We know some of the challenges that can arise with travelling when you have, or care for someone with, an Inherited Metabolic Disorder. With the holiday season approaching, we asked some of our families to tell us of their experiences with advice and tips for planning and taking a holiday and we received some really valuable feedback which we will share in our series of ‘travel’ themed blog posts.
In our first post we talk to Susie, who shares an informative and insightful review of her recent family holiday to Dubai.
Our son, Alex, is 3.5 years old and he has an Inherited Metabolic Disorder called GA1 (Glutaric Aciduria Type 1). Unfortunately the condition led to brain damage when Alex was a baby so now he has very little control over his body (i.e. he cannot sit, stand, walk, grasp objects etc), he cannot talk and he is tube fed so as you can imagine, it was with some trepidation that we decided to try and take him on a family holiday to the sun this year.
I decided that I really wanted to try and take him away because we haven’t been able to go on a sunny family holiday since Alex got sick and I felt that his older brother was missing out. We had taken a few holidays in the UK and had also taken separate holidays where Alex’s brother had gone places with either myself or my husband but I felt it wasn’t fair to leave Alex at home any longer and he deserved to enjoy a nice family holiday too. I always try to include Alex in what we are doing as much as I possibly can so it’s important to me that we can travel with him and he has the same opportunities his brother has to see the world beyond the UK.
How did you decide on Dubai as a holiday destination, and what research did you do?
We decided to look for somewhere where there would be guaranteed sunshine but it wouldn’t be too hot in March, where there would be excellent medical facilities close by if we needed to get to hospital for any reason and where the flight wasn’t too long…..so we chose Dubai.
We have been to Dubai before so we knew exactly what to expect, it’s a modern city with world class hospitals, ultra-modern hotels, great facilities for families, everyone speaks English and the flight is around 7 hours, so it ticked a lot of boxes.
In terms of research, I tried to think ahead as to what might go wrong when we were away and have a plan for what to do. I researched the hospitals in Dubai and contacted a doctor who is based there for advice about which hospitals would best treat Alex’s condition if he needed medical help. I also asked Alex’s consultant at Great Ormond Street Hospital (GOSH) where I should go in the event of him becoming unwell but she wasn’t able to advise me. Thankfully a friend of a friend lives in Dubai and they recommended an English speaking doctor who was able to give me advice about which hospital deals with paediatric metabolic conditions best (incidentally he recommended the Latifah State Hospital in case anyone is thinking of going to Dubai).
I wanted to check that Alex’s medicines were not prohibited in Dubai because I had read some stories about medicines being confiscated if they were on the banned list. I emailed the Ministry of Health in Dubai but they didn’t respond, so thankfully the English speaking doctor confirmed that Alex’s medicines were allowed but he also advised that we should travel with a note from our doctors here explaining Alex’s conditions and naming all the medications we were taking into the country with us. We made sure that every medicine we took had the sticker from the pharmacy with Alex’s name and date of birth on so that there could be no confusion about medicines at all. We also took a copy of his prescription certificate from the GP as further evidence that the medicines were officially prescribed and they were for him. It was fortunate that we had each bottle labelled with his name on because when we went through security at Heathrow, they didn’t ask to see the letter from his consultant listing the medicines, they just wanted to check each bottle had his name on and they verified it against his passport. I was quite surprised about that, I had thought that they would want to see the letter from the consultant but no – so a top tip would be to make sure that any medicines or feeds you have in your hand luggage must have the pharmacy sticker on them with your child’s name and date of birth.
Did you have to make any special arrangements for travelling, and how did Alex cope with the flight?
Before booking, I researched which airlines have toilet facilities for disabled passengers and I discovered that on some Virgin Atlantic planes, there are actually disabled toilets with enough space to change Alex in the toilet if needed, rather than changing him in the aisle which is what a lot of airlines seem to offer. I couldn’t quite face the humiliation of having to do that so I called Virgin Atlantic Special Assistance and they told me which of their planes/routes have the disabled toilets and one of them was Dubai so that cemented our resolve to go there.
Before booking I also wanted to find out about seating for the plane because Alex can’t sit independently and I knew we would need some kind of supportive seating. When I spoke to Virgin Atlantic Special Assistance they told us that they offer supportive seats free of charge and they also offered for me to come to their training facility near Gatwick and actually try Alex in the travel chair before we took the flight to be sure it was right for him and so that I would know what to expect. I was so relieved to have the opportunity to see Alex in the travel chair before the flight as I had no idea how he would cope on a 7 hour flight in a chair that wasn’t comfortable for him. One of the best pieces of research I did was to attend a ‘Your Guide to Flying with Reduced Mobility’ seminar with Tryb4ufly. It was a whole day dedicated to all aspects of flying with a disability and I found it really useful, on the day you can have a consultation with one of their travel experts about the right seating for your child and you can rent a seat if you need one.
Immediately after booking the holiday I got in touch with Virgin Atlantic Special Assistance again to formally let them know of our flight details and to reserve the travel chair. I also let them know that Alex is tube fed and we would be using his feeding pump onboard. They checked that it was cleared for use onboard (he uses Flocare Infinity pump) so thankfully that wasn’t a problem. They allowed me to have one extra suitcase free of charge to carry all of Alex’s medical and feed supplies.
We also booked special assistance to help us through the airport through Virgin Atlantic and the service was absolutely fabulous! A lovely chap called Andrew was assigned to us as soon as we arrived at the airport and he helped us check in, he let us go through the business class security channel so that we didn’t have to wait, we were able to board the plane first and get Alex settled in his travel chair before all the others passengers got on board. It was a really fabulous service and it really took the anxiety out of navigating our way through the airport with Alex.
We also arrived nice and early at the airport because it is stressful enough travelling with a child with a metabolic condition, I didn’t want to be rushing about as well!
Alex coped really well on the flight to and from Dubai. I wasn’t sure how he would cope with the noise of the plane and the sensation of pressure in the ears when taking off and landing but he did remarkably well and wasn’t upset much at all during the flight. We took his iPad with his favourite TV programmes on it and gave him lots of drinks of water to help equalise his ears and he was ok. We gave Alex his feeds using his pump during the flight and it worked really well, we didn’t encounter any problems with that thankfully.
I have to say that from the moment we started planning the holiday until the moment we touched down back at Heathrow, Virgin Atlantic were absolutely fabulous and did as much as they possibly could to accommodate us and Alex. I would highly recommend them as an airline for disabled passengers.
We at Climb get a lot of enquiries about travel insurance, do you have any recommendations?
Getting the right insurance was one aspect of planning the holiday that I was quite worried about. I looked at lots of quotes online and asked on special needs forums if people could recommend a good company who cover those with complex medical situations. I found in the end the best thing to do was to phone some of the companies that had been recommended by others. It would have been much faster to do it all online and fill in the online medical screening questions but I was terrified that they didn’t give an accurate picture of Alex’s medical situation and therefore I wouldn’t be properly covered if Alex did get sick while we were away. I found that the online questionnaires didn’t pick up the nuances of Alex’s health situation..for example when I entered that he had GA1, the subsequent questions were irrelevant and it didn’t ask if he had suffered brain damage as a result of the condition. I called a number of companies and went through every aspect of Alex’s situation and I got some crazy quotes but in the end I got a decent quote from insureandgo and they were great to deal with. Their sales advisor went through everything meticulously so I felt really confident that they were well aware of all the nuances of Alex’s condition and therefore I would be fully covered in the event of us needing medical help while abroad.
What did you pack to take with you?
In terms of documentation I took with me:
- A letter from Great Ormond Street Hospital detailing Alex’s condition, listing the medications he is on and also the feed products we use.
- A fit to fly letter for Alex, which I got from my GP in the days before we travelled.
- A copy of Alex’s prescription list as proof that the medicines we have for him are prescribed.
- Alex’s emergency protocol information and the documents we have from GOSH regarding how to treat Alex in the event that he needs hospitalisation.
- All the contact numbers for our metabolic team at GOSH in case we might need advice in an emergency.
- All our travel insurance documentation so it was all easily accessible in the event that we needed medical help.
When packing for the flight, I kept trying to think of things that might go wrong so when I was packing I was thinking of what I might need if one of our suitcases got lost or if there was a problem during the flight, so I packed:
- All of Alex’s medicines and feeds into a carry on suitcase as I didn’t want to risk not having them if a suitcase got lost in transit. Anything non-essential like tubes (for feeds) I packed enough for a couple of days in my hand luggage then distributed the rest among the rest of our suitcases.
- A second pump with me in case our usual one stopped working. Nutricia Homeward (the company who provide our feed supplies and equipment) were fantastic and they loaned me the second pump because I called them and asked what would happen if there was a problem when we were abroad. They also said that they could deliver his feeds and usual products abroad if needs be but I decided not to try that approach, I wanted to have everything with me just in case something went wrong!
- A spare button for my son in case we had problems with his current one and we needed to have it replaced while abroad. (A button is the name of the device fitted to his stomach to allow us to feed him directly into his tummy).
- 1.5 – 2 times the amount of feed supplies we would need just in case we ended up staying longer for any reason.
- All the ingredients for Alex’s emergency regimen in hand luggage as well in case he became unwell during the flight.
- I bought ibuprofen and paracetamol once I got through security at Heathrow as I wasn’t sure if I would be allowed to take it through security due to it being more than 100mls.
As well as being tube fed, Alex can eat pureed food orally. He is on a special low protein diet and all of his foods need to be weighed and monitored so we did several things to prepare for feeding him on holiday.
- We brought along enough food to last for the entire holiday in case we weren’t able to get anything at the hotel that would be suitable for Alex to eat. I brought lots of pouches of baby food because Alex can eat them and I know exactly how much protein is in each one.
- I also brought a portable manual hand blender which allowed us to puree foods from the restaurant that Alex can eat like vegetables. This actually worked really well and he preferred eating the real food! The one we used was called the Zyliss EasyPull Manual Food Processor
- We brought digital scales with us to weigh out the feed mixture for Alex’s milk.
- I checked with the hotel before we flew if there was a fridge in the room and luckily there was some space in the fridge so we could keep Alex’s feeds cool. We were able to get ice from a machine in the corridor to keep our ice packs cool so that we could take his bolus feeds out with us and keep them cool during the day.
How did you find Dubai as a holiday destination, and what were the highlights of your holiday?
It was quite a bit hotter than we expected it to be and Alex really struggled in the heat. We tried to keep him cool by getting him in the water as much as possible and also by keeping him in the air conditioned hotel during the peak hours of sunshine. We gave him lots and lots of water to keep him hydrated. I was grateful that he has a button as I could just syringe water straight into his tummy at regular intervals.
There was a water park attached to our hotel and he absolutely loved going in one of their little rubber rings and floating in the waves and to the pool. It was fabulous to see him having so much fun and joining in with his brother. For me, those hours in the water park made all the planning and organising and worrying all worth it because both of my boys were so happy.
We were lucky enough to have some friends staying in the same hotel as us so it was really lovely meeting up with them for dinner and drinks and letting the kids chat and play together. Alex loved the attention he got from my friend’s daughter and it was lovely for us to see him interacting with her, he couldn’t stop smiling.
We did a little boat trip and some snorkelling which was one of the real highlights of the whole holiday. Alex stayed on the boat but my older son was able to snorkel for the first time which was just fabulous. Our friends came on the boat with us too and it was great to share such a special experience with them.
Overall, I am glad we went on holiday and although we encountered some problems it was a successful experience. We had some much needed time away from all the stresses and strains of daily life and it was great that both of my boys were able to participate and have lots of fun!
Did you encounter any problems whilst away, and is there anything you would do differently next time?
Unfortunately Alex had been a bit sick before we left the UK with some fever and although he was fine in the 24 hours before we flew, I think his body hadn’t quite recovered because a couple of times during the holiday he had some fever and wasn’t on great form. We even gave him his emergency regimen one day because he had a fever but thankfully his temperature came back down quickly and we didn’t have to do anything more to keep him metabolically stable.
It wasn’t a particularly relaxing holiday because we were constantly worried about Alex and how he was coping with the heat, if he was ill etc. I think in the future we will try to go on holiday where/when the weather is temperate rather than hot.
If possible I would also try to do both flights during the night as Alex coped better on the outbound flight as it was overnight then the return flight which was during the day.
Having said that I still loved being away in the sun with my two boys and when Alex was with his brother in the water park and in the pool he had the time of his life! My older son had a fabulous time and he loved the fact that his mummy and daddy were both there as well as his little brother.
What are your top tips for anyone considering planning a holiday?
- Call up insurance companies for quotes and be 100% honest about your child’s medical situation, don’t rely on the online questionnaires.
- Book special assistance through the airport if you can, it was fabulous!
- Make sure all medicines/feeds have the pharmacy sticker on them stating your child’s name and date of birth.
- Pack all essentials like medicines and enough supplies to last a few days in hand luggage so even if your suitcases go missing you can cope for a few days.
Thank you so much for sharing your story Susie, the research that you did before booking and travelling certainly put you in the best position to have a wonderful family experience and it’s so lovely to see the photos of Alex being able to fully participate. We hope that you have made memories to last a lifetime!
If you would like to share your experiences of travelling when you have, or care for someone with an Inherited Metabolic Disorder, please get in touch via our contact form or on facebook, we would love to hear from you!