A Whole(some) New World
Sarah Thomas and her twin sons, Lewis (front) and Cohan
When Brisbane mum Sarah Thomas was told that her son, Lewis, would be PEG fed, she was determined to feed him what his twin brother was eating – real, nutritious food. Now her business, Wholesome Blends, is helping countless other families do the same.
How did tube-feeding come into your life?
Lewis had a stroke when he was three, and during his rehab we were on and off an NG tube. Then he started eating, but when he was at school he got diagnosed with ADHD and we put him on ADHD medication that suppressed his appetite. Lewis also struggles to swallow and chew – but we didn’t know this for a long time.
We had gone through a year of intensive feeding therapy that we had paid for ourselves – nearly $10,000 – and it was just so hard. When I was told Lewis needed to have a PEG permanently inserted, I felt like I’d failed, as a parent, to feed my child. It was the worst feeling I’ve ever had.
It’s so scary not being able to meet this fundamental need, isn’t it?
It is. There’s this massive element of grief that comes with that. We’re pregnant and we’re told that we need to look after and keep these babies alive, and part of that is feeding them and keeping them clean and loving them. And if we can’t do one of those things, there’s a massive area of grief. Society told me to do something and I wasn’t able to do it. And I just felt like I’d let my son down.
It was a real blow when we found out my child wouldn’t be eating or drinking by mouth any more.
We were told the same. We were told nil by mouth, and that Lewis needed to have everything through the PEG. But I jumped straight to the future. I knew that if I didn’t give Lewis sensory activity in his mouth, then it would be too hard later to fix that. So even though they said nil by mouth, I still gave apple puree or a cracker if he could.
I gave him opportunities, whether or not he chewed it or spat it out, it didn’t matter. But I knew that he needed to crunch, to feel smoothness, to have sensory activity going on. Because I knew at some point, someone would say to me, he’s doing so well, let’s start on sensory activity. And it would have been too late.
When did you decide that blends were right for Lewis?
As soon as he got the PEG, I said to my team there and then, I’m not giving him formula. I know you’re not going to support me but, if I keep some food diaries, can you just tell me that I’m doing it right and he’s getting enough calories? And they said yes, because they knew that this was the easiest way to work with me.
So I just jumped into it. There wasn’t as much information about this out there four years ago as what there is now. But I jumped on a few Facebook sites and I just started experimenting.
Was it scary to give Lewis his first blend?
I thought he was going to grow another head – or die – when I put a syringe into him. It was such a daunting experience. And I probably overdid it with the healthiness. It was a blend of boiled eggs, spinach and quinoa. But he didn’t die or grow another head. So I slowly shifted him to a totally blended diet. That’s all I did – and I saw a massive difference.
These days, what do family meals look like at your house?
We’re really lucky that Lewis can tolerate all food. So I’ll serve him up a small plate of whatever we’re all having, nachos or mac and cheese - spaghetti bolognaise is a good one. We don’t eat steak. We very rarely eat sausages. All our food is very soft, and we’ve just adapted it that way.
Amazingly, Lewis loves broccoli and mushrooms, so we eat a lot of broccoli and mushrooms. Lewis will eat a couple of mouthfuls and will chat and chat, and after 10 or so minutes he’ll say, “I’m full”. And then I’ll say, “Do you want me to blend the rest of that?” And he’ll say “Yes please”.
Sitting at the table, being part of that, is really important. And whether he eats or not, we still have that time where we sit down. Don’t get me wrong, we don’t sit at the table every night. We’re not that amazing. Sometimes we sit around the coffee table and watch Friends.
Any tube-feeding hacks you’d care to share?
Spray a bit of olive oil on the tip of the syringe plunger. It slides beautifully.
I’ve also had parents suggest washing the syringes in vinegar to make them last longer. Do you do that?
I’m not that good of a mother. They get hand washed. And then I’ve got one of those spiky bottle racks to dry. This is the thing – I don’t treat Lewis’s equipment any different to how I treat our equipment. So if I’m handwashing some plates then yeah, I’ll do the syringes and they’ll get dried the same. I don’t know how much dexterity Arlo has, but syringes make fantastic water guns in the bath, too.
That’s awesome. Nothing like a bit of fun to take the fear out of tube-feeding.
I can tell you a story about Lewis. A few days before he started highschool we went in to demonstrate to his teachers how to do a tube feed. I was saying things like, “I don’t want you to be scared, it’s super easy, we use this blend, this is how we do it…”
Lewis was sitting on a chair and I said, right, I’ll hook up the syringe and the extension, would anyone like to try and push the blend through? The teachers all lined up. Okay, yep, we’ll give it a go. And this teacher I’ve never met before came up and she started pushing the plunger in and Lewis screamed ARRGH!
This teacher just lost it. She leapt back. And then Lewis said, “Haha, I got you!” So those teachers learned there and then what my son is like.
Lewis was the inspiration behind your business. What made you start Wholesome Blends?
I’m a very big believer in people blending at home. So what I wanted was something for convenience. For about nine months I researched how to make the product. I could have done this three years ago if I went refrigerated but that’s not ‘on-the-go’. People still need to take a refrigerator pack out with them, and that’s not what I wanted.
I looked at UHT [ultra-high temperature processing] and all of these different ways to cook food, but I wouldn’t bend on it keeping nutritional value and being high in calories.
I’m guessing your 20 years’ experience in the food industry as an event planner didn’t go astray here. How did you get what you wanted?
It took about a year to finally work out with a food technologist, a food scientist, the Queensland government, private contractors, chefs and dieticians, how do we get a shelf-stable product? We finally found a way to cook it, and then we had to find a manufacturer. But no one wanted to touch me. What I was doing was too hard.
It took about six months to find a facility that wanted to help me, and it took a lot of trial and error for them to work out what I wanted to achieve. But they were really good and, together, we got the pork and oats flavour out. I worked with that one first because that was the one I cooked at home the thinnest and the best. It was just so smooth.
We’ve just released the vegetarian one recently, and now that they’ve kind of got the hang of it - and hang of me - and that’s been a big part, as well. We’ve got two more flavours in development at the moment as well. We are definitely going with a chicken version, and we’re looking at a red meat one, too.
The Australian medical sector has been slow to accept blended feeds as a safe option. Tell me how you’re working to speed things up here.
I recently met with dieticians at a large Australian children’s hospital and said, ‘I know you don’t like blended diets. I’m hearing that everywhere, so what can I do to make my blends good for you, so you are comfortable in allowing people to bring in this feed and you’re not going to throw it out. Because I already know you’ve got three families hiding food in their suitcases at the moment. And they said, “We know”.
They were really comfortable with a shelf-stable option, but that’s a baby step. I want them to be comfortable with people bringing blended food in from home, as well. So I feel like there’s this little war that we will win, and it’s just about re-educating the medical system.