#TUBESDAYTEN

This article shares Charlotte’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 Charlotte, and do not necessarily reflect those of Talking Tube Feeding.

⁠How are you tube fed?

I was tube-fed via a nasogastric (NG) feeding tube, that went up my nose, down my throat and into my tummy. I would have 2 pump feeds per day, as well as 2 gravity bolus feeds through an open syringe.

How long have you been tube fed?

I was tube-fed for exactly 12 months.

What do you wish people knew about tube feeding?

I wish people knew that tube-feeding isn’t a last resort. And although they are formally classified as ‘life-saving medical devices’, feeding tubes are also life-giving medical devices. Feeding tubes aren’t scary, or something to feel sad and sorry about - to be honest, it’s the complete opposite! I’d be more scared about where I’d be without my feeding tube. 

What do you want to achieve this year?

One thing I want to achieve this year is to change people’s outlook on tube-feeding. I feel the term ‘feeding tube’ is misunderstood by many people as a bad and harmful ‘danger zone’. But isn’t not, it’s just a different way of receiving nutrition, hydration & medication - that’s literally it. 

Tell us about a decision in your life that has empowered you.

A decision I have made in life that has empowered me is choosing to go back to school with an NG feeding tube. At first, I was absolutely petrified of the idea, but looking back now, I’m so glad I chose to go back. At first, I was stared at a lot - but overtime, my feeding tube sparked conversations of curiosity, and a lot of stigma surrounding tube-feeding was broken during those times. By the end of that school year, I left feeling confident, knowing that approximately 75% of my school knew that tube-feeding doesn’t hold you back. 

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

am a huge sucker for anything to do with musical theatre, singing & dancing! So I attend a performing arts school weekly, which has boosted my confidence immensely. I am also hugely passionate about SEND (Special Education Needs & Disability) advocacy, and sharing my own personal journey through my Instagram page ‘@audhd.fnd_andme’, which has allowed me to connect and relate with so many lovely families, as well as other people like myself! 

How do you celebrate the small wins in your tube feeding journey?

Every win, no matter how big or small, is celebrated in our house! Whether that be a trip to the toy shop, a new pair of trainers, or even something as small as a cuddle on the sofa. 

Who or what has supported you most in your tube feeding journey?

To be completely honest, the community I have built through Instagram with families of other tube-fed children that understand, has been more supportive than I could imagine. I also have to give full credit to my amazing mum, who always advocated for my right to nutrition, and still does so now! Additionally, I take my hat off to my team of SEND staff at school, who took the time & patience to learn how to tube-feed me earlier this year - their individual support never went unnoticed. 

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

Most definitely feeding tube support groups on Facebook. I also knew that I could pop a post on their asking for advice, and each time somebody would come back offering guidance. Small businesses, such as Tubie Cheeks, Cheeky tapes & Tilly’s tubes were also impeccable at providing accessories to make my feeding tube feel less scary! 

What’s one piece of advice you’d share with others who are tube fed?

One piece of advice I’d share with others who are tube fed is that you’re not alone, and you will most definitely find your people. Don’t make yourself feel like a failure if you or your child is tube-fed; you’re on your own path, and you/your child is thriving in their own little way. 

 

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!