Flying with a medically fragile and disabled child is a unique and sometimes tricky experience. Matthew made a few flights. I will say, it takes a few more steps than organising your average trip.
We made the effort to make it happen, and I am so glad we did. Matthew saw 4 different Australian states, we reflected that lots of Australians would probably never see that much. This was something that the paediatrician, the pal care team and I discussed a several times leading up to The Most Difficult Day.
1. If you have a Nurse Care Coordinator, Complex Care Nurse, or any kind of Nurse Care Manager, call them first.
Advise them of your trip plans, they can help immensely. When we planned our first trip we didn’t do this first. You will see during the process why this is the best way to start.
When Matthew flew the first time, we were invited to Perth for a close friend’s 30th birthday. The party would be in a beach house not far from Margaret River in the state of Western Australia.
Our friend had come to Melbourne for many of our precious moments. Including being there for parts of Matthew’s club feet treatment in his early weeks. She was even there in the moments after he passed away. It was definitely not something we wanted to miss.
2. Book with a Major Airline.
We booked our flights with a low cost airline – Jetstar – then a month before our flight, we contacted their special services hotline or helpline. We advised them we were flying with a medically fragile child. He would have medications, and equipment that he needed to fly with.
Jetstar is owned by Qantas, it doesn’t have it’s own helpline. The number links directly to Qantas. The Qantas employee who answered the phone informed us that Matthew’s feeding pump couldn’t be in our carry on and certainly couldn’t be used during the flight.
In those days Matthew was on 4 hourly feeds. The flight to Perth is 3 1/2 – 4 1/2 hours. By the time we did check in, flew and arrived it would much too long between feeds.
We had always had trouble with his weight, he was labelled ‘Failure to Thrive’ when he was less than 6 weeks old. So we needed the pump on the plane.
The issue we faced was that the type of battery found in the infinity pump was not signed off by engineers for the TYPE of plane our flights were booked on. They would authorise it in our checked luggage but we would need to submit for an engineering approval letter to have it in the cabin and to operate it.
We had several long heated exchanges with the Qantas employee who continually recited; ‘It’s against Jetstar policy.’ ‘I don’t know, it’s against THEIR policy.’ We contacted our complex care nurse coordinator.
For that trip, the nurse took down all our flight details and location plans for the trip. She contacted the airline directly. (See? Should have called her first. Not all nurse supports are this proactive, but the airlines take their word very seriously.)
3. Contact the Airline at least 6 weeks before your flight.
Our nurse got the same answer from the airline ‘the pump cannot be used on this aeroplane without an engineering letter.’
This would take at least 6 weeks to organise.
We had contacted the airline around a month before so at this point it was too late.
4. Get a Medical Authorisation Form.
We would also need a Medical Authorisation Form for him to be allowed to fly. These can be downloaded from the airline website by anybody but need to be signed off by the patient’s doctor.
The nurse called us back.
Jetstar had admitted they couldn’t support us. They re-booked our flights with qantas free of (extra) charges and the nurse had it all sorted! Our list of equipment, Matthew’s authorisation to fly all signed of by a registrar on his team.
With the medical authorisation form, you may have found as I did, that doctors don’t put enough detail and often forget to include things when filling out forms. Things that families flying with a medically fragile child, need the airline to understand. Another reason why support from your nurse can be helpful.
I found as I grew more confident with Matthew and his condition, I actually began completing the forms for the doctor, lists of equipment, symptoms, condition labels etc. Leaving the things I wasn’t sure on, or that would need the doctors input, and if possible pointing those thing out when you hand the document over for signatures.
The document also needs the flight details, because the authorisation is specific to the airline and the flight plans you have with them.
5. Inform the Local Children’s Hospital of your plans.
The nurse also contacted the Children’s Hospital in Perth. She informed them of Matthew’s condition, what happened when he had to present in case of emergency, the support we normally required and our dates of travel.
The trip went so well, we never needed to contact them for further assistance, but it was very reassuring.
6. Do you need a Respiratory or Specialist review before flying?
During those weeks of preparation we had a Respiratory team review. I asked if they could predict how Matthew would handle the changes in atmosphere, pressure etc.
The respiratory consultant admitted we didn’t really know how he was going to go.
Matthew had been diagnosed with Chronic Lung disease fairly early on, but it was due to his hypotonia rather than the condition of his lungs.
The doctor explained said,
‘Sometimes they booked families who were planning on flying with a medically fragile child, into a pressure chamber to test the patient’s response.’
We briefly discussed coming back the following week to do the test, but the answer would be to put him on oxygen. Which we were already taking with us so it wouldn’t be worth the hassle.
7. Transportation issues
The next big problem we had was mobility.
Especially to and from the aeroplane after check-in.
Matthew was small enough to still be using his pram, but it laid almost completely flat to support his body, as he didn’t have the tone to sit.
We discovered with special permission you can take the pram all the way to the boarding counter and hand it over there.
Dropped off to the airport in our own car, we took our car seats with us. We checked the car seats into oversized baggage, there were no extra charges for this.
Luke had booked a hire care at the Perth airport, so we just had to make it there.
When we arrived in Perth they hadn’t coordinated bringing the pram to us so they offered the complimentary red stroller. Matthew only just fit. He was sleeping so we got away with it, otherwise the lack of support would have seen him tipping himself over the sides or out the front.
When we got to oversized baggage claim they had lost one of the wheels on his pram! The pram was now useless. We had to except the loan of the complimentary stroller, just to get him to the hire car.
If you have detachable parts I would secure them firmly to the rest of the equipment.
During the holiday they replaced the wheel, and on the way back Luke packed the wheels into our luggage. Which of course meant we had to carry him or use one of those strollers again.
8. Do you need extra support to sit in the airline seats?
This trip Matthew sat on my lap for take off and landing, awkward because I was also pregnant at the time. As we all know airline seats do not provide much support!
We also flew when Matthew was older, they provided us with what is known as a ‘H’ harness. It is added to the standard seat and seat belt.
It has a strap that goes around the back of the seat. The tray behind is put down while you put it on, then stowed away afterwards. Then two Velcro straps go around the original seat belt and up to the strap you have attached to the seat higher up. This creates shoulder straps to provide more support.
It’s actually super simple, don’t let me confuse you.
I found it very limited in it’s usefulness though. We only used it for the required take off and landing, as he couldn’t sit properly with it on. It didn’t really compensate for his lack of tone.
I found these commercially available ‘H’ Harnesses, which seem even more suitable than the ones provided.
Since we last flew, some airlines (in Australia) have authorised specialised seats. They are designed specifically for children with disability, which would have made it much safer and more comfortable for Matthew to fly, especially for airway protection.
Matthew had a Carrot 3000, one of the now authorised seats in the car. I think you might also be able to use it in the aeroplane wheelchair (made to fit down the aisles.) Which would make getting on and off the plane much safer and more manageable.
9. Get some supplies delivered to your destination.
We did our calculations and realised we would have to carry A LOT of formula, so we called our supplier and asked if they could make a delivery to another address. They were happy to do so, especially because it was delivered to Luke’s uncle and aunt in Perth.
I am not sure how we would have managed the amount of formula we needed. We had everything else to carry as well as Matthew and his older brother.
The good thing is that the airlines can’t really limit the weight and amount of baggage for a person with a medical condition. So we never had to worry about that.
Have you flown? What issues did you face?
Flying with a medically fragile child is a unique as our children. However, if I can answer questions let me know.