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Traveling with Hydrocephalus and Spina Bifida: Must-Know Tips

March 21, 2025

By: Sierra Smith, Support and Education Program Assistant

Tips for a Smooth Journey When Traveling with Hydrocephalus and Spina Bifida

Traveling with hydrocephalus and spina bifida comes with unique challenges, but with the right preparation, you can enjoy a stress-free trip. Whether you’re flying or taking a train, understanding accessibility options, requesting assistance, and planning ahead can make all the difference. As someone who has navigated airports, train stations, and new destinations with these conditions, I’ve learned valuable tips along the way. In this blog, I’ll share insights on how to make travel easier, from booking your trip to arriving at your destination with confidence.

Traveling by Air with Hydrocephalus and Spina Bifida

For me, air travel considerations starts at the booking process.  

  • When purchasing a flight, you can request assistance. 
  • Airlines will typically ask a few questions about what type of support you need.  
  • This allows them to prepare in advance if you’ll be traveling with a mobility aid or require help at the airport. 

It could just be my anxiety talking, but I like to arrive at the airport at least two hours before my flight. This gives me plenty of time to:  

  • Confirm that my gate actually exists (I know I’m not the only one!)  
  • Relax before boarding.  
  • Check-in with the gate agent.  

Did you know you can request pre-boarding if you have a physical disability?  

  • You do have to ask, but most gate agents are understanding and have no problem allowing me to board early. 

Let me backtrack a little, though. Before even going through TSA, I recommend:  

  • Checking in with your airline’s disability services desk. Airlines have staff dedicated to assisting passengers with disabilities, guiding them through TSA, and ensuring they reach their gate.  
  • Utilizing the TSA Cares program, which allows you to request support from a Passenger Support Specialist (PSS) to help you navigate the airport if you have an invisible condition like hydrocephalus. 

TIP: If you’re a fellow wheelchair user, ask the gate agent if your wheelchair can fit in the cabin storage space.  

  • Mine doesn’t, but I’ve been allowed to store my wheels and seat in the cabin, meaning only the main frame needs to be stowed in cargo under the plane. 

During boarding, I can stay in my wheelchair until I reach the plane doors.  

  • At that point, I assist in disassembling my chair, handing my wheels and seat to the flight attendant, and head to my seat. 

Regarding my hydrocephalus, I’ve flown six times and have only experienced slight issues with takeoff and landing.  

  • Chewing gum helps with ear pressure and keeping headaches at bay.  
  • Occasionally, I’ll get a mild headache after landing, but it usually fades with rest.  

Speaking of rest—I cannot stress enough how important it is when traveling!  

  • Take time to decompress when you get to your hotel.  
  • Some people even choose to arrive a day or two early just to give themselves time to recharge, which can make the rest of the trip much more enjoyable. 

Traveling by Train (Amtrak) with Hydrocephalus and Spina Bifida

Train travel is my preferred mode of transportation since I can stay in my wheelchair the entire time. I primarily use Amtrak, but I know there are other train services available. 

There was a lot to learn about traveling by train for the first time.  

  • I didn’t know that there are different types of train stations—some are fully staffed with amenities, while others are just simple platforms.  
  • When booking your ticket, pay attention to what type of station you’ll be departing from and arriving at. I prefer full-service stations because I know I’ll have access to assistance if needed. 

Amtrak has designated workers called Red Caps who help passengers with disabilities:  

  • They assist in getting to trains on time and boarding successfully.  
  • The Red Cap check-in is usually in a central location and easy to find. 

In my experience with Amtrak:  

  • You typically keep your luggage with you, but you may need to place it in a designated luggage area in the train car, depending on the size. 
  • Amtrak offers a checked bag policy as well.  
  • Since I usually travel solo, managing luggage can be tricky. My parents and I have found that securing my suitcase to the back of my wheelchair with bungee cords works well. I’ve recently started using baggage straps when flying and am looking forward to trying them at the train station next time.

There are designated accessible train cars for wheelchair users.  

  • Red Cap assistance is invaluable because they communicate with onboard staff to ensure I reach the right car with enough space. 
  • Space inside the train can be tight—maneuvering my wheelchair through the train doors and into my seat isn’t always easy. I’ve definitely tipped my suitcase a time or two while boarding! 

Another thing to keep in mind:  

  • While Amtrak trains have accessible bathrooms, they are still relatively small.  
  • I recommend using the facilities at the train station before boarding, as they are much more spacious.  
  • Accessible train cars do not have food service, so be sure to bring snacks or eat at the station before boarding—especially if you’re traveling solo, as you won’t have access to the café car. 

When disembarking: 

  • A member of the onboard or ground crew will usually let you know they’re aware of your need for assistance and will place a ramp once other passengers have exited. This extra confirmation helps ease my travel anxiety.  
  • Depending on the station, a Red Cap may be available to help you navigate, or you may need to follow signage to reach the parking area.  
  • I highly recommend researching your destination station in advance to understand what accessibility features and amenities are available. 

I haven’t experienced any hydrocephalus-related issues while traveling by train, but I will caution you:  

  • It can be a bumpy ride.  
  • If you struggle with balance concerns, walking on and between train cars may be difficult.  

Like with air travel, I like to take a little time to decompress and relax when I have reached my destination. Travel, in any form, can be exhausting! 

Other Travel Considerations for Hydrocephalus and Spina Bifida

Getting Around at Your Destination 

Once you arrive, you’ll likely need to arrange transportation from the airport or train station to your hotel.  

  • I have learned Uber XL is often the best option to ensure space for my wheelchair.  
  • If this isn’t an option, a wheelchair-accessible taxi may be available.  
  • You may need to explore public transportation options.  
  • Research options ahead of time so you’re prepared.  

Hotels and Accommodations

When booking a hotel room:  

  • I like to call ahead to confirm accessibility features.  
  • Every hotel is different in the types of accommodations they offer.  
  • It’s important to make sure your room meets your specific needs! 

Embracing the Journey with Confidence

Traveling with hydrocephalus and spina bifida comes with its challenges, but with the right preparation, it can also be an exciting and rewarding experience. Whether by air or train, knowing what to expect and planning ahead can make a huge difference in reducing stress and making your journey smoother.  

Over the years, I’ve learned that patience and self-advocacy are key.  

  • Don’t be afraid to ask for assistance when needed. 
  • Take breaks when necessary.  
  • Most importantly —enjoy the adventure! 

Resources

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