Melanie Dimmitt is a busy woman who has numerous strings to her bow. She’s a freelance journalist, author, editor and broadcaster, but her most important role to date, is being a mum of two children, Arlo and Odette.
Her son Arlo was diagnosed with quadriplegic cerebral palsy when he was just six months old. Melanie and her partner were understandably fearful about what his, and their future would look like.
They, like many other parents of children with disability, desperately sought connection with others who had been through the trials and tribulations of raising a child with a disability.
While Melanie’s pathway into parenthood had taken an unexpected turn, the experiences on her journey of parenting a child with a disability inspired her to share her thoughts and experiences with other parents traversing the same fears and challenges.
So in 2019, she launched her debut book, Special: Antidotes to the obsessions that come with a child’s disability,
As if writing a book wasn’t enough for this busy mum, Melanie also hosts the NDIS Know-how podcast series that offers tips and tools to parents on how to successfully navigate the NDIS and get the most of their NDIS plan funding.
She has most recently created another disability podcast series called Tubie Talks that celebrates the lives of people and families who tube-feed.
In 2021, Melanie was introduced to the world of tube-feeding when Arlo had a gastrostomy tube inserted after an x-ray found that he was accidently inhaling small amounts of whenever he ate or drank. As a result, he needed to be tube-fed.
It was this personal experience of tube-feeding that led her to launch The Blend in 2022. The Blend is an annual lifestyle magazine designed to inform and inspire the tube-feeding community, especially ‘tubie newbies’ or people who are otherwise new to the world of tube-feeding.
Feeding Tube Awareness Week is celebrated nationally every February and aims to raise awareness about tube feeding and unite the community.
In recognition of Feeding Tube awareness Week 2024, Melanie shares her thoughts and personal insights with us on the fascinating world of tube-feeding.
Why is Feeding Tube Awareness Week so important?
Because many people aren’t aware of what feeding tubes are. They’re also not aware of the breadth and diversity of the many people and families who rely on tube-feeding. I certainly wasn’t before my son Arlo had his gastrostomy tube inserted. Something that, at the time, I thought was a tragedy.
Your average punter will likely only see a feeding tube attached to a sick-looking kid on a poster in a hospital. You might see a person tube-feeding as part of an ad from a charity fundraiser or, as we’ve watched on national television, a scary anti-smoking campaign.
Before we know better, feeding tubes are something we associate with sickness, suffering and palliative care, but this doesn’t paint the full picture of our diverse – and largely thriving – community.
What do you think is one of the greatest misconceptions people have about tube-feeding?
That it’s a tragedy (like I thought it was). While a feeding tube will usually come as a result of health challenges, it’s not the bad guy. Feeding tubes are the heroes of so many people’s stories. Would a lot of us in the feeding-tube community rather not need to tube-feed, or tube-feed our loved ones? Of course. But by golly are we grateful for these lifesaving devices.
What would you say to a parent or a person who is commencing their tube-feeding journey?
Find us! It might feel like you’re the only parent or person going through what can be a very tough lifestyle adjustment, but I promise, you’re in very good company. The online tube-feeding community is the most welcoming and helpful bunch I’ve ever encountered.
Knowing what you know now, is there any advice you would give yourself back when Arlo was a ‘tubie newbie’?
I wish I could tell myself what another parent, who’d been doing this thing for a while, told me on Facebook once we were a couple of months (and much, much vomiting) into Arlo’s tube-feeding journey. That mum’s name is Eron, and she said to me:
“Melanie, from one PEG mum to another, you’re not going to get the formula right. Don’t be scared to try blended. It doesn’t have to be hard. Take the food Arlo was eating before a tube, blend that up with liquid to a milkshake texture and syringe that through as a starting point. Unless he has specific dietary needs, it doesn’t have to be rocket science.”
Tube feeding is different for everyone. And getting it right can take a bit of trial and error and a lot of trusting your gut.
There are countless people all over the world, Arlo included, living full and healthy lives because of their feeding tube. And we need more awareness around this cohort.