From One PEG Mother to Another

A single Facebook comment from Eron Barnett changed our early tube-feeding days from dire to doable. Here, the Melbourne-based mother and special-education teacher-in-training shares what she’s learned from a decade of blending meals for her daughter, Sarah.

Firstly, thank you for saving our lives. What gave you the confidence to tell me to try blends for my kid?

I was a bit brutal saying it blankly but the amount of people I know who have persisted and persisted with formula - I persisted with formula for a long time, with Sarah and it just didn’t work. It was a huge relief when we changed over.

I was scared at first because I had dietitians telling me I had to get the recipe perfect, but after trialling different formulas and not getting on top of Sarah’s vomiting, I started just blending our ‘normal’ meals and she improved straight away. It’s very much trial and error at first, but it’s possible.

Tell me how tube-feeding came into your life.

Sarah is diagnosed with atypical Rett syndrome. She does eat orally as well as through her PEG, but she was a tricky eater early on. We had to have the right texture and the right kinds of foods. When she was about 13, she just got to a point where she was just getting too tired to eat and she was catching every infection under the sun.

She was getting sicker and sicker, and the paediatrician had her seen by almost every specialist in the hospital, including the eating disorder clinic. We eventually got to see a gastroenterologist and he asked, “can I sit her on my lap and try to feed her?” I said, ”she’s not going to eat, but go for your life!”

So he did that and he’s playing with her and making her laugh, and then he gets some puréed apples and tries to put them in her mouth and she just went, nup, and tipped it all over him. He just smiled, handed her back to me and said: “You’re doing a great job, Mum, keep it up. I’ll put in my recommendation for a PEG.”

How did you feel about your child being tube-fed? It’s a hard decision sometimes. For me, I already knew that’s what Sarah needed. I had experience with PEGs before. But for a lot of parents, they’ve got no idea what these PEGs are and it seems really daunting and final. People don’t realise you can actually take them out and they heal up and you just have a little scar on your tummy. But it’s huge for some people.

How did you happen to have prior experience with PEGs? I’ve been working in special schools since I was 15 - I’m currently studying to be a special-education teacher - and some of my friends’ kids had tubes. I just knew that this was the answer for Sarah. When she was younger she probably should have had a tube. It was considered, but

I pushed and worked so hard to get her to eat orally, and I succeeded, but as she was getting bigger it just got harder and harder for her. Was it a relief when she finally got a PEG, then? Oh yeah, it was a huge relief. Because it took the pressure off me trying to get medication into her and it took the pressure off her eating.

That was around 10 years ago, and we have only had two unplanned hospital admissions since. One of those was for a spider bite and the other was uncontrolled vomiting due to her allergies.

We’re pretty lucky that she doesn’t have any other medical complexities. We don’t have to deal with seizures, we don’t have any heart, kidney or liver issues. Our challenge has been getting nutrition into her. We’ve had a lot of emergency department trips with vomiting, but once we got her off formula and worked out a lot of the foods that contribute to that, we reduced our ED trips.

How did you first find out about blends?

I had a friend who was looking into transitioning her child and I said to her, “I wish there was an option that wasn’t formula,” and she was like, “well, actually…” and started telling me what she’d been finding out about. I then jumped on to the Blenderized RN Facebook page and a few of the other US-based Facebook groups.

This friend and I both ended up getting Thermomixes to make blended feeds and we’ve been doing that ever since.

We all know that ‘fed is best’, but medical professionals tell mums of babies that breast milk is best, and to not give them formula unless they absolutely have to. Why does that change just because our kids are disabled? I just want my kid to eat healthily and the best way, for us, was blended.

Is a Thermomix still your tool of choice for making blends?

Yes. When I’m making bigger amounts we use the Thermie. We’ve got a Nutri Ninja as well. If we’re going to a restaurant and I know it’s somewhere where we can get a meal Sarah can eat, I’ll take the Ninja with us, along with some almond milk. I’ll buy her the meal, blend it up, and she can either choose to eat it orally or we put it down the PEG.

Doesn’t that draw a lot of attention? It does! You get some interesting looks, but who cares, your kid is eating. People take that for granted. I’ve often had waiters and waitresses walk over a little bit confused and then I’ve just explained it a little bit, but I’ve never had anyone complain. I know people who take their kids to Macca’s birthday parties and just put their Happy Meal into the blender and blend it up.

Some of us can feel awkward about tube-feeding our kids in public. I love how you are just out there, blending in restaurants!

What’s your best tip for people who are keen to try blends?

Seriously, just don’t be afraid of trying. That’s the biggest thing. I mean, there are some kids where you’ve got to be really particular about certain nutrients, but in general if your kid doesn’t have very specific dietary needs, grab whatever the family is eating and put a serve in the blender. It doesn’t have to be complex.