Children who tube feed: success and joy at mealtimes

Short Pitch

Tube-feeding affects thousands of Australian children and is associated with hundreds of different serious, chronic health conditions such as cerebral palsy, cancer, congenital heart disease and genetic conditions.

Tube feeding stories and messages are a unique angle on childhood health and wellbeing in that they can positively affect children with a huge range of health issues.

Children who tube feed have more in common with each other at mealtimes than they do with other children who have their same health issue but no feeding difficulties. As a group, they not only represent a diverse range of health conditions but they affect and engage with their own siblings, families, friends and the community around them. Stories about children who tube-feed impact many people.

We would love to tell Anna and Emily’s story (details below) and share the tube-feeding animations we have created.

Research has shown that lack of recognition and visibility is a major challenge for these children and adversely affects their health and well being.

The SUCCEED Child Feeding Alliance has demonstrated experience combining high-impact stories with data to create positive change for these children.

SUCCEED is Australia’s first non-profit, research-driven child feeding collaborative, creating change for children by and with parents, clinicians and researchers.

There is an opportunity to consider different ways of feeding as it’s own metric of diversity, thus engaging with and sharing stories reflecting all children who have difficulties eating. The current conversations around food and meals, especially in childhood, focus on breastfeeding vs formula, obesity and advertising processed food to children. There is so much more to this space than just these conversations.

Children who tube-feed not only represent a diverse group of health conditions but they affect and and engage their own siblings, families, friends and the community around them.

Our goal is to use compelling stories to break down barriers for tube-fed children. Doing so will also enable us to educate the wider public, so that tube-feeding sheds its negative connotations, educating people to see beyond the tube and find the thriving, joyful child.

We want to encourage people to invite children who tube feed into their homes and set a place for them at the table. To let them know it’s OK. So that every family knows the simple joy of sharing a meal, and every child thrives.

Contacts

Contact: Dr Chris Elliot, General and Developmental Paediatrician. Email Chris
Story: Anna and Emily

Background

“People don’t feed their kids with their brain, they feed their kids with their heart, always”
Dr Chris Elliot, paediatrician

“Breast, bottle, spoon or tube – fed is fed, and fed is best.”
Hannah, parent

Feeding difficulties overall affect 30-50% of children in their early years. These can vary in severity and duration, from fussy or picky eating to life-long difficulties associated with chronic disease or disability. Around 80% of children with developmental delays experience feeding issues.

While we don’t know the exact number, we do know that thousands of Australian children have such serious health issues that they rely on tube-feeding in order to thrive.

Imagine having your beautiful child or baby at home and being unable to feed them except through a tube. In the place of joyous mealtimes you now are managing medical formulas, pumps, tubes and acid-testing strips. Some children will need a tube for weeks, months or years. Some will need a tube forever.

Images of children tube feeding are often used in child cancer communication, which has led the community to perceive that all children who tube-feed are sick and at risk of dying. This simply is not true. No matter why children have feeding difficulties, children who tube feed can thrive, play, participate and enjoy mealtimes.

One reason why tube feeding is a unique lens on children’s health and wellbeing is that no matter why your child feeds by tube, a family’s experience of mealtimes is very similar.

This makes support, encouragement and stories about childhood tube feeding relevant to an extremely broad community.

Anna’s story

Anna’s daughter Emily required long-term tube feeding due to a health condition that was diagnosed when she was a newborn baby. Over the long months of tube feeding Anna learned, or taught herself, all the skills she needed to help Emily thrive.

The kind of resourcefulness and courage that Anna needed is common amongst tube-fed families, as healthcare services are often not very well set up to support everything that families need.

Emily eventually had her tube weaned around the time that Anna became involved in SUCCEED.

Without any formal medical or research background, Anna’s experience in and passion for improving the lives of children who tube feed and their families has led her to becoming a senior member of the SUCCEED team. She has been named on national research grants, as co-author on a landmark international paper on tube feeding, and she has been instrumental in organising large community events like our inaugural Tube Feeding Picnic in 2019 (coming again in 2021!).

Anna will be part of the exciting new phase of SUCCEED in 2021 as we transition from informal collaborative to national child feeding not-for-profit organisation.

Anna was photographed by The Sutherland Leader in 2019 in a story about Dr Elliot’s feeding clinic, but her full story has not been told to date.

Anna shares part of her story at the inaugural Tube Feeding Picnic in 2019

Anna sharing her knowledge for childfeeding.org. This was an unscripted, one-take video shot with no rehearsal. We simply asked Anna to “show us how you tape Emily’s tube”, and this is what she did.

SUCCEED Child Feeding Alliance

SUCCEED was started in 2017 with a small pilot grant from Maridulu Budyari Gumal (also known as the Sydney Partnership for Health, Education, Research and Enterprise).

We are a diverse group of Australian families, clinicians and researchers aiming to change the world for children with feeding difficulties, especially those who are tube-fed.

We have achieved a lot in nearly four years, but the heart of our collaborative is a group of passionate individuals all working in our spare time trying to change the world. We enjoy working together, have big dreams and have seen first-hand the benefits this work can have to those who need it. This keeps us going, every day.

Our achievements to date include:

Creating www.childfeeding.org, Australia’s first online resource created through research, by and for families of tube-fed children.
A landmark international publication “Paediatric Tube-Feeding: an agenda for care and research” published with three parents as named co-authors (see below)

Australia’s first ever Tube Feeding Picnic 2019, featured on Channel 7 News

Australia’s first ever bilingual family-led feeding research project conducted with the Nepalese community in South Eastern Sydney, which led to the creation of the first ever online resource for families and clinicians in both English and Nepali: www.khushimeals.org
Ongoing world-first research into what matters to families, what they want and hope for from their healthcare, and understanding how healthcare can be brilliant for those who need it.
Short community-oriented animations aimed at improving awareness and acceptance of children who tube-feed (below).

Photographic exhibition Be Not Afraid of My Body – a collaboration between SUCCEED, photographer Kate Disher-Quill (author of Earshot, drawn from Kate’s personal experiences with hearing loss) and families of children who tube-feed. Be Not Afraid of My Body has been displayed at the International Convention Centre in Sydney and will be exhibited at the Sydney Children’s Hospital Randwick in winter 2021.
A video summary from 2019 shows other members of the original team and our vision for SUCCEED

A video from 2019 introducing our vision for SUCCEED and our founding members.

Short Animations Suitable for Children

Research Context

World-first research with families who tube-feed their children has identified a huge gap in healthcare and resources.

We know:

Tube feeding is not just about nutrition. It is a complex health problem affecting all aspects of a child and their family’s health and wellbeing, especially through isolation, discomfort and health risks at mealtimes.
There is a lack of awareness of ‘child feeding difficulties’ both professionally and amongst the general public.
Early days of tube feeding are especially daunting and confronting for parents.
Parents report very high levels of feeling distressed and isolated
With education, information and connection the intensity and/or duration of feeding difficulties can be reduced.