Acquired Taste

With a chronic inflammatory condition and lengthy list of allergies, 18-year-old Alexander Vane has lived on commercial formula through a G-tube since he was seven. However, a new medication has this New Zealander feasting on a delicious array of foods for the first time.

What’s it like going to school with a gastrostomy (G) tube?

When I played hockey or soccer we’d put this big band around my body and stuff it with cotton wool to protect my tube – that was quite noticeable. But during school it hasn’t been a big deal because I’ve always had great friends there to support me.

I’d have most of my feeds in a separate room during morning tea or lunch, but they’d join me for that and we’d have a chat.

What do you have through your tube?

It’s a hypoallergenic formula at the moment. I’ve got eosinophilic esophagitis (EoE) and I’ve never been able to eat enough food safely, so this formula is how I’ve stayed alive and continued to thrive.

Do you eat anything orally?

In the last two years we’ve come across a miracle drug, which our government funding agency eventually approved after saying I ‘wasn’t exceptional enough’ a few times. Since we got approval I’ve been injecting it once a week and we’ve been able to slowly introduce foods. So I’ve actually got a bit of a diet now, which is incredible.

I’ve always loved cooking. Before I could eat I’d just put rubber gloves on and try to help out where I could. So I’ve always been interested in food and being able to eat it now is a really interesting learning curve. Chip sandwiches, for example. Kids love them when they’re small but I missed all of that. So I’m coming across them now and telling all my friends, “oh my gosh, have you tried this? This is amazing!” and they’re like, “yeah, maybe when I was like six”.

I’d argue chip sandwiches are amazing at any age. How does it feel to be eating food now, after years of nothing?

Before the miracle drug I was able to have a few fruits and vegetables – it was about eight in total. But even they ended up being unsafe, so it was back to no food. I’ve eaten a little bit over the years, but nowadays, coming across different types of meats, breads, firm things, soft things, is really interesting. And all the different flavours as well, which is great.

It must be mind-blowing – we’ve caught you at a very interesting time. Prior to that, when you were in social situations centred around food, was that hard?

I definitely struggled with it, especially at times like Christmas. Growing up with my tube made me realise how much society revolves around food and I definitely felt like I was missing out.

But I tried to involve myself where I could, and Mum and Dad always made an effort. There are so many different ways you can cook a potato or apple, so we would try and work them into celebratory meals.

How did you explain the way you eat when meeting new people?

I think my go-to line was probably something like, my body rejects the food that I eat, so I substitute it for a drink that has all the vitamins and nutrients I need to keep me going. My high-school years are when I’ve had to explain it the most. But I’ve kept a really solid friendship group all the way through and they all have their own little ways of explaining it.

How are they feeling about your new-found diet?

After a year of being on this miracle drug, my mates and I got dressed up in suits, went bowling and then went back to one

of their houses and cooked a meal together. This was a really big step for me because that was the first time I’d ever had food that was cooked outside of my own home. We all sat around in our suits with identical meals of potatoes, steak and salads, and celebrated.

That’s a very cool story...

It’s the little things like that that make everything so much easier to deal with. That’s a memory I’ll have forever. I won’t always remember the nights my pump alarms were going off, or when my feed leaked and I had to have a shower at four in the morning. But I’ll remember the really good stuff. That’s what has got me through the last 10 years of having a tube.

Do you get into the G-tube accessories? Arlo has some very cute button pads, but that might be something you grow out of.

I do have some and I used them quite a bit with my old tube site location to help the leaking, because that was nasty. Now I just leave it alone and clean it at night. It was something that I definitely used to worry about, because it stunk a lot. But now I just put a bunch of deodorant on and call it a day.

On the topic of potentially embarrassing odours, has tube- feeding been an issue when it comes to dating?

No, not really. Most people have been really good about it and because I tend to meet people through friends, they already know what’s going on. I am pretty good at being able to read someone’s reaction and know who’s approachable or not. It hasn’t been an issue.

What advice do you have for young people who are new to tube-feeding?

People are never asking about your tube to tease or be rude. Everyone has great intentions but some people might come across a bit rough or blunt. I promise you they are just curious and interested – we all want to learn. And if we’re open about what we’re doing, then they see a new part of the world. They see a new part of how people’s lives are and become more aware of people’s day-to-day challenges. And that can help them in their own life, as well.

Some words of wisdom from Alexander’s mum, Sarah Vane

Alexander is an outlier for his condition and resistant to all treatment options, so that’s how we ended up on this trial and a very new FDA [Food and Drug Administration] approved drug. Each week he has an injection that allows him to eat. Without it, he can’t have any food.

We had quite the battle to get there. I’d rung all over the world – manufacturers, distributors and researchers – because we simply couldn’t keep him going on amino- acid formula alone.

After being on a nasogastric (NG) tube in the neonatal intensive care unit, then drinking formula for about a year, Alexander was finally diagnosed with EoE at 15 months old, with reactions to both food and environmental triggers. He got an NG at seven years old, then switched to G-tube at eight, with a tube resiting at 15.

We had just lost our home in the 2011 Christchurch earthquake when Alexander started on his G-tube. We moved six times in three years, twice with only carry bags. Finding suitable places to live was tough when competing with so many hundreds of others.

Since then we’ve trialled foods off and on, then off again until 2020, when we started reintroducing food with the new medication. Don’t get me started on food diaries – I have folders full of them.

Throughout all of this, Alexander has played sports. He loves going mountain biking and on an annual hike with his dad, my husband Paul. Alexander and his younger sister, Isabel, have the usual sibling rivalries but also a wonderfully tight bond. Appreciating he was missing out, she decided to give up some treat foods to show her support for him when they were younger. She has gained an understanding, responsible and caring nature that she takes out into the world.

Each age and stage has come with new challenges and I was unable to return to paid work with so much uncertainty. I spent two years going into Alexander’s school to help him tube-feed until we learned there was funding for a teacher’s aide. Paul went on the school camps so Alexander could take part there, too.

Being involved with school made a real difference and we could add some fun – like, ‘everyone eats like Alexander for a day’, or ‘al-fresco’ tube-feeding on sunny days on the lawn.

Sarah Gray and her organisation, ausEE Inc., have been a great source of support and information for our family. Closer to home, I joined a national clinical reference group to help improve paediatric tube-feeding in New Zealand. This group was created as a result of a directive from the health ministry in response to a patient petition – power to the people!

I was the only consumer representative alongside paediatricians, dietitians, psychologists, occupational therapists and outreach nurses – a great team who are now finally publishing, presenting and promoting a way forward.

As part of my work with this group, I designed a survey and reached out to many families who are tube-feeding. Their input was generous and so powerful. It unearthed key themes like the need for timely information, treatment, multidisciplinary support and more understanding of the emotional impact of tube-feeding.

One piece of advice that rang out loud and clear was: ‘If you aren’t sure, ask. And if you still aren’t sure, keep asking.’

When we all share, we gain company and strength beyond geographical boundaries. We make it that little bit better for others and create positive change.

Find some of Sarah’s work, resources and support for tube-feeding at kidshealth.org.nz