Like countless people around the world, Melissa Ward’s son eats – and thrives – by tube-feeding. Here, Melissa shares how it feels to see this way of eating used in a “threat-based campaign” to encourage people to quit smoking.
Recently, while washing up after dinner with the TV on in the background, my eye was caught by a woman on screen, tube-feeding at the family dinner table. Excited to see representation of the way my son feeds in mainstream media for the first time, I rushed up to the TV for a closer look. I was, however, disappointed to find that I was looking at an anti-smoking ad. Part of Cancer Institute NSW’s ‘16 Cancers’ Tobacco Control Campaign.
“How dare they paint tube-feeding like it’s the end of the world,” I thought.
Image: A still from Cancer Institute NSW’s ‘16 Cancers’ Tobacco Control Campaign
Four-and-a-half years ago I gave birth to premature twin boys. We would come to discover that one of my little guys – let's call him Harvey – has 18q- syndrome, a rare genetic condition resulting in both physical and intellectual disability. He is 100 per cent tube-fed and has been since birth. Harvey has no ability to suck, chew or swallow, and tube-feeding has saved his life.
The boys spent seven weeks in the neonatal intensive care unit before they were strong enough to come home. A nasogastric (NG) tube – which travels through the nose to the stomach – was given to both boys immediately because, at 33 weeks, a baby has not yet developed its sucking reflex.
Image: Melissa Ward and her family
Those tubes kept my babies alive and well – and I was grateful. Yet at the same time, it was traumatic. It was seven weeks of trying desperately to teach these babies to suck so they could feed and grow and come home. At about the three-week mark, the discharge nurse informed me that Harvey would be going home with his NG tube.
At the time I was terrified – horrified even. I couldn’t take a baby home with a feeding tube. What was she thinking? Babies don’t feed with a tube. They suck, and my baby was going to learn how to suck.
He never did.
Still I persisted, for months, determined that he would suck. Then at six months old, when he still couldn’t suck, I was determined that he would eat orally. I persisted through the coughing and the spluttering, through the hours-long feeding times, endless reflux and constant feeding clinic visits. Until one day it dawned on me that it didn’t matter if Harvey was breast-fed, bottle-fed or tube-fed. Just that he was fed. That he was alive and I could hold him in my arms and love him.
Image: Melissa Ward and her son
I wish I could have realised this sooner, that I could have saved both Harvey and myself from the trauma and the exhaustion and the pressure of having to feed orally. But I couldn’t have, because before Harvey, I didn’t even know that tube-feeding was a thing. It was something scary and unknown because tube-feeding, like most disability-related things, is not represented in mainstream media.
And when it is, it's in ads like this, that feature a person who tube-feeds sitting at the end of the dinner table, cut off from their family’s conversation, looking miserable.
I can only imagine what watching this campaign would feel like as a person who tube-feeds, like disability advocate Steph Tompkin. In an interview for an upcoming issue of The Blend magazine, Steph said that even when she was very unwell and couldn’t eat, have a social life or do everything that her friends were doing, “I wasn't sitting at a table like, ‘Oh, I have to sit and watch everyone eat’”.
“Your family doesn’t do that if that’s what you’re going through,” says Steph. “Why paint it out to be the worst thing in the world?”
Image: Steph Tompkin
In reality, the majority of people who tube-feed do not have cancer. So says Lina Briek, whose Victorian community-based business, Tube Dietitian (which is independent of any acute hospital service) supports clients in this cohort – “83 per cent of whom are healthy, and have neurological or genetic conditions.”
Image: Lina Breik
The NSW Tobacco Control Campaign uses tube-feeding in “a threat-based and graphic style campaign that encourages people who smoke to quit”. It portrays tube-feeding in an exceptionally negative and depressing light. As if a person who tube-feeds does not have a life worth living.
Let me assure you that this is not the case. Harvey lives a full and happy life thanks to his tube. He is loved by his parents and three siblings. He loves music – especially Billy Joel – being outside and going swimming. He goes to daycare along with his siblings, where he is thriving, making friends and, like most preschoolers, coming home covered in sand. His educators have embraced his tube-feeding and Harvey is just one of the class.
Tube-feeding is not the end of the world. It is a gift. Of course, campaign to get people to quit smoking, but don’t do it by dehumanising the lives of people who tube-feed.
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Hireup approached Cancer Institute NSW for comment and a spokesperson replied:
The 16 Cancers campaign, initially developed by Cancer Council WA, is one part of our overall media campaign activity and programs to address smoking in NSW.
The campaign highlights the range of cancers and health impacts of smoking. It is an emotionally intense and graphic style campaign that aims to encourage people who smoke to consider the effect it could have on themselves and their family.
Smoking has been linked to up to 16 different types of cancer, and the campaign focuses on the distress of a cancer diagnosis and the devastating impact that cancer caused by smoking can have on the quality of life of a smoker (long before old age) and their family.
The Cancer Institute NSW appreciates that due to a range of health conditions, many members of the community are able to live full and happy lives thanks to the life-saving benefits of tube feeding. We apologise if the 16 Cancers campaign’s depiction of tube feeding has caused offense or distress.
The 16 Cancers campaign has been licenced for use in NSW on three separate occasions since 2016, with the current license due to expire at the end of June 2023. The Cancer Institute NSW will carefully consider all community feedback when evaluating the future of the campaign.
If you would like to share your thoughts on the NSW Tobacco Control Campaign, you can reach the team behind it directly at CINSW-Prevention@health.nsw.gov.au.
Melissa Ward
Melissa is a busy mother to two sets of twins including one complex yet gorgeous little man. Melissa is determined to ensure that her little man feels like he belongs in the community and has the same opportunities as his siblings.