How to travel with a medically complex tube fed baby. You can do it!

Just last week me and my 18 month old son Jaxon return from our second holiday together in the past 6 months since he was discharged from a long stay in hospital. I took on the challenge despite his around the clock feed and medications via a feeding tube and his abundance of medical conditions. A mix of a passion for travelling before Jaxon came along and awareness that our time together isn’t guaranteed forever leads to a determination to make precious memories around the world. When Jaxon was just 4 months old he was being tested for a syndrome that gave a one-year life expectancy. I recall only too well telling the nurse if it came back positive I would be taking him out of the hospital to travel the world against all odds to give him all the experiences I could. The test was negative but it didn’t secure our future with him still having a unknown prognosis and my determination to give him the world still hasn’t dissolved. I’ve had quite a few questions from other parents on how I do it and I want to break it down with tips and advise. I am still in the learning process but hopefully this can take some of the weight off your shoulders. Here’s how I travel with a medically complex tube fed child.

1. Travel Insurance 🌍

Okay, possibly the most important and yet still the one I keep leaving until last minute (I think I purchased this 3 days before our last trip!).

My first experience came from calling AXA travel insurance as I couldn’t find half of Jaxons diagnosis on the website. The phone call took about 90 minutes and in the end they couldn’t cover him. However, the advisor was lovely and the terminology they used was often different to his diagnosis. For example, his tube feed was put down and ‘deglutition dysfunction’ meanwhile his 1p36 deletion syndrome was simply referred to as Global Development Delay. For this reason I do recommend contacting an insurance company for their advise. It’s time-consuming but worthwhile. AXA emailed me the details of the phone call which I’ve referred to ever since.

We went to Tenerife for 7 nights and it costs me £42.12 to insure the two of us. For the last holiday to Cape Verde I used Compare the Market and it came up with 96 quotes ranging from £28.88 to £221.88. I opted for Virgin Money which was the first on the list with a 4* Defaqto (good cover rather than standard or basic) for £41.46. After we were originally declined I really expected prices to be through the roof so I was pleasantly surprised. Don’t give up at the first hurdle!

2. Feeding Supplies 💼

Okay, this part can be time-consuming depending on your childs feeding regime. You need to work out how many of everything you need to take with you. Syringes, feed containers, feeding sets and formula. If you need any help, ask your dietician. Once you’ve got your total amount, add an extra day or two worth of supplies.

The first trip we took a steriliser (I use a Milton cold water steriliser, super easy to make once a day and use for 24 hours) and a weeks worth of syringes but this time we’ve ended up with a backlog of syringes so I’ve calculated the amount we will need for the stay and I’m taking them for single-use only in hope it’s a little easier.

Get yourself a rumble trunk. It’s a giant container to put all of your medical/feeding supplies in that the airline will weigh separately (i’ll explain this more later on.). We are with Nutricia Homeward and I simply called them a few weeks in advance, said we were going on holiday and requested one which they then sent with the next delivery, free of charge. Call in advance as you can but never go without asking because you think it’s too late, they will usually try.

If you’re travelling for more than 10 days you can actually ask Nutricia to deliver to your hotel. I believe you have to inform them 3 months prior to travelling (though some have reported success giving later notice). I haven’t used this yet because I haven’t braved more than 7 days away.

Also, request spare pump if you use one incase it breaks. I patted myself on the back for this one when Jaxon through and broke his main pump 3 days into the holiday!

My son has a PEG JEJ button so I also take double the amount of spare extensions (usually change once a week so I take two of each to be extra) and I also take a spare button in case of an emergency plus a balloon syringe.

Now this might sound strange but I’ve also kept hold of a few NG tubes from the old days (almost a year ago now) specifically for holidays. I always think worst case scenario if his tube blocked or he pulled it out we would go straight to hospital. But what if it was one hour into the six hour plane journey? Or during an excursion? Or there was a delay at the hospital for any reason? So as I trained to pass NG’s, I take a spare so that I can always get fluid into him some way as he doesn’t take anything orally.

3. Medication 💊

On our first trip abroad I took extra medications and it was lucky I did as we ran out of a bottle which was unexpected as I hadn’t calculated how many mls he had a day x the number of days we were travelling to notice he would use more than one bottle in that time. We also dropped a bottle which smashed. So this trip I’m taking all the opened bottles we currently have plus one spare of each. It works out quite well as his monthly medications date is whilst we’re away so we’re just having an early delivery. However you can call your pharmacy and explain you’re going away. In my experience they’re happy to supply more to ensure your child is well stocked. I have also calculated the amount needed of each.

Also, check all expiry dates before you go.

Additional to normal medications remember to take any supplies you would normally use if they were unwell such as paracetamol and dioralyte.

I take the medications which are open through in hand luggage and unopened spares in the trunk well protected. Call your airline but my experience has been that labelled medications are exempt from the 100ml hold luggage limit. Expect a slight delay going through airport security as they scan the bottles.

4. Documentation and Letters 📩

Okay so these are really important. Although I didn’t end up being asked for any of them, I wouldn’t dream of flying without them.

A letter to confirm your child is safe to fly. Having a medical baggage allowance, needing to take medications on the plane, having any concern in your mind your child may go into hospital – you need a fit to fly. The security at the airport may ask for this, the airline operator may ask to see this and if you go into hospital your insurance will want to see this. As Jaxons biggest health concern is his heart we get our safe to fly from his cardiologist. You can ask any of your childs doctors for this; their lead consultant, a specialist or their GP.

A letter from their dietician confirming the need for feeding supplies and details of the equipment. Our letter includes details of every item we need to take; syringes, containers, sets, formula, the pump. It also states the supplier (Nutricia) and their details, plus the dieticians contact details.

A list of medications. We take the last letter we’ve received from our most recent appointment (most write his up to date medications list and dosages on). I believe you can also take a prescription list from your pharmacy, but check!

Personally I also chose to take his last discharge letter which shows his past medical history, co morbidities and most recent problems (this also has a medications list on). Additionally I take his 24 hour care plan which I’ve typed out myself, it details everything hourly through the day; medications, feeds, ports used (PEG or JEJ) mls per hour and even details that he must be sitting up during his water feed. It also has on it how to make up his feeds and which tube is which.

I also take 3 copies of each of the above and put them into envelope packs. One for the main suitcase, one for hand luggage and one for the travel reps.

5. Airline ✈️

Our first trip to Tenerife we flew with British Airways. I called them and explained the situation and they informed me that their medical department were no longer permitted to authorise any excess baggage and in order to avoid charges we needed a letter from a doctor listing what would need to be carried and that it should be packed separately (rumble trunk!) and presented to airport staff at check in for authorisation. It sounded a little unnerving but it was no trouble at all when we arrived at the airport, we just had to hand it in as hold luggage at a separate drop in.

They also informed me there was a 100ml limit on liquid medication and that I would need a letter from Doctor explaining need (your medication list is fine or alternatively you can ask for a letter specifying that they will need it during the flight to ensure it’s allowed in hand luggage) and no refrigeration would be provided on board or could be guaranteed so I needed a cooling bag.

I was also allowed an extra case in hand luggage for two days of supplies and all medication.

This time we’re flying with TUI, I called and they advised me to weigh the rumble trunk and that they will add it to our booking when I inform them of the weight so it seems different airlines work differently. We also got extra hand luggage allowance with TUI too. I recommend calling and asking whoever you fly with.

6. Emergency Details 🆘

So although this is all stated here and there in the above, I like to carry one envelope with ‘Emergency details’ in my hand luggage and at all times during travel. This includes:

  • 24 hour care plan
  • Medical History
  • List of Diagnosis
  • Medication List
  • Dietician letter
  • Safe to fly
  • Nearest hospital (will have looked this up before leaving)
  • Optional: All of above in the native language (I did this for Tenerife but I couldn’t for Cape Verde)

6. The basics, just like every other baby 👶🏻

  • Lightweight stroller that lies flat (I’ve been using a Graco hand me down but it’s two pieces so I’m eyeing up the Joie now)
  • Suncream
  • Sun umbrella
  • Pushchair shade (AMAZING at night!)
  • Carseat cover – if you’re hiring a car and taking the car seat I HIGHLY recommend this to sling it on your back to free up hands for luggage and to stand out when collecting)
  • Spare dummies
  • Sterilising tablets or liquid
  • Steriliser
  • Power adaptor
  • Extension lead (gold!)
  • Swimwear
  • Lots of vests and shorts
  • Sun hats (if they’ll keep them on, I just had to keep Jaxon shaded)
  • Sunglasses (I laugh)
  • Bibs
  • Blanket
  • Thermometer – just in case!

So there you have it, the key points that make it possible to see the world with your bundle of complex happiness. I’m not saying it’s going to be easy but with this list you’ll be medically insured and have everything you need with you. I recommend travelling short haul to start and then venturing. When we booked our first holiday I chose Europe because of the healthcare standards and short distance flight, I was expecting at least one hospital visit. He surprised me and we survived and so with a little more confidence a little more understanding that it’d be difficult wherever we went, we’ve just returned from Cape Verde for some winter sun but that was a rather risky regarding healthcare. We have Madrid booked for April and Dubai plans before he’s 2.

I won’t pretend I don’t get nervous, the flights make me anxious plus hygiene, healthcare standards, his response to heat, hydration etc. However, we live most days running on hope so why not live on hope by a pool in the sun for 7 days?!

I hope you enjoyed reading this and found it helpful. If you did please share it with your friends. If you have any tips to add yourself or you have any questions please do drop them in the comments below for other readers to see and for me to answer!

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IMPORTANT: Please sign this petition to fund research and treatment for children with brain injuries. When Jaxons MRI at 4 weeks old showed cysts on his brain we too were told to “wait and see”. Help us make the world a better place for our children who are born differently able to others who just need the right input.

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2 thoughts on “How to travel with a medically complex tube fed baby. You can do it!

  1. Sarah

    Amazing read, although I do not have a child with complex needs, since reading your story I have got so much admiration for you I will be ensuring I offer any helping hands to other mums with the complex miracle children, I have donated for you and Jaxon, he truly is the sweetest little guy xx

    Liked by 1 person

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