Skip to content

For Perth mum-of-three Natalie Hevron, the word ‘gastrostomy’ is interchangeable with ‘godsend’.

She and husband Matthew decided to try the procedure for their eldest son, Samuel, who was born with Down syndrome, to counter persistent feeding problems that were hampering his ability to take in enough nutrition to grow and thrive.

Now 13, throughout his short life Samuel has endured countless hospitalisations – including for open heart surgery at five months of age and leukaemia at 18 months. “Samuel has quite a complex mix of issues which, put together, make it harder for him to swallow,” Natalie said.

“He was getting a lot of nasal regurgitation and could only manage soft purees and foods like yoghurt. The more he ate, the more it would go up his nose and the more he would sneeze it out. It was awful and uncomfortable for him, and he was getting sinus infections.”

Samuel underwent his gastrostomy in 2019, and while navigating the new feeding process was initially difficult, the results have spoken for themselves.

“For one thing I no longer had to make such a massive quantity of blended food and try to have Sammy eat it. But more importantly he started putting on weight and his development increased dramatically,” Natalie said.

It was quite amazing watching that change and how much he actually needed that – since then he’s just gone up and up.

Natalie Hevron

Natalie shared her family’s experiences with Associate Professor Downs and team to help them develop Nourish, a set of resources designed to support families and health and allied professionals on the gastrostomy journey.

“Nourish didn’t exist when we first contemplated a gastrostomy and we had to figure a lot out through trial and error, and speaking to different parents to try to gather the information we needed,” she said.

“Simple things like how do you order the feeds and equipment, how do you store and wash your equipment, and can you use it again?

“There are so many practical things that have an impact if not dealt with – little things can turn into big things. Having practical solutions can provide a sense of control around a not-so-controllable situation.”


Pictured: Natalie Hevron feeds son Samuel, who had a gastrostomy inserted in 2019