘puddings’. He attempts to eat these blended meals orally first. Sometimes he struggles and we are able to give the blended diet via his gastrostomytube. Robin has both a genetic condition and airways abnormality which has made feeding difficult and dangerous at times. He is able to eat purées orally now and is making good, steady progress. 

He also has two bottles of milk (via pump), one whilst he naps and one late at night once he’s asleep. He has water after each meal and all fluids are given via his gastrostomy due to an unsafe swallow. We also use the tube for all medications. Tube feeding enables us to make sure Robin is getting all the nutrients, medication and fluids he requires. 

How long has your child been tube fed? 

Robin has been tube fed for over 3 years, since he was 11 weeks old. His first few weeks were incredibly hard as his feeding issues were undiagnosed. By the time he got his NG tube at 11 weeks old he was very poorly. 

What do you wish more people understood about tube feeding? 

I wish more people understood that needing a feeding tube doesn’t always mean you can’t eat by mouth. Many tube-fed people, like my son Robin, can still eat - but often in a very limited and carefully managed way. For Robin, everything he eats has to be puréed, and his feeding tube is essential for giving him the fluids and calories he can’t get through food alone. Tube feeding is just one part of his overall care, his needs vary and change each day. 

What’s one thing you hope to achieve this year – for your child or for your family?  

Robin is working really hard towards holding a spoon and feeding himself. He has extreme sensory issues and finds this incredibly hard. We are working with occupational therapy to support Robin to develop this skill. 

Can you share a decision you’ve made as a carer that’s made you feel empowered?  

To totally follow Robin’s lead. If he needs it, he has it. Even if I might feel disheartened, sad or confused by the process. I try to put my own feelings aside and just follow his lead. 

Do you have any hobbies that help boost your mental health and wellbeing?  

I love walking and being outside! We’ve recently bought an off-road adaptive buggy which has opened up our access to lovely walks. 

How do you celebrate the small wins or milestones with your child?

Every single new skill or change we see is so exciting! Usually, I share them with family and friends who are also extremely supportive. Robin has gathered a rather large fan club in the last 3 years and sharing his achievements and “inchstones” is really lovely. Robin loves it when adults give him a clap, he has recently started to wobble his head, spin or flap in response. 

Who or what has supported you most throughout your child’s tube feeding journey? The tube feeding community that exists online is just wonderful. I have made many friends through social media, some who I suspect will now be friends for life. These friends are also parent carers of children with feeding tubes and being able to connect with them, ask questions, share advice and worries is invaluable. I’m really grateful to the other parents who share their experience and I’m always keen to share my own too 

What helps you feel connected to others in the tube feeding community?  

Solidarity and knowing I’m not alone on this journey. Hearing the stories, experiences, and tips from other parent carers - whether through online forums, support groups, or social media - reminds me that there’s a network of people who truly understand the challenges and triumphs that come with tube feeding. Sharing the small wins, exchanging practical advice, and simply being able to talk openly without having to explain everything helps me feel seen, supported, and part of something bigger. That sense of shared understanding is incredibly powerful. 

What’s one piece of advice you’d share with another parent or carer starting their tube feeding journey?

To be kind to yourself. This journey can feel overwhelming at first, and it’s okay not to have all the answers straight away. Tube feeding comes with a steep learning curve, but you will find your rhythm. Trust yourself, take things one step at a time, and don’t be afraid to ask for help. You’re doing something incredibly important for your child, and you’re not alone - there’s a whole community here to support you. Celebrate the small wins and give yourself credit for how much you’re learning and doing every day. 

 

If you have any questions or want to know more about tube feeding in general, drop us a message on Instagram @talkingtubefeeding or email us at talkingtubefeeding@uk.nestle.com, we’d love to hear from you!