ausEE Inc. is promoting Australia’s Feeding Tube Awareness Week which is held nationally 3 – 9 February 2019. There are many reasons why children or adults may require a feeding tube. Fatima was diagnosed in utero with a rare chromosomal disorder called Prader Willi Syndrome (PWS) and because of this when she was born September 2016, she couldn’t suck or swallow. She had a nasogastric tube (NG) inserted soon after her birth, which is a tube that is put up the nose and down into the stomach and is mostly used for short term tube feeding. Tube feeding, also called enteral nutrition, is a way food or formula can get into your body if you are unable to eat or unable to eat enough. Food in liquid form is given through a tube into the stomach or small intestine.
It is just another way of eating and for some people it is because of this they are still alive."
Reema, Fatima’s mum
Fatima, Credit: https://www.123smilephotography.com/
This photo was taken for Fatima’s 2nd birthday to celebrate her achievements and what better way than to bring out the superhero in her.
Sarah Gray, ausEE president says:
Feeding Tube Awareness Week (FTAW) 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."
At 11 months old Fatima was diagnosed with severe failure to thrive weighing at a teeny tiny 4.65 kg having not gained any weight in over 4 months. Following Fatima had a PEG (percutaneous endoscopic gastrostomy) inserted, this is when a feeding tube is placed in the stomach during a surgical procedure. Fatima is now 2.5 years old and although she is still classed as having failure to thrive she has made steady gains since having the PEG inserted and now weighs 9kg.
Fatima’s mum, Reema says:
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."
ausEE Inc. is the National charity for eosinophilic gastrointestinal disorders, just one condition that may
require a patient to have a feeding tube to meet their nutritional needs.
This week is about bringing everyone in Australia together who has a feeding tube, whatever the reason may be."
For families living with feeding tubes they can find out about support groups and resources available to help them on their journey on the FTAW website: www.feedingtubeaware.com.au