Winning Formula
Be it blended whole food, a nourishing supplement or a bit of both, fed is always best. Here, three tube-feeding families share why Abbott’s nutrition products work for them.
A trusty top-up
When Katelyn Armstrong was three months old, she stopped finishing her bottles. At four months old, she had a nasogastric tube placed and, as her mum Chelsea says, things declined from there.
“Her formal diagnosis is ‘failure to thrive’ and she struggles to hold nutrition, gain weight and grow typically for her age. At three years old she had her G-tube put in and it was the best thing that ever happened to her.”
Now five, Katelyn is looking forward to starting school and loves getting outdoors on her bike. A typical day will see her eating several meals and having PediaSure* Fibre, an Abbott nutrition product, through her tube.
“She generally loves to watch a movie, play on her iPad, play cards or read a story whilst her pump is giving her the extra top-up,” says Chelsea.
“We are so lucky that this supplement can be provided through a nutritional program and covered by the NDIS (National Disability Insurance Scheme). We’ve also found the convenience of the small bottles means we can leave extra supplies at family and friends’ homes, too.”
In giving advice to other families, Chelsea says to always ask questions and take each day as it comes. “And remember, nourishing your child in whatever way it looks is absolutely okay.”
A failsafe foundation
Five-year-old Jon Beit has spinal muscular atrophy, “so his muscles are weak”, says Megan, Jon’s mum. “He’s been tube-fed since he was six months old and it’s been a bit of a journey for us, because I breastfed him until that point. Then I expressed milk and put it down the tube. Then I was like, I can’t do this anymore!”
Jon had his PEG-J (percutaneous endoscopic gastrojejunostomy) tube placed at 18 months and, for a long time, thrived on a blended-food diet and overnight formula feeds.
“He had the best diet of anyone that went to his dietitian because it all went down the tube. Food, medicine, water, no argument,” says Megan. “He’s always just like, ‘eh, whatever!’”
After 18 months of no hospital admissions, in early 2024, Jon became very unwell.
“Whenever Jon gets sick, the first thing that happens is he stops digesting food, so the doctors go straight to continuous feeds through the jejunal part of his PEG-J. We’ve been on PediaSure* since March,” says Megan.
“The good thing about it is, because I get it in the tins of vanilla- flavoured powder, we’re able to adjust the calories. Jon’s quite skinny and we have lots of issues with weight, so we’re able to add extra calories to his feeds and really play around with the nutrition. Having that little failsafe has been really good.”
On the topic of coming to terms with her child needing to tube-feed, Megan says that over time, her perspective has shifted.
“There’s that mental hurdle, as a parent, because tube-feeding is not your expectation of how it should be. But once you realise that it’s your issue – and not the child’s problem – it makes it easier for you to be like, they’re not suffering, I’m suffering, so I can get over it.”
A perfect accompaniment
Grace O’Flaherty loves her food. While a rare genetic condition, Rett syndrome, impacts this eight- year-old’s physical abilities, she’s developed a healthy appetite.
“She’ll sit down in a therapy session and will not touch a toy. She will not touch a bubble machine, she will barely touch a button – but if you put food in front of her, she will grab it,” says Grace’s mum, Roxanne.
Getting enough food, however, is challenging. Grace experiences involuntary movements and periods of hyperventilation that keep her metabolism firing and make her fatigued. It’s hard for Grace to get enough calories from meals alone, so she has a G-tube.
“We do 500ml bolus feeds of PediaSure* overnight, while she’s snoozing,” says Roxanne.
For breakfast, if she’s up to it, Grace munches on toast, scrambled eggs or cereal. At school she has morning tea and lunch, topped up with 60ml bolus feeds of PediaSure*, before heading home to enjoy afternoon tea and dinner.
“So it’s a big mix,” says Roxanne. “We found our way to PediaSure* because it offers complete, balanced nutrition and ticks all the boxes for what Grace needs in her day, which is reassuring. It’s also convenient – we just pop it in her school bag like her drink bottle and lunch box.”
Sometimes, Roxanne will also use PediaSure* in her cooking for a boost of calories. “I put it through carbonara and other creamy-based dishes,” she says. “While being fully tube-fed is not a bad thing at all, food is yummy – and I know it’s Grace’s motivator. I hope that she’ll be able to keep enjoying it.”
This article was made in partnership with Abbott. To explore their full range of science-based nutrition products for people of all ages, visit their website.