These are just a few examples of the hurtful and patronising comments often aimed at children who have nasogastric (NG) tubes, and their parents.
“What’s wrong with him?”
“That’s disgusting!”
“You never know what medical science can do.”
The special tubes keep children, who are unable to eat normally, alive. They deliver food, fluid and medicine to the stomach via a tube in the nose.
Staring, pointing and rude comments from some members of the public can leave parents reluctant to take their children out.
But ABMU paediatric nutrition nurse Louise Heywood hopes to change these negative attitudes.
Working with some of the 85 families she supports, she has produced a video showing their children playing, painting, swimming, skiing and generally having fun to demonstrate they are no different to others.
The families hope the YouTube video will go viral.
Louise said: “Just because they are fitted with a tube it doesn’t mean they haven’t got normal and active lives.”
Seren Owen, 17, from Llanmorlais, Gower, has cerebral palsy and is in the video hurtling down a snowy mountain on a sit ski.
Mum Alison said: “My record is 48mph with her on a sit ski. They are just like other kids.”
Sarah Bowen’s son Zachary, five, from Neath, is also in the video.
She said: “It is important to get out there and to be seen and to normalise tube feeding.”
Both mums got involved in the video – which is made up of the families’ own pictures and footage shot specially in an adapted playground – because they have experienced thoughtless behaviour.
Seren and Zachary, pictured below, have now progressed onto PEG feeding, a tube that goes directly into the stomach through an opening in the abdomen so cannot be seen. But they were both the target for comments when they did have visible tubes.
Sarah recalled how once, when Zachary was lying in his pram wearing an NG tube, she experienced two separate incidents within minutes.
A man approached her while she was putting Zachary in the car outside Tesco and repeatedly asked what was wrong with him, not accepting the answer he was given.
Then she drove to Morrisons, where she was due to meet her mother.
Sarah said: “My son was lying in the pram, he was about 10 months old, and an older lady pointed her finger right in his face in the pram and said, ‘What is wrong with him?’.
“I said, ‘There’s nothing wrong,’ and she said, ‘Yes there is,’.”
Alison said she and husband Andrew have received many thoughtless comments over the years including: “You never know what medical science can do.”
And Louise said one of the families she helps had a very nasty experience in an Asda café when a man saw them tube feeding their child and said: “That’s absolutely disgusting. Why are you feeding your child that way?”
Alison said: “I think society is at a bit of a tipping point because when I was little we rarely saw people with a disability.
“We are the generation that have to be the teachers. It will change, but equally we have to accept that for change to happen we have to face the difficulties.”
Louise, who organises regular coffee mornings for the families she supports, decided to address the issue after hearing about the difficulties they were facing.
“I thought about a poster, but at the same time my husband and I had made a video for my parents’ 50thwedding anniversary. We got a lot of photos and we put it all together to music and I thought, why can’t we do something like that?
“We are never going to change the world overnight, but if we can keep chipping away we feel like we have done something to help.”
