Feeding Tube Awareness Week (FTAW) — taking place Feb. 3-9 — is held worldwide to provide information about tube feeding and access to support groups and resources to patients and their families.
“This week is about bringing everyone in Australia together who has a feeding tube, whatever the reason may be,” Sarah Gray, president of ausEE, said in a press release.
When an individual is unable to eat or get enough nutrition, a feeding tube is used as a way to get food into the body. For tube feeding (enteral nutrition), a tube can be placed at different sites along the gastrointestinal tract. Liquid food or formula is used with tube feeding.
Several conditions may require a patient, whether it’s a child or adult, to use tube feeding, one of which is Prader-Willi syndrome (PWS), a genetic disease in which infants may have severe limitations in their ability to suck or swallow, due to low muscle tone.
A nasogastric tube placed through the nose into the stomach is one form of tube feeding that can help PWS babies get enough food and start gaining weight.
As part of the awareness week, ausEE has several programs that will help shed light on enteral nutrition and the daily challenges of those living with feeding tubes. One such program, called My Tubie Stories, will highlight the life stories of patients on tube feeding.
One of the stories focuses on a baby called Fatima who was diagnosed with PWS before birth. She had a nasogastric tube placed soon after birth due to low muscle tone and an inability to suck or swallow. Despite this, when she had failed to gain weight at 11 months old, she was diagnosed with “failure to thrive,” and the doctors surgically placed a tube directly into her stomach (percutaneous endoscopic gastrostomy, or PEG).
Fatima is now 2.5 years old, and although still considered in a failure-to thrive-status, she has steadily gained weight since the PEG procedure.
“Fatima has challenged me in many ways and has taught me so many things, and for that, I am so grateful. Having a feeding tube is nothing to be grossed out about nor is it something to be ashamed of. It is just another way of eating, and for some people, it is because of this they are still alive,” said her mother, Reena.
Several other stories on My Tubie Stories show how feeding tubes have given children a chance in life.
Some of ausEE’s available awareness resources include badges, a Facebook profile frame, an awareness week banner, and posters that can be shared on social media pages.
The nonprofit has also invited other organizations to join it and raise public awareness about tube feeding by sharing FTAW logos and the website on their social media and through their communications. There is no fee to join this partnership.
“Feeding Tube Awareness Week is an important week on our calendar when we ask everyone to come together to raise awareness for those living with feeding tubes and the day to day challenges they face,” Gray said.