Feeding Tube Awareness Week – Meet Jack

Food in liquid form, formula, fluids and medicine can be given through a tube into the stomach or small intestine.

Living with a feeding tube can be an overwhelming adjustment for patients and families, bringing with it many challenges and emotions.

For two-and-a-half-year-old Jack and his mum, Amy, the journey has had its share of ups and downs but is one that hasn’t stopped Jack from living a full life.

“Jack is a cheeky and fiercely independent little boy who smiles at everyone he meets. He’s the bravest person I’ve ever met,” says Amy, whose son has received ongoing care at the Women’s and Children’s Hospital (WCH).

After being diagnosed with dysphagia, a swallowing condition that causes fluid to enter his lungs, Jack had a feeding tube inserted at five months old. His condition is one of hundreds where day-to-day tube-feeding may be required to maintain adequate nutrition levels.

Since initially using a Nasogastric tube, Jack now has a more permanent device, which is called a Gastrostomy tube, or G-tube that runs directly to the stomach via the abdominal wall.

And while this busy ball of energy has overcome many obstacles to become a thriving toddler, the transition has not always been easy for the family.

“Initially tube feeding was extremely overwhelming and seemed to 'take over' our lives,” says Amy.

“We had to learn a lot fast and his feeding schedule, along with all the medical appointments and tests, were quite relentless.”

But throughout the many visits to the WCH “The staff have always made us feel safe and 'at home' during our many visits and stays. We are so grateful to everyone who has cared for not just Jack, but also our family when we've needed extra support and comfort through some of our toughest days. “

Two years later and it’s now more of a logistical juggle for Amy, while also managing the energy of Jack and his big brother James.

“We need to take extra supplies everywhere we go and be careful not to pull on it accidentally. For Jack, it slightly limits his ability to rough and tumble and it can become infected and painful at times.”

But through all the challenges they conquer, an ongoing battle for Amy has been educating others about the feelings associated with tube feeding and what it means to these families.

“I believe it's so important that we raise awareness and talk about feeding tubes so that we can celebrate differences and squash the associated assumptions”, she says.

“Jack's feeding tube is his lifeline and it keeps him safe. It helps him to thrive. We are extremely lucky that it has not impacted his life and we are so proud to say that it doesn't define him.”

Feeding Tube Awareness Week 2022 runs from 6-12 February 2022 with the aim to increase awareness and understanding in the community by raising some of the challenges faced and highlighting the day-to-day impact of tube feeding on individuals, carers and families.

For more information on tube feeding at home, download this guide from the Home Enteral Nutrition Service.

For more information on our Gastroenterology Department visit: https://www.wch.sa.gov.au/patients-visitors/children/medical-care/gastroenterology