Nana's Flying Advice

Advice on Flying with a child with Type 1
Spinal Muscular Atrophy


Try to call the airlines at least 3 weeks before you leave and tell them what machines you have to use on the flight.  Make sure you have machine product numbers and the vender phone numbers also .
Get all the names of people you talk to.
We start packing  for our flights to Palo Alto a day or two day before we leave and make a check list of what we need to take. This is just for a 3 day 2 night stay.

We have a check list of everything we need to bring:

Marine battery (Plug it in to charge 2 days before we leave .
If they give you any hassle over the machines that you carry you tell them that these are vital machines and if anything happens to these machines they costs thousands of dollars and you are holding them responsible. Then tell them you want their name for whom to sue if anything happens to the equipment or your child. I had to only use this statement once and they let us carry on what we needed to. We have not had any hassle since the Airlines broke Elizabeth's cough asst almost two years ago in October 2004.
Big Suit case we do not to carry on.
1 pack diapers
Tylenol and Motrin
2 3 ml syringes and one 60ccs syringe
3 days worth of clothes and a few extra for Elizabeth
Tolerex packages enough for 4 days (Just in case of a problem or delay)
blender in the box
supplements and baby food for her formula
Food bags (4)
extra G-tube kit, extra suction supplies
extra suction caths, extra canister and extra top to suction machine. (its been broken several times in security)
extra probe for pulse ox
tooth brushes etc.....
Elizabeth's kid kart is taken to the gate

The carry on's:
Birth certificate, drivers license There has to be at least two adults flying with a child with Type 1 SMA.
(Make sure you test the marine battery a few days before you go incase there is a problem)
Marine battery with adapter
Feeding pump (Enterlite Infinity with 24 hour battery)
Pulse OX (GE 24 hour battery)
IPV wrapped in Blue jeans in small suit case with rollers
Big duffle bag for cough asst and all the adapters for all the machines, Pulse ox and nebulizer and tubing for the cough.
Bipap carry on bag with humidifier and in that is a bottle of distilled water in that
a diaper bag, with food pump with small hand toys like Polly pockets, 4 diapers with a small lunch box with ice packs with breast milk,med , Primadophlius and nebs and 500ccs of Elizabeth's formula in feed bag
Security can go real smooth or a real pain.... depends. Just be nice and make a few cards with child's web-site. It makes it easier for travel and they are a lot nicer I walk through with Elizabeth and let them check out her kid kart. We give security SMA Awareness Bracelets with cards with Elizabeth's picture and web-site. They remember if you go through the next time and they are working.
Just show them everything you have The airlines said we it needs letters of necessity are needed for all carry on machines
We also talk to agent at the gate and tell them what we have and we have to start loading early because we need help or we need to make several trips.
Elizabeth has a seat of her own and she lays flat on the seat or I hold her. Everything for bipap is set up before take off , Bipap and humidifier is plugged into the marine battery . If she falls asleep we leave bipap on whole flight if not then we take bipap off after we have reached our altitude then put back on when we get ready to land.
We have a Alpha Omega car 3 in 1 seat that we store with baggage we take with us. She can not sit up long in a car seat. It lays flat but she is almost out grown it.
Yes ,this is a lot of work but you know these kids are worth it.

Marine battery approved for air travel

Feeding Set Up and Humidifier Set Up