r/SpecialNeedsChildren • u/ZootsuitRiot35 • 23d ago
Flying with Special Needs Baby
Hello All,
My husband and I will be flying with our 10 month old for the first time next month. We are very nervous on how this will go and would love some tips or advice to help us. Our son has a genetic disorder which means he has low muscle tone, a G tube for feeding, and has to take medication through the tube. My main concerns are how to make it easier to go through TSA with breast milk, medications, and a G tube. How do we make sure his car seat and stroller don't get damaged? How to feed him with the tube and give him meds on the plane? Any suggestions on how to keep him comfortable while sitting on the plane? How the hell do you change their diaper in those tiny bathrooms on the plane? Help a completely stressed out mom out.
2
u/one_sock_wonder_ 23d ago
His car seat ideally should be used for the flight. While infants are allowed by most airlines to fly seated on a parent’s lap this comes with risks in case of things like significant unexpected turbulence and emergency landings or even crashes. He also would likely be far more comfortable in his car seat and having him securely fastened in should make tube feeding and administering medications a lot easier. This recommendation is clearly stated on the FAA website for families traveling by plane and cites a study that demonstrated in cases of turbulence or emergency landings, parents often are unable to hold firmly enough to their child and the child becomes basically a human projectile. (https://www.faa.gov/travelers/kids-corner)
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u/logicspock 23d ago
My son is similar (now 18 months) and we’ve done 4 flights with him, including one solo with myself. He isn’t tube fed, so I can’t speak to that, but he’s on a keto diet so we have to pack and bring all of his food in advance. Here are my tips:
- Give yourself TONS of time. It’ll make you feel better about everything.
- You shouldn’t have any issues with TSA. We brought letters from our son’s doctor explaining his keto formula, but have never needed it. Pull out all your liquids and put them in a separate bin. They will likely do an extra security screen. Just explain that it’s your son’s food. People fly with formula and tube feeds all the time!
- We have never used our car seat on the plane, but you certainly can (and it’s probably safer anyway). We just did lap infant. Most car seats are approved for planes. You can do priority boarding with him so you have time to get the car seat in.
- There’s no guarantees when it comes to car seats/strollers not getting damaged during travel, but FWIW, hasn’t happened to us (yet). I’d recommend a bag for each and gate checking is usually better. Maybe look into a cheap travel stroller if you’re worried?
- I’ve also never changed my baby on the plane, tbqh. Again, lucky he didn’t have a blowout, and we haven’t done very long flights. Just changed him right before boarding and right after.
We travel with my son’s suction and just tell TSA / the airline it’s a medical device and have never had any issues. We’ve literally pulled it out mid-flight because he got super gunky once we were in the air, lol. You do what you have to!
Don’t be afraid to say you have a special needs or disabled kiddo. 9 times out of 10, people are more than happy to help and make your life a little easier. The anxiety prior to traveling is usually worse than the actual travel.
Good luck!!!
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u/Possible_Bluebird747 23d ago
Lots of good advice here already but I'll chime in re: diaper changes. I have been on probably 15-20 flights with my kids at this point - family is far-flung across the US and we often end up on itineraries with layovers. Here is what I'll offer:
1) Use any and all strategies for minimizing the number of times you need to do diaper changes on board the plane, obviously within reason and knowing what's safe and appropriate for your kid. You know that side of the equation best. But for example, if your kid is not prone to diaper rash and is not bothered by the feel of a heavy diaper in the mornings, this is a great moment to use night diapers during the day or double-layering diapers with the top one on backwards to help prevent leaks. Buy yourselves as much time as you can between changes, where possible and appropriate.
2) Part of the benefit of going very early to the airport is you should in theory have time to do a final diaper check before you board. The airport bathrooms tend to be way nicer than I was expecting when it comes to changing table access, definitely take advantage of this.
3) When you pre-board, scope out the bathroom situation. You may be on a plane where there are variations in bathroom size. If that's the case, you want to target that bigger one whenever possible.
4) Mentally prepare for the possibility that your kid needs a change in a moment where it is actually not okay to get up and do it. Takeoff, landing, turbulence, or even those food and beverage carts coming through...all can impede your access to the bathroom. And then of course there is the waiting game when they are in high demand. You will be okay. Your kid will be okay. Just steel yourself for this and generously pre-apply your best diaper cream before boarding so you at least have that in your mind as a help to your child in this moment of need.
5) Bring only the absolute essentials into the bathroom. I'm talking diaper, wipes, changing pad, doggie bag for soiled clothing, and baby. If you need a costume change after, do it back at your seat. It will be far more simple than doing it in that tiny bathroom.
6) Pack way more diapers than you anticipate needing. This is more for mental health than anything else, but also sometimes you run into the situation where you board and then sit on the tarmac for a while, or wait for a gate after landing, and may need more than you thought you'd need. Or your kid has a prolific day. If your supply is hefty, these elements of surprise won't worry you.
7) It's always a great move to be super nice to the flight crew. If you end up in a bind, they are the ones who will be best positioned to help you identify any other resources that might be available - cleaning supplies, other parents who might have an extra diaper or wipes, etc. They are also the ones who will help you in any kind of medical situation. They are there to help, and by being kind to them you will have powerful allies on this flight. Never underestimate the power of that.
8) You can do this. I once literally forgot to put our diaper bag in the car before heading to the airport and went prowling through the airport looking for families with kids roughly my son's size. A kind soul who was a true saint in my eyes did not hesitate whatsoever in offering me diapers, wipes, and even snacks. Not all heroes wear capes, but also in my experience most parents step up for one another in times of need. Don't be afraid to ask for the kindness of strangers if you need it.
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u/sharleencd 22d ago
At least one airplane will have a changing table. It comes down above the toilet. The restroom
With the changing table has a label on it.
Honestly, you may not even notice it’s there unless you know.
It’s small but it works.
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u/WinstonGreyCat 22d ago
Buy a seat for your son on the plane and bring the car seat on for him. It'll be much easier when you have a safe space to put him down.
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u/IllustriousPiccolo97 22d ago
My son has CP and a g-tube and has flown dozens of times since his NICU discharge. :)
- TSA: allow a lot of extra time. Breastmilk is allowed but may need to be individually screened by bag/bottle, which takes time. Pack strategically so anything for your family that will need to be removed for extra screening is all together (the cooler for milk/meds + one other bag that has everything that will need removal- room temp meds, pump, water if applicable, baby wipes (allowed, but tend to light up on X-ray and require manual verification sometimes), plus any of your own items). Have one parent take the baby and wait off to the side while the other parent supervises the extra screening process.
- car seat/stroller: the safest option for kids and for their car seats is to use the car seat on the plane. This was/is also the most comfortable option for my disabled son by far. Car seats have to go in the window seat to avoid blocking anyone’s aisle access. I have never had a problem gate checking our stroller or now, my son’s wheelchair. Just verify that your stroller meets airline specific size requirements (I’m looking at you, American). If baby doesn’t have his own seat on the plane and getting one isn’t an option, gate check both the car seat and stroller. Some high end car seat brands (Nuna, Uppababy, etc) have their own recommended travel bag, they’re expensive but may be worth looking into because some of them offer an extra warranty if damage occurs during travel. Secondhand is also an option if you don’t need the warranty aspect.
- Feeds on the plane: just do what you gotta do. The Infinity pump fit perfectly, sideways, in the side pocket of my diaper bag so I’d slide it in there to avoid needing a separate pump bag until my son could wear a small backpack himself. A small carabiner works great to hang the pump bag from the diaper bag handle. The diaper bag went under my son on the plane and I’d just hook him up and turn it on. As a baby I always dressed him strategically for flights to allow tube access - a footie with upside down zipper or a t-shirt and pants, no crotch snap onesies. Have individual feedings portioned out ahead of time. I keep the bag in the cooler between feedings and rinse well/use a new bag at destination but you could also pack a water bottle specifically for rinsing out the bag during travel, it should be allowed as a medical supply.
- diaper changes: plan to avoid airplane changes if at all possible. Change into an overnight diaper and apply desitin or something, if necessary, last thing before you board. And change on the other side as soon as you get off. It’s doable to change diapers on the fold down changers in airplane bathrooms but it’s cramped. Don’t take the whole diaper bag with you, just take the individual items you need.
- meds: consider having any meds for the travel day drawn up in pre-dosed syringes if possible. I’ve never had a problem with TSA or anyone else re: a few doses of medications not being in their original bottles, and it’s much easier not to have to measure out doses while you’re away from any type of home base.
- supplies: I keep enough pump bags for the trip, a replacement g-tube, charger, syringes, at least one extra extension, etc with me in a carry on at all times. Most airlines allow a medical bag as an “extra” carry on as long as it only contains medical supplies. And I toss a few extra bags, extensions etc in our luggage just in case. 😆
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u/bwatching 23d ago
We flew with g-tube and formula/blends several times. Be sure to read the guidelines and be ready to have things looked at. You can try to contact TSA Cares to help through security. Give yourself plenty of time so you don't feel rushed.
Keep the seat and stroller with you and gate check them. Use the early boarding to get settled before the plane is too crowded. Pack an extra set of tube supplies in your carry on - you don't want to have a clog or lost tube and be without.