Bright as a Button

Stacey and Anthony Phillips with their sons Callum, Harry and Isaac

Stacey Phillips has been tube feeding the youngest of her three sons, Callum, since he was a newborn. So to avoid obsessively Googling Callum’s conditions, this crafty Queenslander busied her hands with what would become her business, Tubie Fun, Australia’s one-stop shop for cute and colourful tube feeding accessories. 

How did tube feeding come into your life?

When Callum was born we noticed that he had an issue with his breathing, and had nine weeks when we couldn’t get anyone to take us seriously. At our third private paediatrician appointment, we were admitted within 15 minutes of stepping foot in her office. Three days later Callum had airway surgery and we found out he was aspirating, as well. So from nine weeks old he was tube fed. 

We started on an NG [nasogastric] tube and then we moved to an NJ [nasojejunal] tube, because he was refluxing, and then we went to a GJ [gastrostomy-jejunostomy] button, which caused some major complications. 

We have had quite a rollercoaster ride with Callum’s tubes. He had a stomach ulcer that nobody knew about, and the balloon was rubbing on the ulcer. He was bleeding internally and started vomiting blood. We got rushed for a blood transfusion at 2am one morning, which was awful, but then he came good and we went from there. Although this was our crazy experience, I still believe that Callum’s feeding button was worth every worry as he wouldn’t be here today without it.

So you guys had a pretty terrible start to this journey…

Yeah it was interesting! It was about seven months that we stayed in hospital for, which was really hard. Our two other kids were still quite young at this time, and they didn’t know what had happened. They’d gotten a new brother and were just thrown into this whole mix. After we had the GJ for quite some time, we then moved to a G [gastrostomy] tube, and that’s what we’re on now. 

These days, does Callum eat or drink orally at all?

Yes. He can now tolerate solids and he does eat. But he still chokes on food, so he has to have thickened fluids. He still can’t have normal water or anything that resembles thin liquids, so we use his tube for hydration, medicine and, when he’s not well, for hydrolyte. There are times that Callum refuses to eat and in these instances we use his tube to give him nutrition by way of a blended diet. 

Did you connect with other tubie parents when all of this was kicking off with Callum?

I actually met a lady in hospital who said to me, “Get on to these support pages”, and “You know your child better than anyone else”. We just randomly met one day on the ward and she was my life-saver. It was this parent who got me on to all of the supports and told me what to look for and where to turn to next. 

After Callum had his button put it in, I remember being very overwhelmed. I’d never had a tube put in my child before. I was very anxious about if his stoma site was okay, and how to ensure we were caring for it correctly. The nurses on the ward were helping with what information they could but we gained a lot more insight after we were referred to our stoma nurse at the children’s hospital and by asking a lot of questions in the support groups.

When, in the midst of all of this, did you start Tubie Fun?

After our massive stint in hospital we came home and I just couldn’t let go. I was Googling every night, trying to research and figure out what was going on with my child. I just didn’t know how to stop and I just thought to myself - you know what, I’ve got to do something to get my mind off this or else I’m going to end up in a very unhealthy place. 

I couldn’t find the button pads that I needed in Australia, so I thought, well, I’ll just make my own. I used to sew, so I just started sewing again. That was back in March of 2017. I started making them for Callum and then a few friends asked me if I could make them for them, and then it kind of just took off from there. 

Sometimes you just need a distraction and something for yourself. And that’s where we started. Just one of those little Bunnings plastic tables with my tiny little sewing machine, sitting next to my bed, because we didn't have any spare rooms in the house. That’s how we started.  

Where is the biz at now? 

I did a big release recently and sent out about 220 button pads in one day. I make everything by hand, so that was a lot of work. It would be easier to outsource all of this but I want to keep my products hand-made – and made by someone who knows what we’re going through, walking the same journey.

Do you have anyone to help you?

I’ve just put my first employees on. I have a wonderful lady who comes in and helps me cut fabric and I’m loving her being around to help support me. And I have an admin assistant who works from her home and also has a child with additional needs. She does an amazing job with helping me get back to everyone and their question, while helping push me to achieve my best. I’m very big into supporting other mums who’ve got medically complex kids.

You make your button pads from scratch – but I’m guessing you’ve struck a deal with Skip Hop that allows you to modify their zoo collection backpacks. How did this come about?

They were quite taken aback when I first approached them, because I was chopping up their bags. It took them a while to understand what we were trying to achieve but now they see it as a huge positive that we get to help a community that no one really knows about. I’m still in the process of trying to find a reliable adult backpack supplier that’s affordable for everyone – that has been a major struggle, but one I am determined to overcome. 

I think you’re very respectful of the original backpack design. I was expecting some kind of Frankenstein bag to arrive, but the only noticeable difference is a neatly crafted porthole on one side. 

Thank you. Our kids already stand out enough. And anything that we can do to help them celebrate their individuality and make them be more at peace with their tube feeding makes it all worth it. I’d rather people say, ‘Oh, that looks really cool, what’s that for?’ Instead of saying, ‘Oh, what’s that thing hanging off your wheelchair?’ 

I’m just trying to reduce that stigma around disability and tube feeding. We all eat, it’s just done differently sometimes.

What’s it like raising children who have different ways of eating?

It’s... challenging. 

How so? What do family meals look like at your house?

We try to keep everything as “normal” as possible. I cook one meal and then modify it for Callum. We enjoy the same meal together, just presented differently. I sit next to Callum and make sure he eats safely and calmly. He’s also got ADHD traits, which make focusing very very challenging for him.

I make sure Callum’s food is softer and cut up smaller to try and reduce his choking. And then, whatever food he doesn’t eat, we’ll say, ‘Do you want some food in your tummy?’ and blend up what we’ve got there. Or, we’ll just go to a pouch of food.

How did you find your way to blends, with there being very little info around?

I started off with blending veggies at home and found Sarah, who does Wholesome Blends. She’s fantastic and has helped me a lot with getting all of that sorted.

What are your tube-feeding tips?

Back when he was on formula we used to run Callum’s feeds overnight, and would thread his tube and line extension through a pool noodle so he wouldn’t wrap himself in the cord. The pool noodle covers also acted as a reminder for me to check I’d closed off his extension tube, so we didn’t end up feeding the bed. 

I’ve heard other parents talking about feeding the bed. What does this mean?

So if the extension tube is not connected properly then all the feed just goes into the bed instead of going into your child. Then you think to yourself, well, you’re 12 hours behind in feeds, no wonder you’re not happy. You’re starving!

I’ve just thought of another tip. When Callum had really bad reflux we would make his cot up with a waterproof protector, then a sheet, then another a waterproof protector, another sheet, a waterproof protector, a sheet…

You layered up!

Yep. So in the middle of the night if he vomited again, I’d just take one whole layer off and the bed was already made. I’d pop him back in, throw the sheets in the laundry and deal with it all in the morning.  

Another great pointer. I’m going to ask you for one more piece of advice - what words of wisdom do you have for parents who are new to the tube-feeding space?

It’s going to be okay. It's okay to be different and it’s okay to grieve that your child isn’t like everyone else’s child. It doesn’t mean that it’s better or worse, it’s just different, and it will be okay.

Callum is now five and we still have people in our lives that aren’t on board with his tube feeding. They can’t look at it, they can’t touch it, they can’t deal with it and it’s unfortunate. But there are lots of us out there who are willing to help.

We should be celebrating the life-saving devices that tubes are, instead of thinking of them as these really awful medical things. They are what keep our children alive. They keep our children happy and healthy and thriving. So try and look for the positives.