The Blend Mag - Issue 4

Image: Debi Brett Photography

Tube feeding accessories to support all ages

tubiefun.com.au tubiefun

@tubiefunau

@tubie.fun

HEALTH EQUIPMENT & CONSUMABLE SUPPLIES AUSTRALIA

SERVICE AS IT SHOULD BE Founded in 2019, HECSA’s guiding principle is to bring back old-fashioned service to the medical consumables industry.

Every decision we make is focused on solutions that provide better outcomes for you. Improving your comfort and health is our business.

www.hecsa.com.au 1300 087 786

28 Proprietary Street, Tingalpa QLD 4173 / Unit 1, 1-3 Civil Road, Garbutt QLD 4814

Brisbane team

• Continence Townsville team

• Skin Care • Wound Care • Nutrition • Respiratory • PPE • Janitorial • Hospitality

The Blend Issue Four was created in partnership with...

HEALTH EQUIPMENT & CONSUMABLE SUPPLIES AUSTRALIA

Paediatric Feeding I N T E R N A T I O N A L

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Disclaimer All information, advice and content contained within this publication is provided for general information purposes only, and does not constitute medical, dietitian, psychological or other professional advice. All care is taken in the preparation of the information included in this publication. The publisher does not make any representations or give any warranties about its accuracy, reliability, completeness or suitability for any particular purpose.

To the extent permissible by law, the publisher will not be liable for any expenses, losses, damages (including indirect or consequential damages) or costs that might be incurred as a result of the information being inaccurate or incomplete in any way and for any reason or your reliance on the information, advice or content contained within this publication.

Credits The Blend is curated, written and edited by Melanie Dimmitt and designed by Edith Olsen. The cover photo is by Samantha Allyson Photography.

Acknowledgement of Country The Blend creators acknowledge the Aboriginal and Torres Strait Islander peoples of Australia. We acknowledge the Gundungurra, Tharawal and Garigal peoples, the traditional custodians of the lands on which The Blend was made.

We pay our respects to ancestors and Elders past, present and emerging.

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52

the blend. contents 18

32

Editor’s letter

Family stories

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32

Featured contributors

SOUL SISTERS

Tameka Simmons is bringing all of her daughters to the table.

38

THE SIBLING BOND

It’s time these supporting acts got their own headline.

52

EVERYDAY MIRACLES

Worldwide awareness, anyone? In the Willardson household, tube-feeding goes viral.

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Personal accounts 68

CURATED CARE

A tale of two self-advocates who won’t settle for stock-standard support.

74

LIMITLESS

Garrett Taira defied all the odds and came back dancing.

80

MAKING CHANGE

Shaping legislation and advising big

68

brands are all in a day’s work for Celia Chartres-Aris.

86

FLYING HIGH

Introducing tube-feeding’s biggest cheerleader, Sutton Short.

Professional perspectives 94

THE G-WORD

80

Got a granulation tissue issue? Clinical

86

educator Robyn Wortel has you covered.

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ARFID EXPLAINER

Dr Tessa Taylor spells out and explores this common condition.

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DREAM TEAM

We meet a fantasy league of paediatric feeding specialists.

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LET’S TALK LINGO

A lesson in tube-feeding language with two stomal nurses.

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62 Features 48

WINNING FORMULA

It could be blended whole food, a nourishing supplement or a bit of both.

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PUSH IT

There’s more than one way to wield a syringe.

104

THE BUSINESS OF BLENDS Behind the scenes of three game-changing startups.

Recipes

114 Breakfast smoothie 116 Chicken broth

126

118 Enchiladas

TUBIE PICNIC

A deliciously fun affair.

120 Roast cauliflower and chickpeas 122 Chicken laksa 124 Pork stir fry

116

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Directory 134 A bundle of go-to products.

126

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A message from the editor, Melanie Dimmitt PHOTOGRAPHY // ABBIE MELLE

And this time around, The Blend is especially irresistible.

Issue Four launches in tandem

A

and hearts for this issue (pg 52).

We also spoke with award-winning adviser, lobbyist and policy designer

with our new digital destination –

Celia Chartres-Aris, who relies on

theblendmag.com – where you’ll

total parenteral nutrition (pg 80),

find all of the stories, interviews and

and a nasogastric-tube-touting

recipes from our pages and, I hope,

youngster changing the face of

many more. You might also notice

cheerleading (pg 86).

that our magazine has had a glowup, with a more editorial feel.

Our community is a formidable, global force led by innovators like

None of this would have been

the ones you’ll find on page 104,

sure there’d be

possible were it not for our creative

in our feature on ‘The Business of

another issue of

director, Edith Olsen. Ludicrously

Blends’. Here, three parents of tube-

The Blend. Not for

talented, cool-under-pressure Edie

fed kids, all leading blended enteral-

a lack of love, but

has made The Blend with me from

food startups, echo a determination

because squeezing

day dot and, once again, has crafted

to empower tube-feeding people,

its production in

a thing of beauty. Thank you, Edie.

families and professionals from their

confession, I wasn’t

around day jobs, child-rearing and

While we’re bringing co-stars

widespread corners of the world.

hand-washing a thousand-odd syringes

centre stage, this issue features

each day is, in short, a lot.

a celebration of siblings (pg 38)

our incredible stories. And thank

And yet, here we are.

including teenage sisters, Opal and

you to our partners, supporters,

Here’s to another year of sharing

Iris Shipley. To borrow some words

contributors and you, dear readers,

of Eat, Pray, Love, talks about engaging

from Iris, who has supported Opal

for making it possible to continue

with a creative side-hustle as you would

through her tube-feeding journey:

this passionate affair.

an extramarital affair. No, you don’t have

“I think a lot of siblings feel like

time for it. It’s not convenient and can

sidekicks sometimes. And I think the

be an absolute head-f**k to maintain.

truth is that we’re all superheroes.”

But you keep that flame alive because,

Our cover stars, the social-media

Elizabeth Gilbert, the bestselling author

as Elizabeth says, you’re hot for it. You’re

darlings that are the Willardson

obsessed. You can’t get enough.

family, generously opened their doors

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Mel xx

theblendmag.com @the_blend_mag

Debi Brett Photographer, ‘Body Talk’, pg 22, ‘The Sibling Bond’, pg 38, ‘Push It’, pg 62, and ‘Curated Care’, pg 66 For those who are tube-fed or have loved ones in the tubie community, it’s a deeply personal journey that benefits from greater awareness and support. I strive to capture the unique resilience of the tube-fed community alongside the joy and fun of everyday life.

Some of the creatives behind The Blend Issue Four share why they love creating content around tube-feeding.

Juliette McAleer Writer, ‘Body Talk’, page 22 Media representation of tube-fed folk was pretty much non-existent when I got my tube. This is why I am so committed to telling my story whenever I get the chance. I know it is only one of many tubie stories, but if we all raise our unique voices to educate the community about tube feeding – including both the

Tameka Simmons Writer, ‘Soul Sisters’, page 32

more inclusive for those of us already living with tubes. It might also take the fear away for those facing the prospect of tube placement in the future.

to me as a mum and advocate because it sheds light on the

Our cover stars, the

realities, challenges and triumphs

Willardson family,

of this journey. I hope to normalise

are photographed

tube-feeding, break down stigma

by Samantha Allyson

and empower other families

Photography in their

navigating similar paths.

beautiful home in

about tube-feeding is essential

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lives – I am hoping the world will become

THE BLEND ISSUE FOUR COVER PHOTO

Creating and sharing content

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struggles and possibilities of tube-fuelled

Boise, Idaho.

Debi Brett: Amber Carlyn Photography

Featured Contributors

Children’s Nursing Queensland

Does your tubie require....

Tube changes at home Support to attend school or childcare safely Regional or remote telehealth support Assessment and advocacy for funding and consumables Tube size review for measurements Support with skin issues Contact the tube nurse specialists at Children’s Nursing Queensland to find out more!

admin@cnqld.com.au www.cnqld.com.au 0438 649 309

POWERED BY //

Body Talk FEATURE

In a culture obsessed with appearances, a rising number of us are feeling uncomfortable in our own skin. But what if that skin happens to be flaunting a feeding tube?

O

ur more

ARTWORK // KATHRYN LEAN

star uttered a universal truth.

Within this culture, in the enteral

Image is powerful. It has an

feeding community, research** tells

readers might

enormous impact on how we

us that people with feeding tubes

remember

perceive and engage with people,

can be “less satisfied with their body

when, in 1989,

brands and, in the context of our own

image, reported lower self-esteem

Andre Agassi

bodies, how we feel about ourselves.

and poorer quality of life”. But

immortalised

In the decades since Agassi’s

feelings, as we know, are fluid.

seasoned

Here, three people explore some of

the line “image is everything” in an

line, cameras have made their way

ad campaign for Canon cameras.

into smartphones, social media has

the thoughts and emotions they’ve

He was wearing a lion-mane-

run wild and rates of body image

experienced around their tube-

style mullet wig at the time but,

dissatisfaction have increased

fed bodies – and how these have

nevertheless, the then-rising tennis

worldwide*.

changed over time. >>

* Body Image Distress and Its Associations From an International Sample of Men and Women Across the Adult Life Span: Web-Based Survey Study. JMIR Formative Research, November 2021. Accessed via: ncbi.nlm.nih.gov/pmc/articles/PMC8603168 ** Nutritional status, perceived body image and eating behaviours in adults with cystic fibrosis. The American Journal of Clinical Nutrition, February 2007. Accessed via: pubmed.ncbi.nlm.nih.gov/17007968

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While representation for people living with medical devices like feeding tubes has come such a long way, I feel like there’s not enough in the young adult space. I hadn’t seen anyone with a feeding tube and good quality of life. I couldn’t imagine having any kind of life with this piece of plastic, let alone one that was full or worthwhile.

I hated being looked at with pity after trying so hard to put together an outfit I felt good in. I’ve never been too bothered by staring because I kinda get that, but the pity is crushing when

Elli Kilpatrick

you’re just out trying to dance with

23, disability support worker, PERTH, WESTERN AUSTRALIA

friends or enjoy the beach.

I’d love to say there was a particular mindset that changed everything overnight but honestly, for me, it was time. I hated my PEG-J and went to great lengths to hide

I remember quite distinctly after

that, so long as this tube was only

and ignore it as much as I could.

having my first NG placed, thinking

temporary, it was fine.

I hit a point, though, where I was so

to myself that I would rather die of

After that I had a few years without

completely exhausted and really over

whatever was wrong with me than

tubes and couldn’t imagine going

hating myself so much. Then one

have a permanent feeding tube.

back there, but then my health took

night, in the bathrooms at a gig, my

I must have been about 14 – which I

a big dive. I found myself with an NG

best friend, Angie, said to me: “You’re

don’t think is the easiest time in life for

again, at 20, and remember feeling

gonna make feeding tubes look so

anyone figuring out identity and body

so lost. Pretty soon after this, I got

hot. If anyone can, it’s you.”

image – and I was already the “sick

my PEG-J. A permanent tube made

kid” at school. But I assured myself

things very real.

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That shifted something for me. I’d had plenty of people tell me they

Q&A

thought I was brave or that I inspired them but that didn’t translate at all to how I felt about myself – or wanted to feel about myself. Not once had I heard anyone talk about tube-feeding as fun, hot, or anything positive at all, so it hadn’t even occurred to me to embrace and own it.

Angie, thanks for the bathroom

One night, in the bathrooms at a gig, my best friend, Angie, said to me: “You’re gonna make feeding tubes look so hot. If anyone can, it’s you.”

That shifted something for me. after significant improvement

pep talk. It kinda changed my life.

from a gastric electrical stimulator,

Pilates and running also played a

which has been a really interesting

big part in me feeling good, strong

adjustment. To my surprise, I miss it a

and confident in my body again.

little. It took a long time, but I’d come

In hindsight, I don’t think I’d feel nearly

to be incredibly proud of it and loved

as positively about my body, or as

the quality of life I had because of it.

confident as I do now, if it weren’t for tube-feeding.

It took years to finally get a

If I could give one piece of advice to people who are new to this experience, it would be that, honestly,

diagnosis of gastroparesis, likely

I wish someone had told me I was

resulting from my Ehlers-Danlos

allowed to hate it. That I didn’t have to

syndrome. Jejunal feeds – and total

feel inspiring or brave.

parenteral nutrition (TPN) – absolutely

It’s okay if, right now, it’s just hard.

saved my life and I feel immensely

It will get easier, but you don’t have to

grateful for the opportunities I have

be a constant beacon of positivity. I’d

because of tube feeding.

also say though that your life can still

I was actually fortunate enough

be exciting and full – not just despite,

to have my PEG-J removed recently,

but likely because of, tube-feeding. >>

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Juliette McAleer

45, mother and multisport athlete, public speaker and PhD candidate, FRASER COAST, QUEENSLAND cat was kicked out of my room at night because he could no longer sleep on my tummy.

my small bowel and stomach.

I left hospital tube-free, determined I would not ‘admit defeat’. I tried my

I worried about going to work

best to eat what I could but, without

with a visible NG across my face,

a feeding tube and with a diagnosis

thinking it might impact upon others’

of short bowel syndrome – intestinal

perceptions of my capabilities,

failure, I would have faced a life of

I was initially very apprehensive

functioning or professionalism.

pain and chronic malnutrition.

about the idea of having a feeding

I worried that the dysfunctional

tube. I worried about a lot of things.

relationship I already had with food

temporary and, even though it was

Many of them seem silly or superficial

and eating might be amplified once

more visible to everyone else, I think

– especially those relating to body

a tube was placed. Spoiler alert: It did!

I coped better with it from a body-

image – but I want others to know it is

I was already struggling with

Having an NG placed felt

image perspective because it could

normal and okay to worry about both

incorporating my life-long illness and

be pulled out without leaving a trace.

‘big’ and ‘little’ things when facing

altered anatomy into my sense of

Once my MIC-KEY button was placed,

life-altering decisions, even if these

identity and self, and adding a tube

the reality of a probable lifetime of

worries are not entirely grounded in

on top of this felt overwhelming to

tube-feeding became more salient

fact or reality. Which is the nature of

me, at the time. This is what I think

for me.

worries, right?

clinicians and those around us often

As a triathlete, initially, I would

I worried about pain and

don’t fully appreciate. By the time we

wear my t-shirt down over my tube

discomfort. I worried about how

are at a point of acquiring a feeding

when running, but I found it was far

difficult it might be for me to adjust

tube, all of us have been through

more comfortable to run with my

to the logistics and mechanics and

major health struggles that have led

shirt tucked up under my sports bra

routines of tube feeding. I worried

us to this point.

or to simply wear a crop top. For a

about the social implications and

I started on TPN during a six-month

while, I was very self-conscious about

how it might impact upon my

hospital stay, after a sudden medical

the fact that people would see the

children and family, and even my

emergency ended in four emergency

massive scar up the middle of my

pets. My dog’s enthusiastic greetings

surgeries, a chopper flight from

tummy, my stolen belly button and

would have to be tempered so that

my regional home town to a larger

the MIC-KEY button sticking out of

she didn’t jump on the tube and my

hospital in the city, and losing most of

my guts.

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POWERED BY //

It’s not an objectively pretty sight and I worried about subjecting

used to land me in hospital regularly.

When they ran the tests, my bloods

others to it. But slowly, I have come

were perfect. I think I was prouder

to realise that most people don’t

of this result than I was of running a

actually care what you look like. And

marathon!

without my tube, there is no way I

My tube has helped me gain an

could have successfully crossed the

appreciation for what my body is

finish lines of four half-marathons,

capable of with the right nutrition.

Tour de Brisbane, four triathlons and

As someone who has struggled

a marathon last year.

with an eating disorder post-tube

When I crossed the finish line of

placement, my tube-fuelled athletic

the Gold Coast Marathon, wearing

achievements have also been integral

my specially designed tube-feeding

in helping me to find and embrace

running vest with my pump attached

strength and health, rather than an

to my button, the physicians at the

obsession with control and becoming

medical tent immediately cannulated

the smallest version of myself.

me to test my blood for the nutritional and electrolyte abnormalities that

Early on, one of the things that helped me feel more confident in

My tube has helped me gain an appreciation for what my body is capable of with the right nutrition.

mending service to have large buttonholes sewn into the sides to fit my extension and tubing through, or to unpick parts of the seams to accommodate the tube.

These seemingly small things made such a difference to my mindset. I think it was a way

myself was to try and personalise

of asserting my own style and

the experience of tube-feeding with

personality over what felt like a very

the help of companies like Tubie Fun

clinical and medical thing.

and a few Etsy sellers who make cute

Since getting my tube, I’ve heard

accessories for tubies. When I first got

stories of tube-fed people out there

my tube, one of the things I focused

living awesome lives – as parents,

on was choosing a matching tubie

grandparents, artists, bodybuilders,

pad, clip and port cover set to go with

athletes, musicians, academics and

my work outfits each day.

so many other things. Every one of

I love long, flowing dresses but,

these lives helps, by example, to

unless they have buttons down

challenge the “tragedy” narrative so

the front, they can make it tricky

often associated with tube-feeding

to manage tube-feeding. One of

and to highlight what properly

the best things I did for myself was

nourished bodies can do and achieve,

to take my dresses to a clothing

rather than what they look like. >>

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Your life isn’t over, this button helps you have a life and it gives you some freedom back.

And to those who are new to this experience, I’d say: Your life isn’t over, this button helps you have a life and it gives you some freedom back.

It is scary at first, but then you get over it. And if your friends are anything

Lewis Railton

like mine, they’ll be surprisingly cool this is the way I eat. And recently, they’ve really had my back.

My mum was asked to sign a form saying I’d be tube-fed with support at school, separately from my peers, but could bring along one friend “for

I have a feeding tube because I had

questions. I just want to hang with my

mental moral support”. My mum and

a stroke, when I was three years old,

friends.

I weren’t having a bar of this. Because I only have use of one hand – a

that severely impacted my eating.

That said, I’ve been in a photo

I’ve had my permanent low-profile

shoot with my shirt off. It was with

side-effect of my stroke – I mastered

MIC-KEY button since I was nine and

other tube-fed kids and adults

tube-feeding myself, independently,

while it hasn’t really impacted my

including Pedro Relvas, who’s a

with my strong hand.

confidence or the way I feel about my

fitness coach and bodybuilder. In the

body, I’m conscious of when I want to

company of other tubies, it felt right

during breaks at school in the

show – and not show – my feeding

to bare all – although I might invest in

green space, with no PPE and no

tube to the world.

I now feed myself with my friends

a spray tan and some tattoos before

sterilisation. And you know what?

Recently I’ve decided that if I’m at

going shirtless next to Pedro again!

I haven’t died yet!

the beach, I’m going to be wearing

When I first got my G-tube, I was

a rashie. I don't really want to show

told this would mean being hooked

my stoma off to everybody. Only my

up to a pump 24 hours a day and not

family and friends get the privilege

eating anything orally, but this hasn’t

of seeing my naked torso. Because

been the case. Having a feeding

some people haven’t seen a button

tube hasn’t stopped me from doing

before it can invite stares and

anything. In fact, it's the opposite.

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This article was made in partnership with Avanos. For easily digestible information about tube-feeding at any age and any stage, visit TubeFed by Avanos at tubefed.com.au.

Image: Debi Brett Photography

about it. To them, I’m just Lewis – and

16, high-school student, BRISBANE, QUEENSLAND

READ US ONLINE

t heblendmag.c om

“One thing this journey has taught me is the importance of being adaptable.”

Tameka Simmons

Family Stories

Image: Jason McKinney

Soul FAMILY STORIES

Sisters Born without eyes and with several other challenges, Evely Diaz was always going to have an extraordinary story. Her mother, South Carolina singer and not-for-profit founder Tameka Simmons – alongside Evely’s sisters, Luna and Skye – shares how tube-feeding plays a supporting role for their family.

WORDS // TAMEKA SIMMONS PHOTOGRAPHY // JASON MCKINNEY

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Q&A

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When the G-tube was placed again,

real ingredients that I felt good about

it hit me hard. There was a lot of grief

feeding her, knowing it would contribute

and overwhelming feelings because

to her healing and growth.

breastfeeding gave me confidence she was getting what she needed. As

Tube-feeding was incredibly

she grew, finding the right nutrition for

overwhelming at first. And messy, too!

Evely was also incredibly challenging.

I remember feeling so anxious and

The standard commercial formulas

sometimes I would even hear phantom

Evely got her feeding tube at three

recommended by hospitals didn’t

beeps from the feeding pump. That

months old. It was during what ended

align with our family’s lifestyle or

feeling still comes back occasionally,

up being a 30-day hospital stay

values. It felt unsettling to feed her

but once I found reliable meal options

battling heart failure and, initially, the G-tube was recommended to give her an opportunity to rest and heal from multiple life-saving heart procedures.

Her heart wasn’t well at all – and something as natural as breastfeeding was such hard work for her during that time. The tube allowed her to get the necessary nutrition and hydration without exerting herself,

Sharing meals is an important part of our family life. And we make sure Evely is always a part of it, whether through her specialised feeding routine or by including her in the mealtime atmosphere.

which was crucial for her recovery and overall health.

something I wouldn’t choose for my

that I felt good about feeding Evely,

I was just grateful and excited for

other children. So I started blending

things started to get a lot easier.

any intervention that would allow Evely

meals for her myself, which was both

to come home.

expensive and time-consuming.

At first, I saw the G-tube as a

Then, during a late-night Google

Over time, managing her feeding schedule and ensuring she gets the hydration she needs has become

temporary measure to give her heart

session, I discovered Real Food

second nature to me. I’ve gotten so

the opportunity to rest, expecting she

Blends. This was a game-changer

used to it that I rarely need alarms to

would eventually resume nursing and

– a whole-food option made with

remind me anymore. >>

start solid foods months later. Evely progressed well with oral feeding, leading to the removal of her G-tube button. However, shortly afterward, she began experiencing seizures and regressed in her skills.

Evely was diagnosed with a rare form of epilepsy and other conditions that made oral feeding not only challenging, but unsafe.

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FAMILY STORIES

I’ve connected with a supportive community. Families navigating similar journeys who we’ve met through our family’s not-for-profit, Through Evely’s Eyes, which supports children with rare medical conditions.

The best piece of tube-feeding advice I’ve received from fellow parents is to trust my instincts and advocate fiercely for what works best for Evely. Every child is unique and finding the right nutrition is a journey that requires patience and persistence.

Sharing meals is an important part of our family life. And we make sure Evely is always a part of it, whether through her specialised feeding routine or by including her in the mealtime atmosphere.

Evely’s sisters have been incredibly involved and supportive in her tubefeeding journey. Luna and Skye have grown up knowing this as a normal part of our family’s routine. Luna, being so young when Evely became a G-tube user, doesn’t remember a time before it, while Skye was born into this experience. They both show genuine interest and love helping Evely

5 MINS

Can you tell us about a time where things got messy with

WITH EVELY’S SISTERS, LUNA AND SKYE

Evely’s tube-feed?

Why does your sister Evely have

tube out while she was eating,

a feeding tube?

and food went everywhere! It

Luna: She has diagnoses that

was kind of funny, but also really

make it hard for her to swallow

messy.

Luna: One time, Evely accidentally pulled her feeding

with her tube feeds. It warms my heart to

food and drink like we do. Her

see their natural empathy and care for

feeding tube helps her get what

their sister.

What advice do you have for

she needs.

other siblings of someone who

One thing this journey has taught me

What’s your favourite thing

is the importance of being adaptable.

My primary hope is for Evely to reach her

about Evely’s feeding tube?

tube-feeds?

Luna: I would tell them it’s okay to ask questions if you don’t

Skye: My favourite thing is

understand something about

helping to prime her food. It’s

I’m prepared to support her in whatever

the tube. And always be gentle

fun to watch it go through the

way she needs, whether that involves

around the tube so it doesn’t get

tube. It looks like the food is on a

continuing with tube-feeding, transitioning

pulled or hurt them.

rollercoaster!

Skye: I would say it’s nice to help

full potential, whatever that may look like.

to oral feeds if possible, or exploring other options. My goal is to ensure she has the best nutrition and support to thrive in every aspect of her life.

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out when you can, like priming @thediazgirls @tamekadiaz

the tube, but also to just play and have fun together.

‘Our kids come as they are. Now it’s up to us to get with the program.’

Melanie Dimmitt, Special: Antidotes to the obsessions that come with a child’s disability.

Available to purchase online at all good booksellers.

The FAMILY STORIES

Sibling Bond Feeding tubes can make brothers and sisters all the more tight, so we’re told. It’s time these special relationships – in all their rivalry, fun and fierce love – got our full attention.

INTERVIEWS // MELANIE DIMMITT

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I

ris and Opal Shipley are

Opal and Iris, while you two were

the finishing-each-other’s-

growing up, what did family meals

sentences kind of sisters. At 18

look like?

and 16 years old, respectively,

Opal: Our mum is a huge foodie. She

the duo’s banter doesn’t miss

has [inflammatory bowel disease]

a beat – even when speaking

ulcerative colitis, so she has a lot of

from their separate cities

gastrointestinal (GI) issues and has

in Ohio. Iris lives in Cincinnati, where

always been really aware of what

she’s studying acting, while Opal

she feeds us. Every meal was like

is in their hometown of Columbus,

a plethora of nutrition. She loved

applying to colleges with her heart set

– and still loves – to cook, so we

on medical school.

would have these elaborate dinners.

Recent years have inspired

We have a table on both our front

Opal’s career aspirations. In early

porch and on our back deck and we

2020, sudden and serious illness

would sit around as a family, eating

saw her spending months in

and talking. It was a huge point of

hospital, requiring years of nasal

connection.

tubes and, eventually, a surgically

Iris: Yeah, eating together was

placed gastrojejunostomy (GJ) and

definitely the social hour of the day.

gastrostomy (G) tube.

We all do very different things. Our

The whole Shipley family –

40

the blend.

youngest sister is an athlete. Opal

including Iris and their younger sister,

and I were always doing theatre

now-14-year-old June – was shaken

things and our parents both work

by Opal’s rapidly declining health.

full-time jobs, so being able to have

But even in the darkest of times, they

that moment we all shared was super

made moments of light. Sometimes,

important. And it got really difficult

in ways that only a sibling could.

after everything changed.

POWERED BY //

Iris: I think one major thing that

While this was all happening, were

shifted was, before all of this

you being honest with each other

happened, we would do this thing at

about how you felt?

When did things start changing?

dinner called ‘best and worst’. Each of

Opal: Honestly, no. When I first got

Opal: My very first issues popped up

us would say the best part of our day

sick it was peak Covid, so I couldn’t

when Covid started, in March 2020.

and the worst part of our day. And

see any of my friends, I was dying

I have something called

once Opal became sick,

and I was a tween. Lots of things were

rumination syndrome,

we would all have different

pitted against me.

which is a type of

bests, but the worsts were

Iris: It sounds like the beginning of a

regurgitation that I have

always the same. We were

bad joke.

worried about Opal.

Opal: Life was a bad joke at that

Opal: It was super

point. I was so angry about my

abrupt when I lost

situation that I found it almost

my ability to eat –

impossible to express what I was

one day I could eat

actually feeling. The only person I

everything and the

would talk to was Iris but even then, I

next day I could eat

wouldn’t tell her much.

nothing – so the

Iris: There was a lot of vulnerability,

biggest struggle for

a lot of tears. I mean, as a young

undigested. I have other GI issues, but

me was genuine grief around not just

woman in society, I already have

that was the first thing.

no control over.

When I eat, my stomach fills up with air and then basically closes itself, and all that air pushes the food

The continuous theme throughout all of this is that love conquers all.

out completely

the food, but the meals. Instead of

preconceived notions about food and

I remember one day we had just

sitting at the table, I would be laying

body image. And when this became

eaten a family meal – it was grilled

on the couch, throwing up. And Iris is

such a significant piece of our life, so

burgers – and I stood up and threw

emetophobic [has a fear of vomit].

quickly, it definitely made an impact

up into the bushes next to our porch.

Iris: Yeah, I’m not a fan of vomit. So

on me too. >>

I knew something was wrong,

this was a gruelling experience for me.

because I didn’t feel sick. It just kept

Opal: It was a gruelling experience for

happening and happening and, by

both of us.

late June, I couldn’t eat anything.

Iris: But the continuous theme

We went to the hospital in early

throughout all of this is that love

July and the doctors said, “you

conquers all. Do I hate vomit? Yes, but

seem completely fine”. My mum

I love you.

said, “she hasn’t kept food down

Opal: You’ll hold my hair back now

for about two months”. So they

and sit with me.

admitted me and, after about a

Iris: Oh my gosh. If you told me a few

week, ran a test that diagnosed me

years ago I’d have cleaned up this

with rumination syndrome. I then

much vomit, I would have laughed in

had a nasojejunal (NJ) tube placed,

your face.

which I had for about 14 months.

I despised it. NJs have to be done under fluoroscopy and I had so many of them. It was horrific.

Opal and I spent a lot of time talking about our mental health and what was okay for us to talk about versus not talk about. There were topics of discussion that were sisterly love – I support you and I’m here for you – and then there’d be topics where it was like, I don’t know if it’s safe for us to talk about this, because we’re both really susceptible to this kind of issue.

What topics were off the table?

Opal: Weight was a big one. When I got super sick I lost a ton of weight all at once and I didn’t ever think about it in the right headspace. So talking about the sizes of my clothes or how much weight I had lost wasn’t good for either of us.

Iris: If anything that either of us said could be pulled out of context and used in a comparative sense, we avoided it altogether. Instead, it would be more like, let’s shoot the shit and just connect with each other to forget about all this horrible stuff that’s happening.

Opal: She’s my best friend and, genuinely, there was always support.

It was just that there were certain words or details we had to avoid just to try and...

Iris: Protect each other, really. The basis of it all was that we love each other and just needed to protect each other from this evil that is modern societal expectations.

What was it like – for your whole

a nasal tube, I couldn’t call them

family – when Opal first came home

spaghetti nose. But I knew that it

with a feeding tube?

would cheer you up – and it did.

Opal: It was a major adjustment, I

Opal: It really did. With my nasal tube,

think, for all of us. When I first came

it was like, haha, this will be gone

home with my nasal tube, the size for

soon! Then two years went by. Then

my age was a yellow-coloured tube.

I got my GJ tube and it was like, this

Our younger sister went and found a

thing isn’t going anywhere.

yellow piece of yarn, took a piece of

Iris: Opal and I were in high school

my tape, put the yarn in a backpack

for a year together and there was

and taped the end to her nose so we

one day, while I was sitting in my

could match.

classroom taking a test, that I got

Iris: I did not do that.

a call from Opal saying she was

Opal: June was only eight and I was

downstairs in our theatre room. She

like, this is kind of sweet. Then they

said, “Iris, my tube came out. You

both called me “spaghetti nose” for

have to come downstairs right now!”

a while.

And I was like, what?

Iris: Being siblings is maybe one of

42

the blend.

I sprinted across this giant high

the more unique relationships in

school and she’s there and she’s

this world. If I saw anyone else with

crying and she’s having a panic

POWERED BY //

I know that if I’m going to go out with friends, I’m going to need to push a bunch of water down my tube.

I think a lot of siblings feel like sidekicks sometimes. And I think the truth is that we’re all superheroes.

I’m going to need extra electrolytes on board and I’m going to need to bring medication with me in case I start to feel nauseous. I always carry emergency meds and syringes and extensions. Anything can become your new normal, it just takes time.

And then you have people in your

attack and freaking out. I saw the

For both of you, this has all been

life like Iris and like my boyfriend,

tube – it had gotten caught on a

happening at a stage of life that’s

Griffin, who will also start doing these

student’s chair and ripped out of her

typically about fun and freedom. How

things for you. Griffin carries Zofran

stomach – and I was just aghast.

does that work with a feeding tube?

[anti-nausea medication] in his

Number one, it was disgusting.

Opal: The first thing for me was

wallet at all times.

Number two, I was so worried. And

acceptance. It was realising that

Iris: For me it was about trust –

number three, Opal, you were just

this is my life and that’s okay. I might

letting go a little bit. When Opal was

absolutely in a shambles. You

not feel great every day. I might

younger, it was harder. But she’s

couldn’t even make words come out

not look my best every day. I might

reached the age where if she doesn’t

of your mouth.

be throwing up for six hours some

want to do something, I can’t make

That was the moment when I was

days. But you only get one life and,

her do it and vice versa. So I could be

like, wow, this is really serious. But in

feeding tube or not, you can make it

worrying about, does she have this?

that moment, all I felt was love for her.

awesome.

What if she does this? What if this

There was nothing else on my mind.

I’m at the stage where you’re

It was like, okay, let’s call 911. Let’s call

meant to be finding yourself, but

trust that she’s got it.

Mum and Dad. Let’s get the nurse.

I think that was already forced to

Opal: As we’ve grown up, I’ve learned

Let’s calm Opal down. And we did it –

happen when I was younger. And

to take responsibility and confidence

we fixed it. We put that tube back in

it’s allowed me to gain confidence,

with the decisions that I make about

so the stoma didn’t close up and got

which really is the biggest thing when

my health. I still rely super-heavily on

her in an ambulance and took her to

learning to live your life with a feeding

my family in every single way when it

the hospital. And all was well.

tube and a chronic illness – learning

comes to my illness, but it’s gotten to

Opal: All was well.

what you need.

a point where everybody – including

happens? But in reality, all I can do is

me – is able to let go a little bit and take a step back. This is life with illness and not illness with a side of life. We actually get to exist. >>

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43

What do your family meals look like today?

Opal: Now I eat pretty normally, so every night we have dinner together.

Iris: Minus me!

Opal: But Griffin and I went up to visit her a few weeks ago with a friend – and we had a steak.

Iris: We did, we had steak!

Opal: That said, while I have regained the ability to eat, I have not regained the ability of portion control. So I either don’t get enough food or I get a monstrous amount and then it’s on my plate, so I’m like, I have to eat this all – and I make myself sick. It’s still a learning curve. We’re almost a year into this but I am slowly getting better at it.

I think the hardest part about family meals is that it’s still a point

Looking back, what are the biggest

of tension and trauma for me, my

things you’ve learned about

parents and my sisters. A lot of my

tube-feeding?

GI conditions can be made worse

Opal: It’s difficult, it’s really hard,

by eating too fast and my parents

it’s painful and it’s scary, but it’s

will see me eating and they’ll be like,

magical. It ruined my life for a

“Opal, slow down!” And I’m sitting

little bit but, overall, it gave me the

there like, “I feel fine. Nothing’s wrong!”

chance to have a life again where I

Iris: And we’re all sitting there like, “no,

can experience the joys of being a

you’re not!” – Shipleys are stubborn.

teenager – and my sisters – and life

Opal: I lost so many of those family

can be good.

meals and I enjoy them so much now,

Iris: I don’t want to speak for anyone,

I wouldn’t give them up for anything.

but from my observations, I think

Even if there is an occasional

a lot of siblings feel like sidekicks

argument.

sometimes. And I think the truth is that we’re all superheroes. Opal and I are both superheroes. She’s been brave through some crazy stuff, but I’ve also been brave through some crazy stuff for her. The reality of it is that we are both awesome and we love each other. And that’s all that matters.

44

the blend.

It ruined my life for a little bit but, overall, it gave me the chance to have a life again where I can experience the joys of being a teenager – and my sisters – and life can be good.

Fun-size sib chats PAIGE (9) AND PORTIA (3) SYDNEY, AUSTRALIA

How are things different now that Portia has her G-tube?

Paige: She’s never pulled it out. But Mum has pulled it out by accident.

What’s your advice for other kids who have a brother or sister with a new feeding tube?

What does dinner time look like in your family?

Paige: If they have a nose one, watch their

Paige: We blend up whatever we are having for

hands. Also, make it stand out. Don’t be

Portia. Lasagna, fish, pizza… not quiche. She’s

afraid to show it, cos it’s cool.

allergic to egg.

What does it look like when you eat together?

Paige: I sit at the bench. Mummy sits on the mat with Portia and tries not to let her food get stolen by the dog.

Why does Portia have a G-tube in her tummy?

Paige: She went to the hospital for surgery because she kept pulling the nose one out.

What would happen when she pulled her nose tube out?

Paige: Sometimes Mum would think I had done it because I was closest to her.

the blend.

When you got your tube in? Is that where they were?

Callum: Probably.

Isaac: If anything, we’d remember, Callum.

What is the grossest thing that’s ever happened with Callum’s tube?

Harry: I know what I want to say.

Isaac: So do I, it might be the same thing. Three, two, one…

Isaac + Harry: Changing his tube.

Harry: Also once, when someone forgot to clamp it, stuff just started spilling out of his stomach. That was pretty

Feeding tubes can be gross, but Callum seems pretty

ISAAC (11), HARRY (10) AND CALLUM (8) BRISBANE, AUSTRALIA Callum, we’ll be chatting with your brothers but feel free to jump in.

cool about his, yeah?

Isaac: Yeah. He might be meeting someone new and then he will just be like, “look what I have!” straight away.

It’s something he shows off lots of times.

What’s your advice for other kids who have a brother or

Isaac: But not during our responses. That’s just rude.

sister with a new feeding tube?

Why does Callum have a G-tube?

nice to them.

Isaac: Because he can’t swallow water properly.

Harry: Don’t be afraid of it. Take good care of them. Be Isaac: Be careful around it. And make sure he or she is

And there are other reasons that I don’t know or

okay with it and help them if they're worried about it. Help

remember.

them not think so much about it. Stuff like that.

Callum: I don’t even know the answer to this question.

Do you remember when Callum got his G-tube?

Harry: I don’t think I have a single memory where he

Also – top thing – don’t get annoyed at them if they’re not eating quick enough or you want to leave the table but you can’t because they’re not done eating. Don’t get annoyed at them if you want them to come back

doesn’t have his tube. In all the photos I’ve seen from

and play with you, but they need to have their meds or

Mum and Dad, he has his button.

something like that. Try to put yourself in their shoes and

Isaac: I’m pretty sure it got put in a week or two after

feel how it would be to be them.

his birth, so there wasn’t a lot of time that I would have been able to see him without it. It’s just normal to see him with it.

Callum: Those two were both playing on the playground outside of the hospital.

46

the blend.

This article was made in partnership with Avanos.

For easily digestible information about tubefeeding at any age and any stage, visit TubeFed

by Avanos at tubefed.com.au.

Image: Debi Brett photography

gross.

LIKE WHAT YOU SEE? Find original artworks and prints from Kathryn Lean at etsy.com/shop/KathrynLean @kathryn.lean.artist

Winning Formula FEATURE

Be it blended whole food, a nourishing supplement or a bit of both, fed is always best.

Here, three tube-feeding families share why Abbott’s nutrition products work for them.

WORDS // MELANIE DIMMITT

A trusty top-up When Katelyn Armstrong was three months old, she stopped finishing her bottles. At four months old, she had a nasogastric tube placed and, as her mum Chelsea says, things declined from there.

“Her formal diagnosis is ‘failure to thrive’ and she struggles to hold nutrition, gain weight and grow typically for her age. At three years old she had her G-tube put in and it was the best thing that ever happened to her.”

Now five, Katelyn is looking forward to starting school and loves getting outdoors on her bike. A typical day

48

the blend.

will see her eating several meals and having PediaSure* Fibre, an Abbott nutrition product, through her tube.

“She generally loves to watch a movie, play on her iPad, play cards or read a story whilst her pump is giving her the extra top-up,” says Chelsea.

“We are so lucky that this supplement can be provided through a nutritional program and covered by the NDIS (National Disability Insurance Scheme). We’ve also found the convenience of the small bottles means we can leave extra supplies at family and friends’ homes, too.”

In giving advice to other families, Chelsea says to always ask questions and take each day as it comes. “And remember, nourishing your child in whatever way it looks is absolutely okay.”

POWERED BY //

A failsafe foundation Five-year-old Jon Beit has spinal muscular atrophy, “so his muscles are weak”, says Megan, Jon’s mum.

“He’s been tube-fed since he was six months old and it’s been a bit of a journey for us, because I breastfed him until that point.

Then I expressed milk and put it down the tube.

Then I was like, I can’t do this anymore!”

We’re able to add extra calories to his feeds and really play around with the nutrition. Having that little failsafe has been really good.

Jon had his

calories to his feeds and really play around with the nutrition. Having that little failsafe has been really good.”

On the topic of coming to terms with her child needing to tube-feed, Megan says that over time, her perspective has shifted.

“Whenever Jon gets sick, the

“There’s that mental hurdle, as a

gastrojejunostomy) tube placed at 18

first thing that happens is he stops

parent, because tube-feeding is not

months and, for a long time, thrived

digesting food, so the doctors go

your expectation of how it should be.

on a blended-food diet and overnight

straight to continuous feeds through

But once you realise that it’s your

formula feeds.

the jejunal part of his PEG-J. We’ve

issue – and not the child’s problem

been on PediaSure* since March,”

– it makes it easier for you to be like,

says Megan.

they’re not suffering, I’m suffering,

PEG-J (percutaneous endoscopic

“He had the best diet of anyone that went to his dietitian because it all went down the tube. Food, medicine,

“The good thing about it is,

water, no argument,” says Megan.

because I get it in the tins of vanilla-

“He’s always just like, ‘eh, whatever!’”

flavoured powder, we’re able to

After 18 months of no hospital

so I can get over it.” >>

adjust the calories. Jon’s quite skinny

admissions, in early 2024, Jon

and we have lots of issues with

became very unwell.

weight, so we’re able to add extra

the blend.

49

A perfect accompaniment Grace O’Flaherty loves her food.

While a rare genetic condition, Rett syndrome, impacts this eightyear-old’s physical abilities, she’s developed a healthy appetite.

“She’ll sit down in a therapy session and will not touch a toy. She will not touch a bubble machine, she will barely touch a button – but if you put food in front of her, she will grab it,” says Grace’s mum, Roxanne.

Getting enough food, however, is challenging. Grace experiences involuntary movements and periods of hyperventilation that keep her metabolism firing and make her

It’s high in calories and ticks all the boxes for what Grace needs in her day, which is reassuring. It’s also convenient – we just pop it in her school bag like her drink bottle and lunch box.

fatigued. It’s hard for Grace to get enough calories from meals alone,

For breakfast, if she’s up to it,

is reassuring. It’s also convenient –

Grace munches on toast, scrambled

we just pop it in her school bag like

“We do 500ml bolus feeds of

eggs or cereal. At school she has

her drink bottle and lunch box.”

PediaSure* overnight, while she’s

morning tea and lunch, topped up

Sometimes, Roxanne will also use

snoozing,” says Roxanne.

with 60ml bolus feeds of PediaSure*,

PediaSure* in her cooking for a boost

before heading home to enjoy

of calories. “I put it through carbonara

afternoon tea and dinner.

and other creamy-based dishes,” she

so she has a G-tube.

“So it’s a big mix,” says Roxanne.

50

the blend.

says. “While being fully tube-fed is

“We found our way to PediaSure*

not a bad thing at all, food is yummy

because it offers complete, balanced

– and I know it’s Grace’s motivator.

nutrition and ticks all the boxes for

I hope that she’ll be able to keep

what Grace needs in her day, which

enjoying it.”

Method

Gracie’s Carbonara

1.

Begin boiling water to cook pasta, following packet instructions.

2.

Finely dice the onion and roughly dice the bacon.

3.

Slice button mushrooms, adjusting quantity to your preference.

4.

In a large saucepan or skillet over medium heat, add butter, olive oil, and garlic; cook for a few minutes until fragrant.

5.

Add onion and bacon, stirring until bacon is browned and onions are translucent.

Ingredients

6.

Add mushrooms, stir, and cover for 3 minutes to allow mushrooms to sweat, enhancing the sauce.

7.

In a separate bowl, mix 3 scoops of PediaSure*

•

3 scoops vanilla-flavoured PediaSure* powder

•

1 small/medium onion, finely diced

•

4 rashers middle bacon, roughly diced

onions, garlic, and mushrooms. Sprinkle Parmesan

•

6-12 button mushrooms, sliced

on top and stir.

•

1 tsp minced garlic

•

1 tbsp butter

•

1 tbsp olive oil

•

½ cup thickened cream

•

1 tbsp Parmesan cheese

•

1 packet of your favourite pasta

with ½ cup thickened cream until well combined.

8.

9.

Pour the cream mixture into the pan with bacon,

Cook over medium heat until the sauce thickens slightly and turns light brown, about 5 minutes, then reduce to low heat.

10. Drain the pasta and add it directly into the pan.

Stir well to coat the pasta in the creamy sauce.

11.

Serve with additional cheese on top for extra flavour.

* Food for Special Medical Purposes ANZ.2024.55661.PDS.1. Use under medical supervision

This article was made in partnership with Abbott. To explore their full range of science-based nutrition products for people of all ages, visit abbottnutrition.com.au

the blend.

51

Everyday Miracles FAMILY STORIES

How do we teach the world that tube-feeding is normal? By showing the world that tube-feeding is normal. And with two tube-feeding daughters and an online community of more than a million, Shannon Willardson is doing just this.

WORDS // MELANIE DIMMITT PHOTOGRAPHY // SAMANTHA ALLYSON PHOTOGRAPHY

52

the blend.

Q&A

the blend.

53

N

ot long after two-yearold Charlotte Willardson started feeding with a gastrostomy (G)

tube, her mother, Shannon, received an SOS text from their babysitter.

“She said that Charlie’s tube had come out. And I’m like, ‘okay, which tube?’ Because if it’s just the extension set, no big deal, right? But she sends me a picture and it’s the entire button.”

Shannon had been touring a local school – one that specialises in supporting children with complex needs. Charlie has a very rare genetic condition which means she needs help to eat and drink, which is why she has a G-tube. A G-tube that, just weeks after being placed, had caught

year-old Charlie’s G-tube herself.

and interested in all the medical

on the side of her crib and popped

She does the same for her six-

aspects of their care, so I don’t mind

right out.

year-old daughter, Ava, who

changing the girls’ G-tube buttons.

shares Charlie’s genetic condition.

In another life, I think I would have

Shannon from her family home in

A former real estate agent and

pursued something in the medical

Boise, Idaho, recalling the day that

program manager at LinkedIn, since

field. And this way, I’m getting to do it

saw her rushing Charlie to hospital,

becoming a mother, Shannon’s skill

every day.”

having her tube professionally placed

set has substantially diversified.

“I was like, ‘oh my gosh, okay’,” says

Alongside her daughters, husband,

for a second time. “I told the lady who

“Speaking to my husband, I always

was doing the school tour, ‘I’m really

threaten that I’m going to go to med

Jack, Shannon shares moments from

sorry. I have an emergency and I

school,” laughs Shannon. “Medical

her family life across the social media

have to go!’ It was crazy.”

parents all deserve honorary nursing

channels she’s been growing since

Nowadays, in far less dramatic

degrees and especially since having

launching her lifestyle blog, For the

fashion, Shannon replaces eight-

our girls, I’ve become so fascinated

Love, in 2012.

54

the blend.

Chase, and their 10-year-old son,

FAMILY STORIES

Medical parents all deserve honorary nursing degrees and especially since having our girls, I’ve become so fascinated and interested in all the medical aspects of their care.

Today, more than a million followers see what this bunch gets up to – wheelchair wrangling, feeding-pump beeping and syringe washing included.

“Our biggest hope with what we share is, firstly, just to normalise it,” says Shannon. “When people see the whole family doing dinner – and for the girls, that means we’re hooking them up to their feeds – my hope is just to normalise that, yes, they eat dinner a different way. And that’s okay. That’s great.” >>

Is our life different from what we envisioned? Yes, but it’s still full and beautiful and happy and thriving.

56

the blend.

Q&A

Shannon also shares in the spirit of supporting her former self – those parents who are new to a life they never expected.

“I think it can be really empowering and comforting, especially at the beginning, to see other families who are in a similar situation and still living full, happy lives,” she says.

“I’m not talking about toxic positivity.

It’s not like we’re happy all the time or everything goes smoothly, we’re just normal people. Is our life different from what we envisioned?

Yes, but it’s still full and beautiful and happy and thriving.”

Shannon’s feelings around her girls needing to tube-feed have vastly evolved since the notion was first suggested to her for baby Charlie, who seemed to nurse with no issue until she was four months old and started losing weight.

“We thought maybe I had lost some of my milk or there was an allergy situation going on, so we switched to a hypoallergenic formula

working on eating orally, “even just

appointments we had where they

at that point – and this was still all

a little bit”, with an occupational

were nudging us in that direction

by mouth,” says Shannon. “But then

therapist and speech and swallow

and I was like, ‘no, no, no, let’s

she started presenting with other

therapist.

keep trying’.”

complications. She started having

“I was very resistant to the idea

Things changed when a swallow

infantile spasms at around five

of a feeding tube,” says Shannon.

study revealed that Charlie was

months and this is when we realised,

“Whether it was conscious or

silently aspirating and taking food

okay, something is really wrong.”

subconscious, it felt like an

and drink into her lungs.

Around the time Charlie turned

admission, or submission, to her

“We were putting her health in

one, she was diagnosed with a rare,

being really unwell. That’s what it

jeopardy by pushing this any further

inherited genetic condition under

equated to in my mind – she’s not in

– and once we had her G-tube I

the umbrella of congenital disorders

a good place, she’s really medically

was like, oh my gosh, why did

of glycosylation, called CDG-1p

complex, she’s not healthy. I don’t

we wait so long to do this?” says

(ALG11-1p). Then came months of

know how many gastroenterologist

Shannon. >>

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57

58

the blend.

FAMILY STORIES

“She was a totally different kid once

“And I remember so poignantly, when

she was nourished properly. Then

Ava was born, that feeling of being

with our second daughter, Ava,

devastated was just gone. Once she

honestly, I could not wait to get her

was in my arms, I instantly felt that

G-tube placed.”

love you feel for your kids – that crazy

Ava was, as Shannon puts it, a surprise. After learning of

love – and I knew everything was going to be fine.

Charlie’s condition, Shannon

“Don’t get me wrong. It’s not like

and Chase decided to grow

I never have moments, with both

their family through IVF and

of my daughters, where I get those

had started the process when,

little twinges of sadness about what

Once she was in my arms, I instantly felt that love you feel for your kids – that crazy love – and I knew everything was going to be fine.

despite being on

I thought their life would be. I don’t

contraceptives,

think you need to feel shame about

Shannon

that as a parent of a medically

discovered she

complex kiddo. But it was such a

was pregnant.

beautiful thing to experience with

“I called our

Ava, where I was so devastated about

geneticist even

her diagnosis during the pregnancy

before I called

and then, once she was in my arms,

my husband to

that feeling just dissipated and was

tell him,” says

replaced with overwhelming love.”

Shannon. “When

Ava, like her sister, now has four

we got tested and found out that this

bolus feeds of formula each day and

baby had the diagnosis – I feel shame

doesn’t seem at all bothered by not

in admitting this, in hindsight – I was

eating orally.

devastated. I remember thinking and

“Neither of the girls have ever

sometimes even saying, ‘can you

shown interest in food,” says

imagine having two kids with these

Shannon. “We’ve really tried to get

medical complexities?’ – and there we

equipment that allows them to

were. It felt like we were being punked.”

come to the table and easily be

The Willardsons are a family of faith,

a part of shared meals. They are

so Shannon spent her pregnancy with

extremely social and very aware of

Ava praying for a miracle.

people being around them. Charlie,

“I know she could have been

especially, has FOMO [fear of missing

healed if that was God’s plan for our

out]. If you leave the room and she’s

family, but she wasn’t, which tells me

not with you, she’ll start whining like,

that wasn’t the plan,” says Shannon.

‘hello? Bring me with you!’” >>

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screwed if it wasn’t for our unicorn nanny and our support system” – which she’ll be expanding once the twins arrive.

“I’m under no illusion that it’s not going to be really hard in a lot of ways, or that we won’t have moments where we’re like, oh my gosh, we really are in over our heads now.

I’m anticipating all of that but we’re going to take it as it comes and we’re going to hire more help and figure it out,” says Shannon.

“I think every parent has moments where they feel like they’re drowning and struggling to manage everything going on in their life. And while having more kids will be an adjustment, especially at first, Chase and I know Charlie and Ava both “light up”

him to travel a lot and so my mum

that we’ll figure out how to make it

when their brother, Jack, is around –

was doing it solo a lot of the time and

all work and it will be great! I think

and things are about to get a whole

she just made it happen. My mum was

the part I’m most looking forward to

lot more socially stimulating in the

just a boss, so I’ve probably got a little

is just more people to love on those

Willardson household. In recent

bit of delusional confidence because

girls, you know? There’s just so much

months, Shannon’s social media

of what I was exposed to as a kid.”

that is beautiful and singular about

She’s also got help. Much like in

life with them and I feel excited to

feeds have followed her family’s journey with surrogacy and, around

Shannon’s childhood home, Chase’s

the time this magazine is published,

work often sees him travelling while

they’ll welcome twins.

she solo-parents – all while creating

“I grew up in a big family – with six

content and running her own

siblings – and it was total chaos but

wellness and supplement business,

I loved it,” says Shannon, when asked

All That Nutrition.

how she’s feeling about mothering a

As Shannon shares with her

brood of five. “My dad’s job caused

followers, “we would basically be

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bring more kiddos into that.”

shopallthatnutrition.com @WillardsonFamily @shannonwillardson @shannonwillardson

Q&A

I think every parent has moments where they feel like they’re drowning and struggling to manage everything going on in their life. And while having more kids will be an adjustment, especially at first, Chase and I know that we’ll figure out how to make it all work and it will be great!

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Image: Debi Brett Photography

Syringes are a tube-feeder’s best friend – but have you mastered their full potential?

It’s time to take the plunge with these tried and tested tips from our community.

Push it FEATURE

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POWERED BY //

The wineand-diner, Kym Adams Everyone needs to be told about the cut-off extension tube trick. I’m indebted to Sharee Barker for generously sharing this hack – and it truly is a game-changer. When it’s time for a new extension set, because it’s brittle where the clip is, I just cut it at that point and it becomes my ‘straw’.

I’m very strategic about where I clip my extension set, so always keep the clip below where the cut mark would be. When I create my blenderised meals, I store them in 500ml jars or plastic containers. Then when it’s time for a feed I just use the modified extension tube to draw the blend into my Medicina ENFit reusable enteral 60ml syringe.

For my coffee consumption I have the perfect Keep Cup for an espresso and once the coffee has cooled – usually with the help of some added cold water – I just pour the coffee into the barrel of my syringe allowing it to gravity-feed into my stomach.

There are three options for wine consumption. Mostly, I just make a blend of wine, cheese, pâté and crackers, then draw it into the syringe like a typical blend. Another option is pouring it straight from the bottle into a syringe barrel and allowing the wine to be gravity fed. The less bogan version would be putting the wine in a jug.

In the photo you can see me finding a solution to only having access to a glass of wine. I drew it into the syringe via the modified extension tube, then I syringed that into the barrel of another syringe and let it gravity-feed into my stomach. >>

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Riley does push her own syringes sometimes – we always ask her if she would like to – but the majority of the time she is in the middle of playing or reading so we usually do it. She’s hilarious when she says: “Hurry up, Mum! Let me push it faster!” She just wants to go go go!

I love using my Strucket straining bucket to help drain, dry and store our Medicina ENFit syringes. We also have the Boon Grass drying rack to help dry them after washing. As we travel, we keep a set of clean syringes in a hard pencil case with some spare tubing in there, too.

Riley has three sisters and our youngest, Maisee, has been obsessed with pushing Riley’s medications and flushes since she was a toddler.

She’ll run from the other side of the house to help us!

The systematic goddess, Grecian Martin

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FAMILY STORIES

The ultimate upcycler, Eliana Joseph I have always taught my son, Luke, about the purpose of his feeding tube and like to encourage him to be independent with it. Luke doesn’t have the strength to push a blend through a syringe but he definitely gives it a good try, especially when he wants to finish and move on to something else! He prefers to inject water, as it’s easier for him to push.

We like to use the Medicina ENFit 60ml reusable enteral syringes and to help them last longer, I spray the plunger with olive oil spray so they glide easily into the syringe. Once their time has come, we have some fun in the backyard using old syringes as water pistols.

For Luke’s first birthday we created our own version of a ‘cake smash’ photo shoot at home and filled syringes with dyed yoghurt for him to paint a canvas with.

Want to hear more from Kym, Grecian, Eliana and a bunch of other tube-feeding folk? Tune into Tubie Talks, a podcast celebrating the tube-feeding community, on your favourite podcast platform.

This story was created in partnership with InterMed Medical, Australia’s supplier of Medicina syringes.

Shop the full range at shopmedical.intermedmedical.com.au

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“I’m a glass half-full person – I’m not going to compromise participation.”

Peter Macaione

Personal Accounts

Image: Debi Brett Photography

Curated PERSONAL ACCOUNTS

Care

Tube-feeding is not a one-size-fits-all thing, so why settle for anything less than a custom-made support team? We hear two stories of self-advocacy, both with a very special nurse in a starring role.

WORDS // MELANIE DIMMITT PHOTOGRAPHY // DEBI BRETT PHOTOGRAPHY

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Q&A

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T

wenty years ago,

“All of a sudden I was in the

Peter Macaione

emergency department and the

had radiation

gastroenterologist came in and said,

treatment for head

‘Look, we have no choice, we’re going

and neck cancer. “In

to have to put a feeding tube in’.”

those days it was

That feeding tube was a

a terrible, scatter-

percutaneous endoscopic

gun approach to radiation,” says the

gastrostomy (PEG) with a long tube

62-year-old musician. “Just target

permanently attached. “And it was

the whole area and hopefully get it,

kind of getting in my way,” says Peter,

you know?”

who recently made the switch to

Since then, the lead guitarist has struggled to speak and swallow.

Having developed a chronic lung

a low-profile, button-balloon-style G-tube.

“It’s great – a lot more discreet,” he

condition from food entering his

says. “I’ve got a grandchild now, so

airways, in 2023, Peter went for a

every time I pick him up he feels for

speech therapy appointment at The

it, saying ‘Poppy belly button! Poppy

Wesley Hospital in Brisbane – and

belly button!’”

came home with a gastrostomy “I wasn’t eating and I was losing weight, big time,” says Peter.

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While getting the majority of his nutrition through his tube, Peter still

(G) tube.

the blend.

carefully swallows water and his daily coffee. “It takes about two hours to

Sarah and the team moved me to the point I felt I had to give something back.

It brings me to tears, to be honest.

POWERED BY //

Q&A

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providers, sees a team of registered nurses providing nationwide support to people transitioning from hospital to home care.

“She’s just been enormously helpful the whole way along,” says Peter, who was put in touch with Sarah via the drink it, but it’s worth it,” he says.

rehabilitation team at The Wesley.

“I’ll also have a beer. I try to maintain

Soon after he was discharged, Sarah

a social presence – I’m not going to

began home visits to help with tube

shy away from being with mates, so

maintenance and, more recently,

I will sip on a beer or two.”

travel plans.

Soon after completing his cancer

“She’s arranging for my Ensure* to

treatment, alongside some of those

be sent to our hotel rooms in Spain,”

mates, Peter walked the Kokoda Track

says Peter. “Sarah’s just been fantastic. I

in Papua New Guinea. Now he and his

cannot praise her enough.”

wife, Jo, are preparing to tackle the Camino in Spain.

In a show of his appreciation, last year Peter organised a fundraiser

“I’m a glass half-full person

performance with a group of fellow

– I’m not going to compromise

musicians to raise money for new

participation,” says Peter. And

rehabilitation equipment at The Wesley.

registered nurse, Sarah Jane van

“I’m already planning the next one

Oosterhout, has ensured he hasn’t

and it’s going to be bigger and better,”

had to.

says Peter. “Sarah and the team

Sarah is part of the Abbott

moved me to the point I felt I had to

Homecare Connect program which,

give something back. It brings me to

in collaboration with healthcare

tears, to be honest.” >>

Another 62-year old, Brisbanebased Peter – Peter Russo, who goes

by Pete – is also supported by Sarah and Abbott Homecare Connect.

A former military serviceman and air-traffic controller, Pete has motor neurone disease (MND). In 2024, he had a radiologically inserted gastrostomy (RIG) tube placed as a precautionary measure. “We’re geared up and ready to go,” says Pete. “We flush it twice a day and we’ve had some practice feeds, so I know what to expect.”

Pete can still eat safely and, as his partner Tess Nobile points out, amid Pete’s medical appointments and care team coming and going, sharing meals has become all the more important.

“It’s a connection for both of us –

Many people do what the first doctor they see tells them to do, but we’ve learned to ask, what are our real options? Who can service us best?

and it’s a social thing when we go out,” says Tess.

“There’s been a lot of giving up stuff with MND. Pete can’t use his hands or arms and he’s barely walking. So to then concede that he’s got to take his massive enjoyment of food and put it through a tube, that makes us both sad.”

“But when the time comes when I need to rely on the feeding tube, my attitude might change,” says Pete. “I’m pleased the feeding tube is there because, to say it blatantly,

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I won’t starve to death. It’s the most

doctor they see tells them to do, but

important bit of equipment for me to

we’ve learned to ask, what are our

sustain life.”

real options? Who can service us

Uncertainty comes part and

best? We’ve got Sarah as a single

parcel with a neurodegenerative

point of contact – our team are all

condition – but Pete and Tess can

single points of contact – so we don’t

be sure that, throughout their tube-

get inconsistent information.”

feeding journey, Sarah will be on-

“It’s personalised support from someone that we’ve formed a

hand to help.

“She’s very responsive,” says Tess,

relationship and rapport with,” adds

who will often send Sarah photos of

Tess. “What I love about Sarah is

Pete’s tube when seeking guidance.

that she has our whole care team’s

“Sarah’s great at providing that

details, so we don’t have to repeat

support and reassuring us that we’re

ourselves. Everyone’s sharing

not going crazy.”

information, everyone’s updating

Pete also receives care at home from community nurses and support

everyone.”

Tess also urges other caregivers

workers. “But they didn’t have any RIG

to play “a more vocal role” when

experience, so Sarah offered in-home

supporting their loved ones.

service,” he says. “She also trained our

“I know Pete’s living through this,

support workers and the community

physically, but it’s a ‘we’ journey for

nurses. Nothing was too hard.”

us,” she says. “Find your voice and,

In sharing advice with those who

without any shame, speak up. And

are building a team of specialists and

don’t be afraid to handpick your team

carers, Pete says to be very selective.

based on what works for you and

“Many people do what the first

your family. That’s really important.”

This article was made in partnership with Abbott Homecare Connect. To learn about their nationwide team of registered nurses offering comprehensive home support for patients, caregivers and healthcare professionals, visit abbotthomecareconnect.com.au * Food for Special Medical Purposes ANZ.2024.55440.TUBE.1. Use under medical supervision

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Limitless PERSONAL ACCOUNTS

From TPN and tube-feeding to a bowel transplant, Garrett Taira has tried it all. We chat with the actor, dancer and chronic-illness advocate about self-esteem, support systems, and the dangers of door knobs.

INTERVIEW // MELANIE DIMMITT WORDS // DANIELLA DOUGHAN

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G

arrett Taira’s medical history is, in a word, complex. Born in Maryland, USA, with chronic intestinal pseudo

obstruction, he’s required daily IV nutrition, multiple hospitalisations and surgeries throughout this life.

On total parenteral nutrition (TPN) from when he was nine months old, Garrett received his first gastrostomy (G) tube at age seven. In 2010, at 18, he suffered agonising pain caused by perforations – holes – in his intestines. After emergency Ileostomy surgery, Garrett woke to find his colon, large intestine and almost 2m of small intestine had been removed.

What remained of his small intestine had been brought through his abdominal wall, allowing his body’s waste to travel through a stoma, into an ostomy bag.

In the midst of these extraordinary health challenges, in high school, Garrett found a passion for dance and has gone on to become a professional dancer, actor, comedian and speaker. He’s been featured on The Ellen Degeneres Show, choreographed an award-winning performance at Beyond the Stars Dance Competition and has his own TEDx talk.

In 2022, Garrett went under the knife again – this time for a lifesaving double organ transplant, receiving a new bowel and kidney.

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My body has taken me through all my hardships. It’s like when people say, “be proud of your scars”.

It’s just like that, but with tubes.

PERSONAL ACCOUNTS

Bowel transplants are very rare, with

You always know – I’m sure a lot of

only 90 or so performed worldwide

kids can relate – that you’re different

each year. It’s also a high-risk

and you’re frustrated and you don’t

transplant, with a minimum 12-month

know why it’s you and not the other

recovery period.

kids. My parents would always make

Two years on, when we caught up with Garrett he was generous with

sure that I stayed grounded and grateful.

his time, fast with his laughter and positive with his responses.

This is his story.

You started dancing and acting as a teen. What was it like having tubes while doing these physical things?

What was it like growing up on TPN,

I was always self-conscious of my

with an IV line in your chest?

body. I had a lot of tubes and I was

I think the whole reason I did so well

always wearing a swim shirt at pool

was because my parents were so

parties. I think when I found dance

careful. My dad was a dentist and my

it was really nice because I got a lot

mum was a speech and language

of validation from my peers. I had

therapist and also trained as a nurse.

a really good group of friends and

We were able to be very sterile –

classmates who were very supportive.

although I did get sepsis a lot.

There was a time at the beach

I’d participate in sports and we’d

when a friend told me I didn’t need to

change my TPN tubing after every

be so self-conscious and I took that

activity. But sometimes, when you’re

on. My body has taken me through

in the middle of fifth-grade gym

all my hardships. It’s like when people

class and your mum’s not there, you

say, “be proud of your scars”. It’s just

don’t know how to change it!

like that, but with tubes. Since then,

Growing up, the hardest thing to get used to was watching everyone

For tubies, door knobs are our arch nemesis!

I’ve stopped wearing a swim shirt.

When I danced it was easy for me

else eat around me. Injecting food is

to focus on the music and let my

not the same as chewing food!

worries fade away. I felt a lot more present and I think that’s what drove

As the oldest of four siblings,

my passion even further. By the time

how were you included in family

I started acting, my tubes weren’t a

celebrations that centred on food?

big deal for me in front of my peers,

Sometimes I would just watch, other

or going on dates, because I was very

times I would eat and then vent my

nonchalant about everything.

stomach immediately so I could just

Sometimes though, my cords

taste food. But I don’t recommend

would get stuck on door knobs or

doing this, you just dehydrate

chairs or something. For tubies, door

yourself.

knobs are our arch nemesis!

In 2010, you woke up after emergency surgery with an ostomy bag and most of your digestive system removed. How did this shake things up? My intestines never really worked because they were always extended. If I ate a teaspoon of something, I would have a stomachache for weeks. I’d be in so much pain that I would go to school hunched over. I was always so bloated, I looked really distended.

My surgery to get the ostomy really changed things. I felt a lot more comfortable when breathing, relaxing and moving. It really improved my quality of life, despite the management of an ostomy on top of TPN. We tried tube-feeding before surgery with the G-tube and then after surgery with the G-tube, but it just wasn’t working for me. It was a step in the right direction, but we didn’t really get there until more than 10 years later. >>

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Is that when you realised you needed

anything because I’m sure they’ve

So you don’t need to be too precious

a transplant? Yes. TPN taxes the liver,

seen it both ways. But I ended up

with it? Yeah! You can spin it like a

so sepsis had started happening

getting a bowel and a kidney, and

wheel and flick it and stuff, it’s super

more often. And antibiotics tax the

dude – when they say intestinal

durable. It’s great. I’d tell anyone who

kidneys, so I was getting kidney

transplants are the hardest to recover

was worried about getting one that

disease. I was also getting a lot more

from, it’s the truth.

you’re going to wish you had gotten it

sad and depressed about where my

a lot sooner. It’s like you were driving a

life was going to go and what was

What happened after the

going to happen, because it was all

transplants? I stopped TPN after

such unknown territory.

about a week and a half. We slowed

What are you excited about,

down and wanted to transfer to tube-

career-wise, right now? I think I

check-up and the specialists

feeding. I had a new ostomy with a

pursued acting and dancing because

mentioned I should consider getting

new intestine. My doctor wanted me

I had low self-esteem and was getting

a transplant. At the same time, I was

to try a little bit of food, so I started

external validation from others.

really trying to turn my life around.

with Osmolite through the G-tube,

Because I was really self-conscious

I was taking steps to get out of

then tried eating things like baby

about how I looked, I always felt like I

depression, I was renovating my

food packets that you squeeze, then

had to prove something. I have higher

basement, I was working out, I was

more starches like toast, in very small

self-esteem now so I don’t need the

trying to get some momentum going

amounts.

external validation of dancing and

In 2022, I went in for a routine

to hopefully catch a break.

1984 Corolla and now you’re in a Tesla!

filming to make me feel like I’m worthy.

I think a big reason why I wanted

Can you eat whatever you want

What I love about dance and films

to do the transplant was because I

now? I’m eating a very strict diet

is storytelling and recently, I’ve been

didn’t want my parents taking care

because I’ve been managing the

able to do this within our community.

of me in their golden years. Without

transplant and getting used to what

I feel like my passion is helping more

the transplant, in a few more years,

foods work and what foods don’t.

people who are also struggling while

I’d have been on dialysis and things

But when I cheat and stray from my

managing chronic illness, or feeding

would just have plummeted from

diet, it blows my mind. Have you

tubes, or just don’t know what the

there. And my parents have sacrificed

ever seen the movie with Bradley

future looks like.

so much for me already.

Cooper, Limitless? He takes a pill and

No one ever knows how long a

can access 100 per cent of his mind.

transplant is going to last and since

That’s what it feels like.

time is so valuable, I want to spend

Making that decision must have been terrifying. What risks were you

that time doing what I can to help

made aware of? The doctors said I

When you got your G-tube out in

could still need the ostomy, that there

2024, you published a beautiful

was a chance of rejection, that I’d

social post – almost like an ode

Find more from Garrett – and

need a lot of blood transfusions and

– saying goodbye to it. What was

support his work – on his Patreon

that the first year would be crazy,

this adjustment like? Oh man, I still

platform patreon.com/Garretttaira.

because [that’s when] they’re most

feel like I have a G-tube! I still reach

worried about my body rejecting the

for it because I think it’s leaking

new organ and the kidney being able

sometimes. That G-tube was one of

garretttaira.com

to handle it.

the best things that ever happened to

TheGTexperience

It was my decision to do the

me because it brought so much relief

surgery. Even when I asked the nurses,

to my life – and it was the one thing

“what would you do?” they didn’t say

that was low-maintenance.

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others.

@garretttaira @GarrettSTaira

Artwork: Kathryn Lean

A series celebrating people and families who tube-feed.

Tune in on your favourite podcasts platform.

Making PERSONAL ACCOUNTS

At 22 years old, with multiple organs failing, Celia Chartres-Aris was told she had a less than 10 per cent chance of survival. Today, she’s designing new laws aimed at levelling the playing field for the disability community.

WORDS // KATE THOMAS

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Q&A

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81

C

elia Chartres-Aris

have all enlisted her help. So too have

wants you to know

the UK Government, the European

that everything

Union and the United Nations. Her

is going to be

work has been recognised by Forbes,

okay. Those six

The Financial Times, Metro and the

reassuring words

BBC and, in 2024, the Shaw Trust

are what Celia

Disability Power 100 named her the

longed to hear when she received her first feeding tube.

Celia is a UK-based, multi-award

the blend.

But rewind to 2019 and, as Celia lay in hospital, surrounded by the

winning adviser, lobbyist, investor

beeping of monitors and the glare of

and policy designer. Some would say

bright hospital lights, she was about

she’s the ultimate advocate. If you’re

to be met with a smorgasbord of

wanting to design new legislation or

feeding tubes.

improve equity of representation for

“The feeding tubes were coming

disabled people, she’s the person

on and off,” Celia recalls. “I had NGs

you’re likely to turn to.

[nasogastric tubes], which then

Apple, LinkedIn and Coca-Cola

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UK’s most influential disabled person.

switched to NJs [nasojejunal tubes].

PERSONAL ACCOUNTS

Celia began studying law, a passion she had since childhood, with aspirations to pursue a career in politics. “I was mad about it. My family always used to say that I was getting a degree in arguing,” she says with a grin.

Then the NJ tubes

I left university early but very much had the mentality that I can do anything – and I won’t let my disability stop me.

During Celia’s second year

stopped working and

of university, her health took a

I was completely

dramatic turn from “she’s always ill”

bed-bound for about

to “something really isn’t right”. She

a year.”

began experiencing unexplained

Growing up in picturesque

stomach issues.

“I was struggling through my degree,

Hampshire in the

just on my final legs trying to pull

UK, Celia was often

myself through it,” Celia says. “I left

referred to as “the

university early but very much had the

sick kid”. She was

mentality that I can do anything – and

diagnosed with multiple conditions before doctors identified Loeys-Dietz

I won’t let my disability stop me.”

After leaving university, Celia met

syndrome, a genetic connective

her future husband and began living

tissue disorder that she shares with

a more relaxed life, trying to get back

her father.

on her feet. Then, the pandemic hit and Celia experienced non-Covidrelated multiple organ failure, leading to her being placed on total parenteral nutrition (TPN), where essential

Wedding image: Luke PD Freeman

nutrients are delivered directly into the bloodstream.

Her doctors gave her a slim chance of going home, just under 10 per cent.

In intensive care, she was isolated and too weak to even hold her phone, relying on nurses to relay messages from family and friends. The stakes were especially high but, after months upon months in hospital, she returned home. >>

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who are tube-fed can’t have fun.

She’s experienced everything from people not making space for her at the dinner table to others pulling on her tube, laughing, or even shouting at her in the street.

In a recent LinkedIn post, Celia shared an encounter where a passerby called her tube “disgusting”.

She wrote: “Do you not think that as a young woman covered in tubes, bags collecting fluids, and goodness knows what, and with a body which doesn’t look like anyone I see in the media, I battle with my appearance and selfconfidence every single damn day.”

Alongside her post was a photo

This is our lives. This isn’t going anywhere.

I’m going to have this for the rest of my life.

of Celia, her hair swept to one side and her shirt pulled down to reveal the array of tubes and tape across her chest. She signed off by saying: “This picture is for you. Enjoy my disgustingness. I for one won’t hide,

“I survived. I did it. I fuelled my

Now 27-years-old, five years after

or stop showing what I wish I had

organs back up again and we got

first receiving her TPN, Celia describes

seen growing up, to know that all

there,” says Celia. “I was sitting at

her connection with her tube as “a

bodies are different, and all bodies

home, my new life on TPN, not able to

funny relationship”.

deserve to be seen and respected

eat or drink, trying to rebuild my body

“I am never going to sit here and

back as much as I could, thinking to

say, ‘I love it. It’s amazing’,” she says.

with equity.”

Now would be a good time to mention that, among her other

myself, what am I going to do?”

Celia explains that it’s taken a

It didn’t take long before she

lot from her, like the experiences of

accolades, Celia was the first person

had an idea. Using her specialist

being a 20-year-old out with friends

to walk London Fashion Week while

knowledge in human rights law and

for drinks or dinners. Some of her

having a blood transfusion.

passion for accessibility, Celia helped

friendships have faded, because

birth the world’s first policy think tank

people assumed she couldn’t join in.

focused on disability. From there,

“But it’s given me my life – I

She believes that most of the time, when people act with discrimination towards disability and feeding tubes,

her career snowballed to working

wouldn’t survive without it,” she says.

it’s not out of hatred but, rather, a lack

around the world with governments

Throughout her journey Celia has

of understanding. She also believes

and policy makers to design new and

encountered many misconceptions –

there’s a massive misunderstanding

amend old legislations.

one of the biggest being that people

about the purpose of tubes.

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“There has been such amazing awareness around feeding tubes and eating disorders,” Celia says.

as part of everyday life.

It’s just your body.”

Celia’s daily routine

“But there hasn’t been enough

is centred around her

conversation around people that live

food pump schedule.

with these forever. This is our lives.

She starts her day by

This isn’t going anywhere. I’m going to

unplugging at 7am

have this for the rest of my life.”

and reconnects at

It can feel taboo and unsexy to talk

4pm. Everything she

about things like food digestion and

does revolves around

bathroom habits. But Celia implores

these times.

us to shake off our discomfort and try,

You don’t need to do things the way everybody else does.

Being different is the one thing that we all have in common.

Everything is going to be okay.

Following such a strict schedule

planned or hoped. You don’t have

especially for those who are new to

can feel limiting – and Celia

to feel positive all the time, but it’s

tube-life.

emphasises that there simply isn’t

important to “remember that your

enough psychological support for

tube has given you your life back”. All

[tubes] as these incredible life-giving

people transitioning to life with a tube.

the happy moments – playing with

things, not something disgusting that

“What’s not covered are the mental

your dog or going on vacation – are

we don’t want to talk about or see.

health implications of adjusting your

possible because of it and fuelled by it.

The ultimate goal would be – and I

lifestyle and learning to socialise and

hate the word normal but I’m going

participate again,” she says. And she’s

things I’m doing now if I didn’t have

to use it – to normalise tube-feeding

petitioned her own hospital about this

my tube,” she says. “The alternative

on numerous occasions.

would not make me happier. It

“I wish people would be able to see

“As soon as somebody is given a

“I wouldn’t be able to do any of the

wouldn’t make my life better.”

tube, there should be an automatic

Celia often feels nervous about

referral to a mental health support

sharing her personal experiences.

team. It’s vital.”

However, that anxiety is outweighed

Drawing from her own experiences,

by her desire to shed light on the

Celia highlights the need to find

realistic side of disability. She believes

coping mechanisms that work for you.

that every story she shares helps

“I always focus on the purpose

someone out there feel less alone.

behind it and think about where I’d

“Trust me, everything you’re

be without it. When I didn’t have my

thinking, I get it,” she says. “The

TPN, I dreaded food. Everything I ate

biggest thing I’ve always wanted to

made me sick and I often had blisters

be told is that you don’t need to do

and burns all over my mouth from

things the way everybody else does.

vomiting.”

Being different is the one thing that

Celia stresses that it’s okay to feel sad that life didn’t turn out how you’d

we all have in common. Everything is going to be okay.” disabledbysociety.com celia.chartresaris

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Flying PERSONAL ACCOUNTS

High

Not long after her feeding tube was placed, this cheerleader was back in the air, chasing her dreams, bringing thousands of supporters along for the ride.

INTERVIEW // MELANIE DIMMITT WORDS // DANIELLA DOUGHAN

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Image: AKC Photography LLC

Q&A

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E

ight-year-old Sutton

“I was like, ‘What is it going to look

Short had never seen

like?’ ‘Am I going to feel it when it’s in?’

anyone with a feeding

I thought I couldn’t cheer, because I

tube before she

thought there was no way I could tie

had her nasogastric

it up like I do, so I thought it could get

(NG) tube placed in

pulled out.”

December 2023. The Florida-based

Sutton’s trick? Tying her NG tube

youngster was more concerned

up in her ponytail, thanks to a handy

about making it on to her dream elite

video from one of her Instagram

cheerleading team, the Biker Babes,

followers, a gymnast who also has

as a “flyer” – the athlete lifted into the

an NG tube. Sutton’s Instagram

air during a pyramid or stunt.

account @thelittlestflyer has quickly

Sutton made the team, feeding

fostered an online community of

tube in place, and now has the goal

tube-fed kids and their parents,

of competing in state and then world

searching for and sharing advice.

“When I first got my tube, a couple

championships.

“It feels like a dream and it feels

of minutes afterwards, I kind of felt it in

amazing,” says Sutton when we

my throat, and it was uncomfortable

speak to her and her mum, Kali.

to sleep because it was in my throat

Before having her NG tube placed, Sutton was worried about how it would feel and whether she could continue doing what she loved.

all night,” says Sutton. “But then by the

You should try and do your activities. I was a bit cautious at first, but now I’m my normal self! second day I had it, I didn’t feel it.

A couple of weeks later I kept waking up in the morning and I’d think I didn’t have anything on me, but then I saw my tube and realised ‘oh I do have something on me!’”

Sutton’s sisters, six-year-old twins Sawyer and Merritt, also needed to get familiar with her NG tube.

“My sisters were just worried, they thought it could come out very easily,”

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Image: AKC Photography LLC

says Sutton. “Actually, in the pool

When it comes to feeding, Sutton

once I was swimming and my sister

does a 10-hour feed at night and has

Sawyer came swimming towards me

recently adjusted to a one-hour feed

and she kinda pulled my tube out a

during the day, after two daytime

little and she panicked. She was so

feeds caused stomach aches from the

scared. My grandma helped me put

volume.

it back in and it didn’t hurt because she’s a nurse.”

Now that everyone has adjusted,

“Then for lunch I have something out of my lunchbox like half a bagel and some snacks while I’m on camp.”

Sutton says she hasn’t fundamentally

Summer camp, Sutton says, is a

changed since getting her tube

daytime camp full of activities including

put in, but there have been some

acting, where she simply adjusts her

unexpected benefits.

tube to the task at hand. “We have a

“I’m the same person, but I went

bunch of activities, so I’ll tie my tube up

from 28 to 38 pounds and I definitely

and then just put it down for my feeds.”

have more energy. We were at this

As for Sutton’s advice for anyone new

festival and it had this tall climbing

to the tube-feeding world, it’s all about

tower and if you make it to the top

continuing to do what you love.

you press a blue button. I couldn’t do

“I’d say, just tie it up in your hair

that before – I didn’t have enough

with bobby pins or just put it through

strength in my arms and my legs

your shirt. You should try and do your

when I tried – but I did it with my

activities. I was a bit cautious at first,

tube. It felt amazing!”

but now I’m my normal self!” >>

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How did you find the right balance of what goes in Sutton’s tube?

We were in the hospital for a week, so we did a lot of experimenting there.

We use the PediaSure Peptide 1.0 Cal formula and that has worked for a really long time.

Her night-time feed is pretty easy when she’s sleeping and it doesn’t bother her. It’s pretty flexible and we’ll start anytime between 8pm and 10pm – some nights she doesn’t get home from cheer until 9.30pm!

Sutton does eat regular food, too, so I don’t feel as stressed about it if she misses something.

How did you help prepare Sutton for having her feeding tube placed?

She’s very smart and really likes

5 MINS WITH SUTTON’S MUM, KALI When did you realise that Sutton might need a feeding tube?

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being completely honest. We searched for videos of tubes being placed and it was really hard to find them. That’s why Sutton wanted her tube being placed shown on her Instagram – because nothing existed, especially for kids.

Sutton asked if she could still cheer

We’d been on this journey since she

with a tube, and I was like, “I don’t

was a baby and never gained weight.

know, let’s Google it”. We couldn’t

It was seven years of feeding therapy

find anyone else who did it, so once

and trying a high-protein, then a

we found out from our doctor she

high-fat diet and pushing Sutton to

could still cheer, Sutton said, “I want

eat and her fighting back and me

to be that person that people can

feeling like I’m force-feeding my child.

find, and show everyone you can

At the end of last year we were told

still do it”. That’s how we started her

Sutton’s weight was too low and that

Instagram and that’s why she asks for

she needed to be tube-fed. It was

everything to be put on there.

overwhelming, stressful and nerve-

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medical things so it was just about

We started it in December 2023

wracking but I turned a corner in my

and now Sutton has over 21,000

brain and thought, maybe this will be

followers. It’s been amazing to hear

a good thing. It was a real process of

stories from other tube-feeders all

absorbing it.

over the world. We get a lot of DMs

Sutton said, “I want to be that person that people can find, and show everyone you can still do it”. That’s how we started her Instagram and that’s why she asks for everything to be put on there.

What advice do you have for parents who are new to the experience of tube-feeding their child? Just know that it’s amazing. It really does help them so much – and it’s not as scary or complicated as it seems. You get used to it and when you see your kids doing so well from it, you realise it’s the right decision.

Have faith that the doctors know

from parents who find our account

mind it being on her face, there’s

what they’re doing and that kids can

and their kids are just super grateful

no problem continuing. She even

adjust to way more than you think

to see another kid happy with a tube.

has patients who put it in at night

they can.

We get messages from parents

and take it out during the day by

whose kids are about to get tubes

themselves. So if Sutton did need it

How do you feel when you see Sutton

and Sutton will send them private

longer-term, that could be an option.

cheering and hear her speak so

DMs saying “good luck, you’re going

Right now, Sutton changes her

confidently about her experience?

tape every week and her friends get

I’m so unbelievably proud. I never

excited. She designs her tapes herself

thought she’d be changing people’s

How do you deal with unwelcome

and to her, it’s like an accessory. We

lives but she does and it’s incredible.

advice or comments? The good

are hoping to wean her off but she

It brings a lot of awareness to not

far outweighs the bad and when

needs to get her weight to a stable

only the tube-feeding community,

we’re helping families, we know

level and then needs to eat enough

but people who would never have

we’re doing the right thing. We’ll

to sustain her weight. It’s just one day

an association with tube-feeding.

get a few Munchausen syndrome

at a time, one appointment at a time.

to do great”.

I think the cheer community is known for everybody looking a

[a psychological condition where someone pretends to be ill] comments

How often does Sutton need her

certain way. It’s not very common

or people saying that we’re exploiting

tube replaced? About every six

to have a disability in the cheer

our child, but Sutton wants to do this. In

months as long as we keep it clean.

community – aside from disability

the beginning I blocked a few people,

We’re very particular and we never

teams – and Sutton is bringing a

but now her followers will clap back at

give her anything without flushing it

lot of awareness that you can have

people for us so I don’t have to.

afterwards with seltzer water to make

differences and still do what you

sure there are no clogs. We’ve only

want to do.

Sometimes at cheer competitions, Sutton gets stopped and asked for

had to change it once, after about

photos which is really cool!

six months. Changing it is a whole

@thelittlestflyer

process and we have to go to hospital What are your hopes for how Sutton

because it has a stylet [a thin wire that

will eat in the future? Our doctor is

helps during placement] in it, so she

really progressive with the NG tube

needs an x-ray to make sure it’s in the

and feels as long as Sutton doesn’t

right place.

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“We want tube-feeding families and people to be fully informed.”

Sarah Thomas

Professional Perspectives

The PROFESSIONAL PERSPECTIVES

G

Avanos clinical education specialist Robyn Wortel gives us the low-down on a very common stoma issue – granulation tissue – and how to wave it goodbye.

WORDS // ROBYN WORTEL ARTWORK // KATHRYN LEAN

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Word

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Granulation tissue has a few names.

Here are some of the common

It could be called granulation. It could

approaches that will be in their toolkit:

be called hyper-granulation. It could be called proud flesh – which always makes me think of it standing up there proudly, like Captain America.

It all means the same thing, which is a proliferation of cell growth coming from within the stoma tract itself.

That proliferation is the body’s way of trying to heal itself, because the stoma is not a natural body opening – it’s a created opening – and the body is clever in trying to heal things that it thinks shouldn’t be there.

While the jury is out on the precise cause of this phenomenon – and it doesn’t happen in every person, or in any one person all the time – generally, clinicians agree that it seems to be caused by irritation.

If a feeding tube doesn’t fit well, chances are it’s irritating the stoma and the stoma is probably going to react and try to protect itself.

The problem with the granulation

FIND THE RIGHT FIT First of all, you’ve got to make sure that your tube fits well. If you’ve got a low-profile tube, the stoma needs to be measured for length. If you’ve got a long tube that has a moveable skin disc, you need to make sure that skin disc is sitting approximately 2-4mm above skin level.

If you’ve got a well-fitted feeding

SLATHER UP Certain topical creams can work, like a hydrocortisone cream, which can be prescribed by the healthcare professional looking after you.

A clinician might also choose to do a hypotonic saline solution – we’re talking about 18 per cent saline, so it’s really, really salty – and that salt helps to draw the moisture out of the tissue.

FEEL THE BURN

tube, chances are you won’t see

Silver nitrate sticks are another option

a lot of granulation tissue. But if

– although they can sting. These burn

you do happen to have some, you

the granulation tissue away, but you

need to treat it. And there are a

also need to make sure that the good

couple of things that can be done

skin around the stoma is protected so

at the discretion of the healthcare

that you don’t end up with burnt skin,

professional who’s looking after you.

extending the issue further.

The incidence of granulation

DRESS TO COMPRESS One option for treating granulation

tissue is that it’s moist, tender and,

tissue is a hydrocolloid dressing

usually, painful. It will leak, it will stain

applied underneath the skin disc

clothes and it might have a bit of an

of the tube to apply skin-touch

odour. All of these irritations are really

pressure, which helps to flatten

unpleasant and uncomfortable.

granulation tissue. This needs to

So, how do we treat granulation

be applied to that flesh until the

tissue? The answer will come from your

red, elevated, excessive tissue has

healthcare professional, who’ll have

flattened and no longer appears

their own tips and tricks they like to use.

at the mouth of the stoma.

tissue is fairly high. Florida-based paediatrician Astrid Leon reported on hypergranulation in children*, suggesting it’s the most common complication in paediatric patients.

Meanwhile, alongside her team at Melbourne’s Northern Health, dietitian and nutritionist Emily Farrugia did a systematic review and analysis around hypergranulation, infection and misplacement**, finding that one in 10 adults with a gastrostomy will experience a complication related to one of these issues.

In my own experience, more often than not, granulation tissue will arise

This article was made in partnership with Avanos. For easily digestible information about tube-feeding at any age and any stage, visit TubeFed

by Avanos at tubefed.com.au.

when a tube isn’t a good fit. So like I said, it’s best to get this right at the start.

* ‘Prevention of hypergranulation tissue after gastrostomy tube placement: A randomised controlled trial of hydrocolloid dressings’, International Wound Journal, 30 August 2018, accessed via: doi.org/10.1111/iwj.12978 ** ‘Proportion of unplanned tube replacements and complications following gastrostomy: A systematic review and meta-analysis’. Nutrition & Dietetics, 23 August 2023, accessed via: doi.org/10.1111/1747-0080.12839

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ARFID explained It unpacks as Avoidant, Restrictive Food Intake Disorder – and it’s getting around. Dr Tessa Taylor, founder of Paediatric Feeding International, gives us the downlow on this feeding difficulty.

In children, mealtimes may feel drawn out and involve them leaving the table, pushing plates away, or crying. You might notice difficulty chewing or swallowing, and foods might be spat out or held in the mouth for long periods.

Children might not drink water from a cup, use utensils, or take their medication.

Caregivers may have to shop all over and bulk-buy very specific cups or foods, contact companies if they run out of alphabet-shape

Why is ARFID having a moment?

don’t need to decide whether it’s a

potatoes or change the yoghurt

There’s lots of buzz around ARFID,

disorder or which disorder it is, what

pouch label or cap colour, deliver

with claims that it’s “new”, “rare”

to label it, or if it is severe enough to

fast-food fresh to school, go to

or “doesn’t have a treatment yet”.

seek help.

midnight bowling so their child will eat, or pack camping cooking gear

However, it’s more of a name

in their car so the temperature will

change than a new condition.

How does ARFID tend to show up

Paediatric feeding disorders (PFD)

in the children you support?

already have a well-established,

Feeding difficulties come in many

empirically-supported treatment

different forms. A person might only

How is ARFID treated? This approach

dating back 50 years.

eat a narrow range of foods or

is individualised and focuses on

limited variety – no vegetables or

each person’s current specific

comprehensive than ARFID. That

fruits, for example – graze on snacks,

feeding needs.

said, if you have concerns about

or consume very specific textures

your or your child’s eating, you

or brands.

The PFD diagnosis is also more

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be just right.

Because feeding difficulties can have multiple causes, evaluations

POWERED BY //

by multiple professionals – such as a

How has this kind of intervention

later in life. He had already been

gastroenterologist, allergist, speech

helped your clients? One of my

through an unsuccessful hospital

pathologist for swallow safety, dietitian

clients – a nine-year-old, healthy boy

admission that stopped the tube

– are needed to ensure that medical

– suddenly stopped swallowing even

feedings to promote hunger.

and physical issues are addressed first.

his own saliva, which caused a huge

This child had two intensive

regression in his life. His mouth was

admissions with us, the second

aspects of the mealtime environment

constantly full of saliva so he was no

focusing on chewing and increasing

or foods and drinks, such as providing

longer speaking or using his hands,

food texture. He was such a trooper

incentives and positive interactions

which were busy holding a napkin in

and learned it all! We’ll always

for swallowing – and setting small,

one hand and his lips together with

remember his “graduation meal” where

achievable mealtime requirements

the other. This boy had also stopped

he was able to order off the menu at

and gradually increasing them.

participating in activities, was back

a cafe and drink from a cup instead

Services may need to be intensive

in nappies, out of school and not

of his mum having to pack formula

but can work quickly, within days and

sleeping properly.

and purées.

Approaches involve changing

weeks, with big achievements.

He had two hospitalisations and

Family involvement is also critical

the full gamut of medical work-ups.

What advice do you have for families

to success, considering unique family

For 10 days he did not respond to

currently facing feeding challenges?

dynamics and culture – and caregivers

treatment – which is highly unusual.

You’re not alone. You may hear

need lots of support to learn how to

We ended up having to also work

that children will grow out of it,

keep up the gains by themselves.

with him outside of meals, across his

eat if hungry, are fine if they’re not

whole day.

underweight, or are not ready for

What role can feeding tubes play

The moment when he finally

feeding intervention. But research

in supporting people with ARFID?

swallowed some saliva, we were all

suggests this is not the case and,

Tubes can be necessary and beneficial

crying and couldn’t believe it. His

in fact, the problems can worsen

– literally life-saving – in the short-term

mum was jumping up and down,

over time.

while a person secures help, to get

hugging him and celebrating. The

them healthy enough to participate

process took seven weeks but he

people need the right help – and this

in therapy and address nutritional

finally got off his nasogastric tube,

support is available. It can work quickly

deficiencies and hydration. People may

gained weight, and reached a variety

and have rippling positive effects into

also have a combination of both ARFID

of 94 foods across food groups.

other areas for the person and their

and PFD and need tubes longer while

Another more typical example was

working on increasing oral intake and

an extreme premmie with a G-tube

learning skills.

who had to learn his mealtime skills

Feeding difficulties are complex and

loved ones.

This story was made in partnership with Paediatric Feeding International, a feeding therapy clinic and program providing international consultancy and home services for paediatric feeding difficulties including tube weaning and ARFID. Connect with Dr Tessa Taylor and her team at paediatricfeedingintl.com where you’ll find resources including her ARFID Eating Brief and Checklist.

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Dream Team PROFESSIONAL PERSPECTIVES

With collaborative care crowned the best approach for paediatric feeding issues, you’ll want to surround your kid with a fantasy league of specialists. Here’s one we prepared earlier.

WORDS // MELANIE DIMMITT

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POWERED BY //

T

heir multidisciplinary

“That’s the gold-standard, best

elsewhere, so we hear about their

approach – a

model of care,” says Simone, while

experiences. You don’t want a sterile-

combination of

literature* examining treatment for

feeling, clinical environment – and we

dietetics, speech

PFDs very much has her back.

definitely don’t provide that.”

and occupational

The Kids Feeding Specialists team

Claire Davidson, another senior

therapy, and

are regularly involved in training

paediatric dietitian on the team,

psychology – draws

medical students and also offer

loves not having to rush from one

a complex crowd to Kids Feeding

clinical supervision, both in the clinic

family to another. “There’s so much

Specialists in Sydney. Poised to

environment and online.

pressure and stress on parents and

tackle a vast spectrum of feeding challenges, once a family is in their

“Our space arose from my passion to put together an experienced

when their kids have eating difficulties, those parents are looking around

care, this team pays as much attention to their emotional state as their nutrition, feeding skills and development.

“I just felt there wasn’t a safe space in the private health sector for children with complex feeding difficulties – and families weren’t getting the specialist multidisciplinary

comparing,” says Claire.

I love having the time to say, ‘Every child is different. We don’t have to aim for a so-called normal diet. Let’s work with what your child can do and look at their nutrition within what they can do’.

support they required at

“So I love having the time to say, ‘Every child is different. We don’t have to aim for a so-called normal diet. Let’s work with what your child can do and look at their nutrition within what they can do’.”

Senior occupational therapist Mearelle Kachwalla says that families are relieved to

such a stressful time in their lives,”

multidisciplinary team to support

says founder Simone Wright.

children – and we now have an

have found the team’s support.

“A mother we’re working with broke

Feeding difficulties are common in

amazing team of clinicians with similar

down in tears and I thought, ‘oh no’,

children – all the more so for children

passions and interests,” says Simone.

I thought I was being really gentle!

with disability and infants born prematurely.

A senior paediatric dietitian with more than two decades of clinical

That team works together in a

But she said, ‘these are tears of

space that is very intentionally not

relief because for 10 years I thought

situated in a hospital.

I was doing something wrong’,” says

“We break that standard, ‘clinical’

Mearelle. “Families carry so much

experience, Simone points out that

barrier,” says Dr Amanda Khamis,

guilt. We’re here with empathy and

when it comes to paediatric feeding

a senior speech pathologist at Kids

really allow families to feel heard,

disorders (PFDs), a collaborative

Feeding Specialists. “A lot of the

understood and supported, which

approach is essential.

families that we see have been

means we get the whole picture.”

* Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework.

Journal of Pediatric Gastroenterology and Nutrition, Volume 68, Number 1, January 2019.

Accessed via: pubmed.ncbi.nlm.nih.gov/30358739/

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HEAD SPACE FIVE MINUTES WITH KIDS FEEDING SPECIALISTS’ CLINICAL PSYCHOLOGIST, MONICA SEKOWSKI A really important part of this whole feeding journey is getting the right diagnosis. It’s not enough to make the observation that “this child is really anxious about choking and its getting in the way of their eating” when the anxiety is so extreme it impacts their functioning, and prevents them from doing the work they need to do with their feeding therapist.

If we’re seeing an anxiety-based mental health condition, we need to diagnose it so a child can receive the correct treatment. And so people can understand that this is not just “picky eating”, this rigidity is real and it’s very hard to shift.

One thing I really like to do is see the parent or

What families are saying BELLE’S MUM, EMILY TAYLOR

parents in isolation, for their own sessions, so I can

Belle was born at 27 weeks and was on oxygen

help them manage whatever is going on for them –

for six months – and with all of the tubes, suction

whether it be grief, anxiety or stress. Just upskilling

and general care in hospital, an oral aversion was

on how to manage those big emotions so they don’t

created. She would not take to breastfeeding or

show up as much in the feeding situation.

bottle feeding and had not eaten anything solid

All the research we have tells us that negative

until we met with Kids Feeding Specialists. We see

emotions around food and eating is one of the

the whole team once a month, with ongoing weekly

biggest contributors to food refusal. So we need to

support from Amanda and Simone as needed.

manage anxiety – both in parents and in children – to create good outcomes.

We’re able to sit with a family’s really heavy

During our first meeting, Simone said “we want to support the parents as much as we support the child”.

That meant so much to me because, for months, I felt

emotions, rather than trying to push them away and

like no one was listening to me in the hospital setting.

fix them. It’s really important that a family feels heard,

Simone suggested changes to Belle’s enteral feeding

listened to and validated before they can move

regime and immediately, her frequent daily vomiting

forward and do the really hard stuff they need to do.

ceased. Belle has now been weaned from her tube

And this is really hard, anxiety-provoking stuff.

feeding and her love for eating is growing every day.

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PROFESSIONAL PERSPECTIVES

ALYSIA’S MUM, ANNA DALIANIS Alysia has Rett syndrome and has been PEG-fed since she was three years old. She was also eating orally up to the age of 13, when she had her spinal fusion. Since then she’s been fully tube-fed and was having problems tolerating her formula. Alysia started to vomit after each feed and was crying and very unsettled both day and night, so I contacted the Kids Feeding Specialists team and Simone advised us to start blended foods.

We tried breakfast first and within two days, the vomiting stopped. We then started on blends for dinner and it’s been fantastic. Alysia has been so happy. She loves the Greek food I cook!

CHARLOTTE’S MUM, SARAH MATTHEWS You don’t want to feel like your child is just another patient, just another number. My goal as a parent is to surround Charlotte with a team of superstars who are genuinely invested in making her life better. And as soon as we met Simone, she was clearly one of those people. Her team is actually interested in and genuinely cares about complex children.

Charlotte was born with a rare genetic condition called Cockayne syndrome and requires blended tube feeds to optimise her growth. It would be easy to go into Charlotte’s sessions and focus entirely on her tubefeeding and growth, but Kids Feeding Specialists is more holistic than that. They make the space and time to say, “hey, how are you going? How are you dealing with this at the moment?” It’s about the family as a whole as opposed to just the professional piece around Charlotte’s diet.

To families who are new to this experience, I’d say take the time to find those superstars. Be ruthless. Move on, if you need to, from therapists that aren’t there to support you in the way that you need. And once you find that A-team, hold on to them for dear life!

This story was made in partnership with Kids Feeding Specialists.

For more information about their multidisciplinary offering and to connect with the team, head to kidsfeeding.com.au

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Let’s Talk Lingo Psst… is that really a PEG? Children’s Nursing Queensland founders Natalie Gentile and Lisa Gyselman help us get tube-feeding fluent.

ARTWORK // KATHRYN LEAN

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PROFESSIONAL PERSPECTIVES

A

s stomal

Surgical gastrostomy

So, why does it matter what we call

therapists and

A laparoscopic surgical approach

them? They do the same thing… right?

paediatric

(often keyhole surgery) to insert

Well, they are all designed to deliver

nurses, we have

a gastric feeding tube into the

nutrition to the body, but their use

lots of success

stomach. The stomach is brought

and care can be very different.

managing

up to the abdominal wall and

leaking devices,

sutured in place to create a stoma.

device, due to misunderstanding

healing broken skin, recommending

A low-profile device is placed in

the procedure used to insert the

products and ensuring correct sizing

the stoma for feeding.

tube, can cause big issues. This

Providing incorrect care of the

is particularly true for the post-

of tube-feeding devices. However, we regularly have issues knowing if our

Nasogastric tube (NG or NGT)

operative period and through the first

clients really have a PEG, or not!

A thin tube is placed through the

six months after the initial procedure.

“PEG” is a term often used to

nose, down the oesophagus and into

Someone describing a jejunostomy

describe all feeding buttons when in

the stomach for feeding. The tube is

as a “PEG” increases the risk of

reality, it describes only one way of

taped in place on the face.

feeding issues – and the stoma itself is likely to be prone to different

inserting a feeding tube.

We’ve put together a short, non-

Jejunostomy (Jej or J)

complications.

exhaustive list of tube-feeding

A laparoscopic surgical approach

A PEG is more likely to experience

terms which may help with a more

(often keyhole surgery) to insert a

things like buried bumper syndrome or

accurate description of what you

gastric feeding tube into the jejunum

hypergranulation, while laparoscopic

or your child has. Here goes:

(part of the bowel). The jejunum is

gastrostomies generally have a higher

brought up to the abdominal wall

risk of mucosal prolapse.

Percutaneous endoscopic

and sutured in place to create a

gastrostomy (PEG)

stoma. A low-profile device or

terminology right – especially when

A method of insertion for a

longer tube is placed in the stoma

clinicians get it wrong, too. But in the

gastric feeding tube into the

for feeding.

spirit of promoting safe care, we’d

It can be hard to get the

strongly suggest getting familiar with

stomach. It’s often performed by a gastroenterologist in a two-step

Gastrojejunostomy (GJ)

– and fluent in – your or your loved

procedure and involves inserting a

An endoscopic procedure to insert

one’s feeding tube.

feeding tube endoscopically (through

a feeding tube into the stomach that

the mouth). The tube is then pulled

also has a longer ‘tail’ that passes

out of a hole (stoma) that is made in

into the jejunum (part of the bowel).

cnqld.com.au

the stomach.

The double access points allow for

@childrens_nursing_queensland

a combination of stomach and jejunal feeding or medication

Children’s Nursing Queensland

administration. The device often requires a general anaesthetic for placement or changing.

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The Business

Meet three entrepreneurs charting new territory in the commercial blended whole-foods space, each from their own corner of the globe, all inspired by their tube-feeding child.

INTERVIEWS // MELANIE DIMMITT

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Line Pedersen

Founder of Bellyfood, DENMARK When did tube-feeding first become a part of your son Otto’s life? Otto was 13 months old when he got his feeding tube. This time of his life was, without doubt, the most sorrow-filled period in my life. Otto had several diagnoses and more kept coming. When he got his feeding tube, I remember thinking: “My kid is now so sick that he cannot even eat.” That said, the feeding tube was necessary and, after a while, we were happy that we didn’t have to spend hours struggling and forcing him to eat by mouth.

How did you discover the option

Why was Bellyfood a business you

they are shelf-stable. In the

of blending real food for Otto?

needed to create? In our network

beginning, our main focus

Otto was not thriving on the synthetic

we had quite a few parents that

was to develop ready-to-eat

commercial formulas. When asking

wanted to do blended food for

meals for tube-feeding but

our healthcare professionals for help,

tube-feeding but none of them

over the years we’ve written

the only advice we got was to give the

had the knowledge or the energy

articles and developed our

formula over a longer period of time or

to develop recipes and prepare the

Bellyfood platform that contains

give less of it with more calories. None

food. At that time I decided that

tips and tricks, information on

of that advice helped and in the end my

everyone with a tube – no matter

equipment, stories from people

husband and I did our own research.

what background – should have

who have a tube, recipes and

We got inspired by the community in

access to healthy, organic, real-

much more. I’m proud that we

international groups and, when Otto

food blended meals.

chose to develop this database of knowledge and today it

started having blended real food, his vomiting stopped almost immediately.

How has Bellyfood developed

means almost as much as our

since you got started? I founded

products.

Bellyfood in 2019 and so much has happened since then. Our first meals were frozen, today

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Q&A

What challenges have you come up against as a maker of realfood blends in the enteral feeding market? First of all the regulation, which has been written for products consisting only of food isolates/ powders. Secondly, not a lot of healthcare professionals have been taught about real-food tubefeeding. In our experience, those who are aware of it had heard that it is unhygienic and not safe.

It’s one thing to develop a product in a niche category with limited knowledge – and quite another to

What are your hopes for the future

re-educate an entire industry.

of Bellyfood? I hope we can provide

Relatives, communities and tube-fed

even more diversity in the food that

people have raised their voices and

we offer people with a feeding tube.

we are seeing a positive change in

They should have the opportunity to

what is recommended in Denmark.

choose between different meals – as

Today, communities for

all other people do.

blending food for tube-feeding

Also, I hope that real-food tube-

are growing rapidly and recently,

feeding in general will be recognised

the largest hospital in the country

as an equal – and even better –

published a book on how to make

opportunity for people with a feeding

blended tube-feeds. This is a huge

tube. Real food is for real people and

acknowledgment.

should be a first choice.

It’s one thing to develop a product in a niche category with limited knowledge – and quite another to re-educate an entire industry. bellyfood.dk @bellyfood.dk Bellyfood.dk

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Gareth Birkett Founder at Wilbo’s Blends, UK Why was blended real food the

formula felt quite natural – and we

At what point did you start to build

right option for your son, William?

then moved on to a Ketogenic diet to

your business, Wilbo’s Blends?

William had very complex needs from

try and manage his seizures.

William really began to thrive

birth but feeding was perhaps one of

As William reached an age where

when he started with real food and

the most stressful. He failed to gain

most children would be eating real

as a result, I became incredibly

weight and was given an NG tube due

food orally, I was unpacking boxes

passionate about the blended diet

to failure to thrive. His diagnosis was

of formula and had a moment of

and was meeting more people in

unclear and we were just trying to get

realisation that I wouldn’t consider

similar situations. I also started to

through each day and meeting multiple

this okay for myself or anybody else

experience and understand the

specialists as his condition changed.

as the only ‘food’ I had for every meal.

many barriers that existed to using

For feeding, commercial formula

I then started researching

a blended diet.

through a pump was presented as the

alternatives, discovered the real-food

only option and, at the time, we did not

blended diet and very soon after this,

increase the awareness, access and

think about questioning the medical

we started introducing real food as

knowledge around the blended diet –

team. When William was a baby,

part of William’s diet.

although I was probably a little naive,

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I started Wilbo’s Blends to

FEATURE

at the beginning. I didn’t realise just what a big undertaking it was to get Wilbo’s Blends from a concept to something that delivered material change to the people that mattered to me.

Launching our meals was a great moment, but there were plenty of

William really began to thrive when he started with real food and as a result, I became incredibly passionate about the blended diet and was meeting more people in similar situations. I also started to experience and understand the many barriers that existed to using a blended diet.

times I didn’t think it would happen along the way. We are now involved

to change their attitudes and policy

in a number of projects working with

toward a blended diet. This has

dietetics services and I want to grow

clinicians, researchers and other

removed much of the professional

this and continue the work we do in

medical industry professionals to

resistance as many myths have

training other dietitians and medical

continue to make real food a real

been dispelled.

professionals. I would also love to do

alternative for enteral nutrition.

We’re having more conversations

We have recently launched our

more research into the use of real

on ‘how’, rather than ‘if’, blended diets

food and how it can improve a wider

What are the biggest challenges

should be used. There’s still a huge

group of people’s health and wellbeing

you’ve come up against since

amount more to do – especially in

in the future.

launching into the enteral feeding

adult services – but I’m optimistic for

market? The biggest challenge is

the future.

change. While enteral feeding has

We have two new meals coming out very soon and I want to continue to expand the variety and create more

not changed for 40 years, healthcare

On that topic, what are your hopes

has changed dramatically. More

for Wilbo's Blends? Our main priority

patients are using enteral nutrition

right now is improving equity of

and for longer. Change in healthcare

access. We have been working for a

is slow and people are rightly

long time on getting Wilbo’s Blends

@wilbosblends

cautious, but anecdotal evidence for

prescribed on the NHS [National

the benefits of blended diets now has

Health Service] in the same way

Wilbo’s Blends

a lot of clinical research to support it.

commercial formula is today, which

We have seen professional bodies

would be a huge step forward, but

and healthcare institutions starting

we still have a long way to go here.

options. We certainly have plenty to do!

wilbosblends.co.uk

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When did your son, Lewis, start a real-food blended diet? By the time Lewis got a permanent feeding tube at age nine – after having multiple NG tubes across six years and being told he would “grow out of his eating issues” – I had that lived experience.

I was more empowered, as a medical mother and Lewis’s advocate, to push for what he needed.

I think if Lewis had had a permanent tube put in at three years old, when he had a stroke that impacted his eating, I would have done what I was told.

But after all of those years, I couldn’t comprehend why Lewis and his identical twin brother, Cohan, needed a different diet.

Why did you go that next step – or giant leap – to creating a real-food blend product? When you have a child who is medically complex, you do whatever we can to improve things for them. I often say that I don't have a medical background, but I have a PhD in Lewis. And for me, that passion to create a natural product started selfishly – for my son – because he needed it.

Sarah Thomas

Founder of Wholesome Blends, AUSTRALIA

I also knew that if Lewis needed this product, somebody else might too.

And I really wanted the community to come along on this journey with us.

In the very early days of Wholesome Blends, I had a booth at a kid’s disability expo to see whether or not parents wanted a real-food blend in a pouch. I discovered that they very much did – but what I didn’t

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expect was the flood of allied health

that decision. My focus was on

professionals who kept contacting

showing the community that I wasn’t

me after that expo saying, “when is it

a big pharmaceutical company just

going to be ready?”

trying to make money – I was one of

The big driver for me was – and

them and I was trying to help.

will continue to be – that I don’t ever

I am incredibly lucky, now, to

want anybody else to feel shamed,

have more support from tube-

scared and threatened for putting

feeding families and people than

real food through their child’s tube,

I ever thought I would have in this

like I was.

business. Our community gives me the confidence to not doubt myself –

What are the biggest business

and push for them.

challenges you’ve faced since launching Wholesome Blends?

What are your hopes for the future

The first major challenge was getting

of Wholesome Blends? We’re very

someone to make my products.

lucky to have the support of the NSW

When I would tell manufacturers that

state health system. Wholesome

I wanted them to create a product

Blends is a registered product on their

that had never been made before –

enteral-feeding contract and we’re

a food for special medical purposes

trying to secure more tenders across

with no need to focus on taste or

the country, within hospital settings

smell – they couldn’t understand why

and in the community with Home

someone would want to do that.

Enteral Nutrition (HEN) programs.

Because of the “medical” element,

We were also thrilled to win the 2024

manufacturers felt the risks were

Telstra Best of Business Awards for

too high and put it straight in the

Accelerating Women in Queensland.

My focus was on showing the community that I wasn’t a big pharmaceutical company just trying to make money – I was one of them and I was trying to help.

too-hard basket. I got 19 no’s and on

We’re going to continue to

the 19th one, I put my foot down and

advocate for the community and

challenged it. When I was able to get

educate clinicians and, since

face-to-face with that manufacturer

launching our blended-feeds

and explained what I was trying

cookbook, Blended: Sharing Recipes

to do, they understood and got on

for Love & Stories for Life, we’re

board. But it was trial and error for a

working on more recipes. It’s all

@wholesomeblendsau

long time.

about sharing information and

wholesomeblend

Then came the challenges from

knowledge. We want tube-feeding

the medical sector that, at the time,

families and people to be fully

wanted to stop this kind of product

informed so they can have a

being available in Australia. But I

choice about what they put in

knew, as the end user myself, that

their bodies, with the full support

the families had the power to make

of their medical teams.

wholesomeblends.com.au

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Recipes

This collection of recipes is brought to you by Blended: Sharing recipes for love & stories for life.

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Cohan’s Breakfast Smoothie Ingredients

Method

• • • • • • • •

1. Add all ingredients in order to a blender 2. Blend on high until smooth and creamy 3. Adjust the milk if you’d like a thinner consistency and consume immediately

200g 50g 20g 50g 50g 170g 50g 400ml

Greek yoghurt Rolled oats, uncooked – ground Medjool dates (pitted) Avocado Frozen mixed berries Banana (frozen is fine) Flaxseeds, ground Full cream milk

Total 1002g

Nutrition Information Average quantity per 100ml Calories

Fat

Saturates

Sugars

Sodium

Protein

Carbs

Fibre

119 cal

5.3g

1.7g

8.4g

32mg

4g

12.3g

2.9g

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Sarah’s Chicken Broth Ingredients

Method

• • • • • • • • •

1. Collect leftover greens and veggie scraps and put in freezer until needed for broth 2. Preheat oven to 220°C 3. Coat chicken frames in olive oil and roast in oven until golden 4. Add all veggies, herbs and salt to a large slow cooker 5. Add up to 4 litres of water to veggies and herbs 6. Add cooked chicken frames, including juices from the pan 7. Add apple cider vinegar 8. Replace lid and allow to cook on low for 12 to 24 hours (the longer, the better) 9. Once cooked, allow to cool 10. Strain cooled broth into a large bowl or jug 11. Portion into sealable plastic bags or freezerproof containers 12. Thaw and use as desired

• • • • • •

700g 4-6 1/3 cup 2 large 4 medium 4 stalks 700g 400g Handful

5 stalks 1 bunch 1 bunch 2 tsp 4 litres ½ cup

Left-over food scraps, frozen Chicken frames, organic, cooked Olive oil Brown onions, with skins Carrots Celery Broccoli, heads and stalks Pre-washed spinach Sweet potato skins, cooked or uncooked Rosemary Thyme Parsley Salt Water Apple cider vinegar

Makes 3-4 litres, depending on cooking duration.

Nutrition Information Average quantity per 100ml Calories

Fat

Saturates

Sugars

Sodium

Protein

Carbs

Fibre

119 cal

5.3g

1.7g

8.4g

32mg

4g

12.3g

2.7g

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Liam’s Enchiladas Ingredients Beef mixture • 15ml • 40g • ½ clove • 350g • 1 tsp

Sauce Mixture 1. In the same pan, add the rest of the olive oil and gently heat 2. Add the sliced red onions and garlic, cooking for about 2 minutes or until softened 3. Stir in the passata, cumin, coriander, and paprika.

Let the sauce simmer for 4–5 minutes

Olive oil Red onion sliced Garlic Beef mince lean Taco seasoning

Sauce • 180ml • ½ tsp • ½ tsp • ½ tsp

Passata Cumin, ground Coriander, ground Smoked paprika

• • • •

Tortillas (approx. 4 small) Cheese tasty, grated Spring onion, raw, chopped Sarah’s Chicken Broth (for blending)

80g 50g 5g 250ml

Method Beef Mixture 1. Preheat the oven to 180°C 2. Add half the olive oil to a large non-stick frying pan over low heat. Add the sliced red onions and stir for 1 minute. Then add the minced garlic and stir for another minute until combined 3. Increase the heat to high and add the beef mince, stirring regularly to break it up. Cook for 5–7 minutes or until the mince is cooked through 4. Sprinkle in the taco seasoning and cook for an additional 2 minutes, stirring to combine Remove the beef mixture from the pan, but leave any remaining oil in the pan.

Assembling the Enchiladas 1. Lightly spray an oven dish with olive oil 2. Take a tortilla and spoon a quarter of the beef mixture down the centre. Roll to enclose the filling, placing the seam side down in the dish 3. Repeat with the remaining tortillas and beef mixture 4. Pour the sauce mixture over the top of the tortillas and sprinkle with cheddar cheese 5. Bake in the oven for 15 minutes or until the cheese has melted and the enchiladas are heated through 6. Once cooked, remove from the oven and sprinkle with fresh coriander and spring onions To Blend For a blended consistency, add all ingredients to a blender but remove half of the tortilla shells. This will help maintain a consistent texture. Add more tortillas if you prefer a thicker blend.

Total 1005g or 4 single Enchiladas.

Nutrition Information Average quantity per 100g Calories

Fat

Saturates

Sugars

Sodium

Protein

Carbs

Fibre

137 cal

7.8g

3.4g

1.4g

324mg

10.4g

6g

1g

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Sarah’s Roast Cauliflower & Chickpeas Ingredients

Method

• • • • • • • • • • •

1. In an oven preheated to 220°C, toss cauliflower and chickpeas with olive oil, garlic, smoked paprika, cumin, chili powder and lemon juice. Roast for 20 minutes or until tender and lightly golden. Allow to cool 2. In a high-powered blender, add roasted ingredients including juices from pan, coriander, avocado, chicken broth. Blend until smooth and creamy

350g 180g 70ml 1 5g 3g ½ tsp 20 ml 20g 100g 250 ml

Cauliflower Chickpeas Extra virgin olive oil Clove garlic (crushed) Smoked paprika Cumin ground Chili powder Lemon juice Fresh coriander Avocado Sarah’s Chicken Broth

Makes 3-4 litres, depending on cooking duration.

Total 1000g

Nutrition Information Average quantity per 100g Calories

Fat

Saturates

Sugars

Sodium

Protein

Carbs

Fibre

116 cal

8.6g

1.4g

1.6g

126mg

2.7g

5.5g

2.9g

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Lewis’s Chicken Laksa Ingredients

Method

• • • • • • • • • • • • • • •

1. Prepare the Laksa base: Heat the peanut oil in a large pan over medium heat. Add the garlic, turmeric, and laksa paste. Sauté for about 1 minute until aromatic 2. Simmer the soup: Pour in the chicken broth, coconut cream and soy sauce. Bring the mixture to a boil, then reduce heat to low and simmer for 5 minutes 3. Prepare noodles: While the soup is simmering, cook the Udon noodles as per package instructions. Be careful not to overcook them, especially if using fresh noodles 4. Add vegetables: Add the bok choy to the soup, cooking for another 2 minutes 5. Gently add in pre-cooked Udon noodles, cooking for another 2 minutes. Stir in the lime juice just before removing from heat 6. Serve: Ladle the laksa into bowls and top with boiled egg, bean sprouts, spring onions and fresh coriander.

Serve with a lime wedge on the side

15ml ½ ½ tsp 2 tbsp 300ml 120ml 10ml 20g 200g 250g 1 large 5g 5g 10g 5ml

Peanut oil Clove garlic, minced Turmeric powder Laksa paste, store bought Sarah’s Chicken Broth Coconut cream Soy sauce Bok choy, chopped Udon noodles Chicken breast, raw Boiled egg Bean sprouts Spring onion, chopped Fresh coriander leaves, chopped Fresh lime juice

Add required portion to blender and high powered blender and blend until desired viscosity is reached.

Remember, the longer the noodles are left in the laksa broth, they will absorb the liquid, so add more chicken broth if needed.

Serves 3, Total 1000g Nutrition Information Average quantity per 100g Calories

Fat

Saturates

Sugars

Sodium

Protein

Carbs

Fibre

117 cal

6.2g

3g

1.1g

345mg

8.7g

6.3g

1g the blend.

123

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Sarah’s Pork Stir Fry Ingredients

Method

• • • • • • • • • • • • •

1. Heat olive oil in a large pan over medium-high heat.

Add the sliced pork and red onion and cook until browned, about 5–7 minutes 2. Remove the pork and set aside. In the same pan, add the brown rice, baby corn, broccoli, carrot, capsicum, snow peas, and until tender-crisp, about 3–4 minutes.

3. Add the pork back to the pan along with the soy sauce, hoisin sauce and sesame oil. Stir for another 2–3 minutes 4. Allow the mixture to cool slightly, then transfer to a blender with the coconut milk

20ml 300g 30g 100g 30g 50g 30g 40g 30g 1 tbsp 3 tbsp 15 ml 300 ml

Olive oil Pork loin, thinly sliced Red onion Cooked brown rice Baby corn Broccoli florets Carrot, thinly sliced Capsicum, thinly sliced Snow peas, thinly sliced Soy sauce Hoisin sauce Sesame oil (optional) Sarah’s Chicken Broth to blend

Add required portion to high powered blender and blend until desired viscosity is reached.

Total 1004g or 3 serves

Nutrition Information Average quantity per 100g Calories

Fat

Saturates

Sugars

Sodium

Protein

Carbs

Fibre

120 cal

7.3g

1.8g

2.4g

338mg

7.6g

5.7g

1.2g

Find the cookbook at wholesomeblends.com.au

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Tubie Picnic PHOTO SERIES

If you go down to the park today, you’re sure of a big surprise If you go down to the park today, bring your tube-feeding supplies For every kid with tubes and cheer, Will gather ’round to eat right here, Today’s the day the tubie gang has their picnic.

PHOTOGRAPHY // DEBI BRETT FOR TUBIE FUN AND AVANOS

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(L-R) Megan Frew, Portia, Eliana Joseph, Luke & Leah

Katelyn Wood & Austin

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Portia

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Q&A Leah & Luke

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Luke

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tb.

Directory

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DIRECTORY

1. Tubie Fun

1.

We are an Australian owned and operated, award-winning family business celebrating a different way of feeding. Through walking the same journey with our tube-feeding child, we know first-hand the highs, lows and everything in between that this lifestyle brings. It’s our mission to provide the tube-feeding community with a wide range of high-quality products that are both fun and functional. We want to help children and adults who tube-feed feel confident and express their personalities – all while normalising this wonderful way of feeding. tubiefun.com.au

@tubiefunau

Tubie Fun

2. FreeArm Tube Feeding Assistant Misti and Will Staley created a ‘helping hand’ for tube-feeding their son, Freeman. The FreeArm holds gravity syringe meals and pump meals to make eating at home, hospital or on-the-

2.

go a breeze. The FreeArm bends up easily for travel, frees your hands, takes the place of an IV pole and is NDIS purchasable through Tubie Fun, Surgical House, InterMed Medical and more! amslmedical.com.au/pages/freearm-muscle @freearm.tube.feeding.assistant

FreeArm

3. Wonsie Wonsie specialises in larger-sized cotton bodysuits for kids and adults. We are committed to providing quality, practical clothing solutions for people with a variety of needs and have a bodysuit range which is designed specifically to assist easy tube-feeding access. Our range also includes adaptive swimwear, incontinence

3.

aids and bedding protection. Our goal is to provide products which give peace of mind and help make daily life a little easier for all families. We offer worldwide shipping and are a registered NDIS provider. wonsie.com.au

@wonsie

@WonsieKids

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4. Wholesome Blends Wholesome Blends is Australia’s leading provider of blended whole-food options for tube-fed children and adults. Our nutritious, all-natural and high-calorie meals are shelfstable, meaning they don’t require refrigeration for storage.

4.

They’re free from dairy, soy, nuts, eggs, GMOs, added sugars, preservatives and additives. Made with love by a tubefeeding family for other tube-feeding families, Wholesome Blends offers four convenient varieties, making it easier for families to access a healthy, blended whole-food diet.

As the business grows, we’re thrilled to announce that Wholesome Blends will be evolving into Blended by Sarah, bringing even more passion and care to our products. wholesomeblends.com.au @wholesomeblendsau

5.

Wholesome

5. Kate Farms Pediatric Blended Meals Kate Farms believes that nutrition is the foundation of health.

That’s why they created Pediatric Blended Meals: wellbalanced, nutrient-dense meals made with whole foods, pea protein, and vitamins and minerals. Pediatric Blended Meals provide you with less mess and no fuss compared to making blended meals at home and delivers plant-based nutrition. The resealable meals are made with similar care, love and attention that parents put into the meals they make at home. Pediatric Blended Meals are compatible with certain tube feeding adapters, allowing high-quality nutrition to flow smoothly through feeding tubes with little to no manipulation.

Kate Farms products are only available in the United States.

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katefarms.com Kate Farms

@katefarms

@kate_farms

Kate Farms

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6. ABBOTT nutrition products Abbott is a leading provider of home enteral nutrition. The Abbott Homecare Connect service is dedicated to ensuring a seamless transition from hospital to home for patients nationwide. Their highly skilled team of Clinical Nurse Educators delivers unparalleled care, prioritising safety, quality, reliability and connection. With a focus on patient wellbeing and dignity, Abbott Homecare Connect provides individuals with exceptional nursing support which empowers them to maintain their independence and confidence. abbotthomecareconnect.com.au

7. Real Food Blends Real Food Blends is a ready-to-feed, 100 percent real-food option for people with feeding tubes. Enjoy nutritional variety with eight different meals and one snack made with real protein sources, fruits, vegetables, whole grains and fat sources.

Each pouch is made of five to eight ingredients, that’s it! Available in the US only. realfoodblends.com

@realfoodblends

realfoodblends

@RealFoodBlends

8. WHOLE Enteral ENRICH is a nutritionally formulated meal replacement and the debut product of WHOLE Enteral, the business baby of tubie Mum, Ali Howell, and speech pathologist Dr Emily Lively. Plant-based, free from nuts, soy, dairy, eggs and gluten, ENRICH can be enjoyed by adults and children with a range of digestive challenges. Being ready-made, shelfstable and nutritionally balanced, ENRICH is perfect for home, holiday, school or hospital use. whole.net.au

@whole_en

@whole.en

9. Functional Formularies Functional Formularies offers organic, plant-based, whole food nutrition to those who need it most. Our adult and paediatric blenderised formulas are designed for tube feeding but can also be used as oral meal replacements.

Each pouch is made with a variety of whole-food ingredients chosen for their unique ability to form a well-balanced, nutritionally optimised tube-feeding formula. Explore our range of formulas and experience the difference that high-quality, whole-food nutrition can make! functionalformularies.com FunctionalFormularies

@functionalformularies

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@functionalformularies

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10. Boon Grass Drying Rack This widely used and loved bottle drying rack just happens to work a treat for syringes and other bits of tube-feeding kit. You can buy the Boon Grass Drying Rack from several retailers. Helpful hack: Dry your syringes tip-down on this one.

11. Blended: Sharing recipes for love and stories for life Created by Sarah Thomas, the founder of Australia’s beloved Wholesome Blends products, Blended is a celebration of family, flavour and health. As Wholesome Blends evolves into Blended by Sarah, this cookbook reflects Sarah’s continued passion for nourishing meals that bring people together. Inside, you’ll find Sarah’s personal favourites, expert contributions from dietitians and chefs and treasured family recipes. With tips, tricks and heartwarming stories, Blended makes it easy to enjoy

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the joy of home blending while celebrating the love and connection that food brings to our lives. wholesomeblends.com.au

@wholesomeblendsau

@wholesomeblend

12. Blended Tube Feeding Recipe Book If you’re new to blenderised tube-feeding and aren’t sure where to start, this ebook is for you! Inside this offering from Hilarie Geurink you’ll find 18 dietitian-created, high-calorie recipes with directions for how to easily swap out your formula for these nutritious, blended meals. You’ll also find lots of helpful advice on how to prepare, store and consume the blended meals. blendedtubefeeding.com

GET IN TOUCH 10.

Want to feature in The Blend directory next issue? melanie.dimmitt@gmail.com

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13. Your Tube This comprehensive book from dietitian Lina Breik adopts a reader-friendly approach by demystifying nutrition jargon and presenting tube-feeding in an accessible manner. Its goal is to bridge the gap between you and your feeding tube, empowering you to understand and discuss your nutritional needs effectively with your care team. tubedietitian.com

TubeDietitian

14. The Original Natural Tube Feeding Recipe eBook Dietitian Claire Kariya shares 20 tried-and-tested blended meal recipes, each with their own nutritional information, in this photo-filled, downloadable ebook. naturaltubefeeding.com

@naturaltubefeeding

15. Easy Follow Easy Swallow: Transitioning off a PEG tube back to oral eating

@naturaltubefeeding

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This recipe book is the work of trained chef and head and neck cancer survivor Yvonne McClaren, who you can meet in Issue One of The Blend. yvonnemcclaren.com @yvonnegracemcclaren @nofeedingtubes

16. The Abilities in Me: Tube Feeding

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Written by medical mama Gemma Keir, this kids’ picture book follows the story of a young girl, inspired by the UK’s Chanel Murrish, who’s had an NG, PEG and MIC-KEY button. theabilitiesinme.com @theabilitiesinmebookseries @theabilitiesinmebookseries

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Photography: Debi Brett for Tubie Fun and Avanos

The Blend magazine is an independent publication Founder and editor Melanie Dimmitt melaniedimmitt.com.au Creative director Edith Olsen Published by Printcraft Pty Ltd Legal stuff No part of this publication may be reproduced by any means without prior written permission of the editor.

Views expressed within The Blend magazine are not necessarily those of the editor. theblendmag.com

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high protein in 100% real food

The only 1.6 Cal/mL, high protein ready-to-feed meals for tube feeding made from 100% real food with no synthetic ingredients.

SCAN TO LEARN MORE

realfoodblends.com/select Real Food Blends is only available in the United States.

Our new look with the same whole food natural values.

Made by our family for your family.

wholesomeblends.com.au

16/121 Newmarket Rd, Windsor, QLD 4030, Australia Email: admin@wholesomeblends.com.au