Friends, it’s Feeding Tube Awareness Week. And there’s no better time for you to meet The Blend.
This global lifestyle magazine celebrates the millions of people and families who rely on tube-feeding. It offers a glimpse into the lives of those who are doing this thing and making it their own. Their stories lift the lid on this way of eating - and share a taste of just how creatively our most fundamental needs can be met.
For those who are unfamiliar, let me explain that ‘tube-feeding’ can mean getting your hydration and nutrition by way of a nasogastric (NG), gastrostomy (G), or jejunostomy (J) tube. Mouths are out of the equation. Meals are delivered via a tube that goes down your nose, or directly into your stomach or intestine.
Initially, I really struggled with the notion of my son eating in this way. As far as I knew, tubes doing the work of body parts meant sickness, sadness and decline. Feeding tubes were for cancer patients and people in palliative care, were they not? So when this notion became a non-negotiable for my cheerful son, I was a mess.
This wasn’t Arlo’s first medical intervention. He’d already gotten comfortable in wheelchairs and walkers. He’d found his way of talking without words, a wicked sense of humour and a knack for winning hearts. All of this came naturally to our boy who, at six months old, was diagnosed with cerebral palsy. But eating and drinking safely, so we discovered, did not.
Just before Arlo turned five, a modified barium swallow x-ray caught him silently aspirating on every bite of food and sip of water we were helping him take. A stern recommendation of “nil by mouth” saw Arlo’s gastrostomy procedure swiftly scheduled. After which, his regular diet of breakfast, lunch and dinner switched to six bottles of commercial formula - something that did not sit well with him.
Not long after getting his G-tube, Arlo suffered bad reflux which caused aspiration that was anything but silent. After his second hospital admission in as many weeks, I asked his medical team if we could try something I’d heard a little about - ‘blenderised feeds’, where real food is blended and syringed through a tube.
“Eventually,” said Arlo’s paediatrician, feeding specialist and dietitian in separate conversations. “But we need to get the formula right first.”
Things carried on in this fashion until I tapped into the online feeding-tube community. Actual people and families who are doing this thing and supporting one another in Facebook groups. Here is where a fellow parent said to me:
“Melanie, from one 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.”
That, right there, gave me the confidence to give this blended feeds thing a go. Mercifully, it worked - and has continued to for years. Arlo is flourishing on blended food, but I’m not here to trash-talk commercial formulas that work beautifully for countless people who are tube-fed. I am here to say that: if you are new to tube-feeding, there is a vast community here to help you.
The truth is, although we may be prescribed a certain approach, tube-feeding is different for everyone. Getting it right can take a bit of trial and error, a lot of trusting your gut and a little help from those who have been there and done it. Whether that be a parent travelling around Australia in a caravan with their tube-feeding kiddo in tow, a bodybuilder with a G-tube or a television presenter with an NG (all true stories, as you’ll read in The Blend).
Today, The Blend reaches tens of thousands of readers the world over. Now in its fifth year, its mission remains the same: to take a bit of the mystery and medicalisation away from this different - but no less worthy - way to thrive.
Melanie Dimmitt
@the_blend_mag
