Tube-feeding and travel
A trio of tube-feeding families share their holiday stories and tips.
Stacey Phillips
We started preparing for our trip to the US well in advance because we knew it was going to be a bit of a mission. I saw my GP every week for two months, getting letters to justify our medications and making sure we had all of our supplies sorted.
I was quite prepared to be questioned because I had all of our medication in my carry-on bag. When you’ve got three kids all on meds, it’s full on! Normally our chemist makes Webster-packs for us, but we had to go back to the bottles and everything needed to be labelled.
We ended up booking an extra bag just for all of my tube-feeding son, Callum’s, supplies. We took three weeks’ worth of Wholesome Blends pouches, vitamins, a spare G-tube button, spare extension sets and syringes.
We didn’t have any problems tube-feeding on the plane. We just asked the airline staff for a cup of water so we could do Callum’s flushes and used a ChooMee SoftSip Food Pouch Top with our pouches of food for his bolus feeds.
Callum ate about half of his meals via his G-tube while we travelled – often because there are no vegetables in America! We found a new love of The Cheesecake Factory because it served real food. Otherwise it was just chips or pancakes from IHOP [International House of Pancakes].
When we went to Disneyland, the only tricky things were finding a seat and making sure we had enough water. You don’t want to be lining up for food and drink, so we ended up hiring a locker and grabbing supplies from there as we needed.
We also had a Disneyland disability access pass so we could ‘virtually queue’ for rides and attractions, which was awesome, because lining up with three kids with ADHD is hard work!
As we were leaving the US, security staff stopped us and checked Callum’s thickener and his water bottle, but as soon as I said he needed these things for medical purposes, they sent us on our way. All of those weeks spent getting those letters and I didn’t need them once! But I bet if I hadn’t had them, they’d have wanted them.
While we were in the US, people really didn’t take much notice of Callum’s tube-feeding. It wasn’t out of the norm and no one really questioned us. It was just so inclusive – I’ve never experienced anything like it.
Travel checklist:
Book an extra bag for supplies
Stock up on shelf-stable feeds
Get disability access passes at theme parks
Jenny and Neil Anderson
We’ve got a son, daughter-in-law and grandson who live in the UK and we’ve travelled to visit them three times since my husband, Neil, had a stroke. He was 60 years old when it happened and, since then, he’s had a G-tube.
Once Neil started tube-feeding, when it came to travel, I think the biggest issue for me was that I was really scared about how I would feed him. But I thought, you know what? I’m not going to let this beat us. We’re in this together and we either do it or we don’t. And we made that pact that we could do this.
Our dietitian helped us by suggesting we take powdered formula for the plane, because you’re not allowed to take any liquids more than 100ml onboard. So I could mix that up on the plane, but then my concern was, where can I get Neil’s formula once we’re in the UK?
When we first went over I took a whole lot with me. But then my daughter-in-law and I did a bit of research and found a local place that supplied it, so I got some delivered to their home. I’ve decided that from now on when we go, I’m just going to order it over there.
We do gravity feeds on the plane and Neil can hold the syringe for me while we’re pushing it through. We also get assistance throughout the whole journey, which takes the worry out of navigating airports. The only thing that’s a bit embarrassing is that while Neil is pushed in a wheelchair, I have to sit in the airport buggy. We have a good laugh!
I always have Neil’s G-tube button changed about two weeks before we go, because then I can make sure that there are no infections or problems with it. To those who are new to travelling with a feeding tube, I say go for it. Be positive, stay strong, you can do it.
Travel checklist:
Explore the option of powdered formulas
See if you can source feeds locally
Ask your airline for assistance throughout your journey
Sarah Thomas
I took my then-10-year-old twin sons, Cohan and Lewis – Lewis has a G-tube – to Tokyo and this meant two flights with a stop in Singapore. We had to be prepared for 15 hours of tube-feeding in transit and I had to charge Lewis’ feeding pump during our stopover so it would make the distance.
I had a whole suitcase of formula and pouches of puréed baby food for Lewis, because this was before I started making Wholesome Blends. That was one of the defining moments of – this is ridiculous, we need a better option!
I had got all my doctors’ certificates and letters for our medications organised, but then a few days before we left, I realised I had to fill out a form that was in Japanese. After months of planning, I didn’t have the time or energy to find a translator to help me do this. So I sent a message to my girlfriend who we’d be staying with in Tokyo, saying: “See you soon! And by the way, if for any reason I get arrested, can you just come get the kids from the airport?”
We got to Tokyo and as we made our way through customs with my bag of medical supplies, I said to Lewis, just lift up your shirt and show them your tummy. This got us through, no issues. Our chemist had specially labelled our medications and that was really handy. With hindsight, I’d probably get a letter translated explaining what we were doing and why we were bringing stuff into the country.
While it wasn’t ideal to bring baby food over for Lewis, I’m glad I did, because I couldn’t understand the Japanese food labelling. My friend there showed me what looked like a juice popper, telling me it was actually full of saké – Japanese rice wine – and that she’d nearly put it in her kids’ lunchboxes!
If you’re travelling with a tubie, the best thing you can have is a connection to the local tube-feeding community because they’ll never let you down. It doesn’t matter where you are in the world, you can almost guarantee that the tubie community will help you if you are in trouble.
Travel checklist:
Have a letter translated into the local language
Ask your chemist to label medications as required
Link in with the local tube-feeding community
This feature was made in partnership with Avanos. For easily digestible information about tube-feeding at any age and any stage, visit TubeFed by Avanos.