‘Nil by mouth’. That was the indefinite medical instruction. Three words that wrote a future where my son, Arlo – just shy of five years old, at the time – would never swallow another bite of food or sip of drink. Not a nibble. Not a slurp. Not a lick.
It was an unexpected, screeching turn on our parenthood road – and it wasn’t our first with this kid. Arlo sustained a brain injury at birth and has profound physical disability. As he grew into his bright, cheeky self, he needed things I never could have fathomed featuring in our story – wheelchairs, communication aids and hoists. All of which we would welcome, in good time.
But this was a blow.
Arlo loved eating his spoon-fed, mashed up meals alongside his little sister and now, an x-ray had revealed it was no longer safe for him to do so. Arlo’s fifth birthday cake – chocolate, his favourite – was one of the last things to cross his lips before he had percutaneous endoscopic gastrostomy (PEG) surgery to place a feeding tube in his belly, a device somewhat resembling the air valve on a beach ball.
Breakfast, lunch and dinner became six bottles of ‘nutritionally complete’ formula, delivered by a feeding pump. Our cupboards filled with octopus-like ‘giving sets’, tube extensions and syringes. Our days filled with beeps, ‘occlusion alarms’ and, more alarmingly, Arlo’s near constant coughing, reflux and vomiting.
While the colour drained out of our boy, his medical team insisted we persevere with the prescribed formula. His intake was slowed to drip speed, which did nothing but tether him to his pump for most of the day. After Arlo’s second hospital admission with aspiration pneumonia, I got desperate, and turned to social media.
A single Facebook comment changed everything.
“Melanie, from one PEG mum to another, you’re not going to get the formula right. 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 us the confidence to try something that felt right. And it worked.
While Arlo’s spark reignited on his former diet of Weet-bix, bananas and occasional slices of birthday cake, I wondered: why the heck weren’t we connected with his new community straight off the bat?
There we were – desperate, drowning, thinking tube-feeding was the worst thing that ever happened to us – while millions of people around the world were living full, fun and often very ordinary lives while eating in this way.
For some, the nutritional formula was fine. Others, like Arlo, thrive on blended food. A lot of people have a bit of both. The point is, there is no single way to do this. And there’s a huge, global community of people and families who make tube-feeding work for what they want to do in life, be it bodybuilding (hey there, Pedro Relvas), lino-print making (looking at you, Kathy Lean) or watching Bluey.
As I dug deeper, I discovered that Arlo had joined what is possibly the most diverse group of people on the planet. Tube-feeding threads through almost every medical specialty, from premature babies to kids with neurological conditions and adults with chronic health challenges.
While the media uses feeding tubes to signify sickness or as a cautionary warning to quit smoking, in reality, the majority of people who tube-feed aren’t in hospital or palliative care. They’re in their homes or out and about, at school, in workplaces, travelling the world and, sometimes, at a Taylor Swift concert (three Eras tour shows was it, Steph Kelly?).
As is the case for my son, these lives often come with a heaped serve of challenges. But this isn’t the whole story of tube-feeding. And I wanted to tell it like it is.
A journalist by trade, I buddied up with a designer I’d previously worked with at a magazine and together, we made a coffee-table worthy publication filled with lived experience and advice from the tube-feeding community – the stuff I wish I could have seen before crash landing into this space with my son.
Today, we’re five years and five issues into The Blend, the world’s only lifestyle mag for those who rely on enteral and IV nutrition. And we’re being read by tens of thousands of people across the globe.
Tube-feeding is not the only health territory with a reputational problem and lack of uplifting resources. So, after the success of The Blend, under our new agency, Heart Out Media, we’ve launched a sister magazine, In Crowd, for the incontinence space.
Edited by disability advocate Anja Christoffersen, this new title speaks to a community you might be surprised to learn includes one in three of us. Design-wise, it sits unashamedly alongside Vogue and Marie Claire. Inside, it’s brimming with honest accounts of beautiful lives where poo and wee are not predictable characters.
This is the treatment these stories deserve. All the better if they’re accompanied by premium photography, painting a vastly different picture to a Google search.
As a growing network of consumers, healthcare professionals and companies rally behind us, Heart Out Media works across publications, podcasts and video content, capturing and celebrating what ‘lifestyle’ actually looks like for many of us.
And while Arlo continues to have his cake and eat it, too, I’m gifted with frequent reminders of why we do what we do. “My daughter is two and we got given a copy of The Blend,” a mother wrote to us recently. “She doesn’t see people like her in her books so has taken to flicking through your magazine instead. Thank you.”