After a stock-standard pregnancy, her son arrived with a metabolic condition – and he’s only half of psychologist Jessica Gowans’ tube-feeding story. Here, the co-founder of the Macarthur Tube Feeding Families Facebook group tells us what she’s learned while raising two tubie kids.

When did tube feeding first come into your life?

As a newborn baby my son, Henry, wasn’t very good at feeding. But he was born with a severe metabolic disorder which meant that he couldn’t fast for a very long period of time, so we had to put a feeding tube down. He had an NG tube pretty much from the moment he was born, on and off, to support his metabolic disorder.

How did you feel about all this at the time?

Having a normal, ‘typical’ pregnancy and delivery, and then suddenly having a child diagnosed with such a severe disorder, was really confronting. It felt like a sliding doors moment where my version of motherhood was one way and then, suddenly, the other way - and it was a very confusing time.

Each additional thing that we had to try and understand and learn, such as the feeding tube, was also confronting. It’s difficult to adjust to because it’s not a common thing. You’ve got to try and navigate that space, usually on your own without much support. It was tricky.

You’re a psychologist. Were you able to help yourself out with some self-therapy?

I don’t know. But one of the things that I did really early on – that looking back now, I’m so grateful I did for myself – was see a psychologist six months into the journey when I realised I had to speak to somebody. Maybe being a psychologist myself helped me to do that sooner than another person would have. Without that support I don’t think I would have coped anywhere near as well as I did. And I’m not saying that I coped very well – but I got through it.

What was it like discovering that your daughter, Rosalie, would also need tube feeding?

When I found out that I was pregnant with Rosie and that she had the same condition, in my mind I thought, ‘OK, I get a do-over now’. Maybe Rosie will be a better feeder or I won’t make the same mistakes because, you know, you think that it would have been different if you’d made different choices or done things in a different way.

It was almost like I got to repeat history, but pretty much all the same things happened again. I felt like I was a failure as a parent, that I’d let my daughter down, I’d made the same mistakes, I could have done things differently. You know, all of those really negative, yucky things went through my head.

But I came to terms with it a lot quicker, because it had already happened. I’d walked this path before, I knew the direction that it was going in. It wasn’t as confusing the second time around.

Was there a high chance that Rosalie would have the same condition that Henry had?

Rosie was my surprise baby, and because of the genetic component of the condition there was a one in four chance that she would have the disorder. We did test for it and we did find out that she had it as well. So we kind of came to terms with that during the pregnancy.

But one of the things that can happen when you have kids with this metabolic disorder is you, as the mum, can go into liver failure. I didn’t do that with Henry but I did do that with Rosie. She was delivered pretty early and because of that she needed tube feeding in the NICU anyway, so there was nothing we could have done to avoid the tube-feeding factor.

Amid all the emotional challenges of coming to terms with what was going on, what was the biggest practical challenge you dealt with around tube feeding?

Learning how to use the feeding tube. I know that that sounds very simple, but what I mean is, how to best use the feeding tube in our lives – how to make tube feeds fit in. It was also a challenge finding where to get the equipment consistently and trying to find funding to pay for the equipment.

You didn’t have NDIS [National Disability Insurance Scheme] support in the early years?

When Henry had a gastrostomy tube - he got that when he was about one year old - it was starting to come out. But when you are NG tube fed, there aren’t the same funding packages as there are with NDIS and you need to get all of your equipment through the hospital. It’s really hard. You might go to the hospital and beg them for an NG tube and they’ll give you the wrong size, or the wrong type, all of that.

I hear you. We just spent $300 on a box of ten extension sets that are too thin.

See, this is all the stuff that you learn as you go along.

So Rosalie started on an NG as well. When did she get her PEG?

Because we’d been through everything with Henry, we kind of fast tracked Rosie’s PEG. So she got hers when she was about 10 months old.

What has eating looked like for your kiddos over the years?

For Henry it’s been very complicated. He has an autism diagnosis as well, so he has some sensory issues with food, but he loves food. He’s always found it hard to drink his formula, so he would get it through the tube, and then we found out that he had another rare disease, eosinophilic esophagitis, which meant that he reacted to cow’s milk protein. It causes inflammation in your esophagus and makes it really hard to swallow.

Once we treated that, he ate a little bit more orally because he was actually able to. But he’s still dependent on his formula that we have to mix up from scratch, because there’s no metabolically suitable formula for him that is dairy free.

On the other side is Rosie, and she can have dairy. She has a metabolically suitable formula from which she gets around 30% of her calorie intake, and for the rest she eats food. She only started eating orally about a year ago, and then that’s slowly built up to eating the majority of her food orally.

Do you ever eat out together, or is that all a bit tricky?

Look, we try. I meet up regularly with a friend and we go to McDonalds and grab a coffee, and I was buying Rosie a plain english muffin so she gets to go to McDonalds, which all the kids really want to do. But they’ve discontinued that on the menu now. So there aren’t really any low-fat options.

At McDonalds, who would have thought?

Yeah, that’s right! But even at a restaurant, it gets so exhausting. When you ask for low-fat food people think it’s a dietary preference, and they think you’re a bit odd asking for low-fat food for kids. But we don’t really eat out. We never really did anyway because we were tube feeding for so long and I was gravity feeding Rosie with a syringe pretty much until a year ago at every meal time.

Have you ever tried blends?

Yeah I did. When Henry was about three years old I was asking about blended food because he wasn’t eating and I felt so uncomfortable only giving him formula. I wanted to give him other types of food - it just felt like the right thing to do - but the feedback that I got in return was that it wasn’t the right thing to do. I had to grapple with the idea of breaking the rules, which was really hard for me.

Eventually a dietician helped me and we made a very basic recipe that incorporated his formula. I would try and put down single food blends - apple or pumpkin and things like that - but Henry’s experience with food has been really hard, because he was so sick for so long, so I always reverted back to the formula.

I do, from time to time, put different blends of things down. He’s always had really low iron, so I blend things like spinach and red meat. For Rosie I did a little bit of blends, but thankfully she’s eating.

The thing with blending is it’s really hard work, so the idea of Wholesome Blends is incredible. It wouldn’t have helped parents like me, because of the fat content, but it would have helped parents who were finding it overwhelming like I was at the time.

What’s your best tube-feeding tip?

It’s a bit cliche – and it’s not really a practical tip – but I like the idea of not crying over spilt milk. I’ve told myself that, on and off, for the past seven and a half years. My life is covered in milk and it gets so overwhelming, so I always say to myself, in a funny sort of way, don’t cry over spilt milk!

I cry over spilt meds. When I’ve crushed and mixed up my child’s numerous drugs and I spill that cup, I sob.

Well you know what, we should cry over that. We have a right to cry.

What’s the biggest tube-feeding blunder you’ve made?

I’ve fed everything other than my child, many times. I’ve fed the car seat, I’ve fed the pram, I’ve fed the bed, I’ve fed myself, I’ve tipped milk on my dog’s head, yeah…

It’s really hard to master, isn’t it. Which is why your Facebook group, Macarthur Tube Feeding Families, is a godsend. Why did you start this group?

I was pregnant with Rosie at the time, so I had Henry, he would’ve been about two, and I didn’t know anyone who tube fed. We were doing the playgroups and things like that and I just felt alone. The kids would sit down with their lunchboxes and I was chasing Henry around with a syringe. As much as I tried to make it a nice experience for Henry’s sake, I felt really alienated.

I was on Facebook one day and I noticed that one of my friend’s friends had a tube-feeding logo on her profile picture. I clicked on her profile and learned she was a local, so I messaged her and we ended up meeting up. She lives a five-minute walk away from me and I thought, wow, someone who lives just down the road has a child with a feeding tube! We started the Facebook group together and wondered if anyone else would join - and they did.

There are now more than 130 members in your group. Can anyone join, or do they have to be local?

We’re pretty loose on the borders and the boundaries, but there are lots of state-wide and country-wide groups, so we wanted to keep it local because it would mean that we all knew the therapists, we know the hospital, we know the area, and it didn’t become overwhelming.

We try and keep professionals out of the group, unless they’re a tube-feeding parent or carer, so that it feels like a safe, private environment. And we’re very tube-positive, so we don’t take tube-bashing. It’s just about learning the tips and the hacks and holding each other up.

The journey can be so overwhelming without it being further shaded or coloured by lots of negativity. I mean, it’s natural to be negative and you go through a grieving process every step of the way, and you can be angry, and it can be really hard. But I think generally most of us have children or family members with feeding tubes because we want their health to be better. So having a negative perspective about the tube is not helpful in any way.

We can complain, bitch and moan about it, but we all understand that the tube is there for a reason, and that reason is a positive one.

How do you hope your kids will eat in the future?

I want my children to eat as they can. I don’t have expectations for them. I went through the stage where I had expectations and it was hard, because what was happening was not what I expected. So I want them to do what they can and what they’re comfortable with, and I want them to have a positive relationship with food.

What advice do you have for parents who are new to the tube-feeding space?

That’s a big question. I think just understand that everyone’s journey is unique, and that you’ll need to go at your own pace - nobody can set that pace for you. Take your time to try and learn and understand, and be kind to yourself.

Two’s a Charm