Traveling with a Medically Complex Child

BY SUSAN GRAHAM: VICE PRESIDENT OF MARKETING HEALING HANDS PERSONAL SERVICES

When our youngest daughter joined our family, some people told us that we would never travel again. She was born at 24 weeks and has hydrocephalus, cerebral palsy, a feeding tube, and epilepsy. We knew that things would look different but we wanted her to experience how beautiful life is, just like our typical kids. For our family, that includes travel.

At a year old, we started tent camping, feeding pump and all. We quickly upgraded to a pop-up with a sink, which was followed by Airbnbs. Now 8 years old, Paisley has been to Canada, Mexico, the Bahamas, several islands in the Caribbean, Great Britain, France, and 22 states, including Alaska. We buy patches for her feeding pump backpack to remember all of the strange places we’ve fed her and have a fleet of wagons, wheelchairs, and backpacks that allow her to come with us.

Trips don’t have to be far or expensive to be memorable. Some of our best trips as a family have been to Lake Michigan. Our family loves eating ice cream on the beach and s’mores around the campfire. Trips do, however, have to be planned. Transportation, equipment malfunctions, tours, and sightseeing all have additional challenges when you have a child who uses a wheelchair and feeding pump.

Over the years, we have acquired a few unique skills to help us cope with travel challenges. Each child and situation are different. What works for my family may not work for yours. However, there are a few basics if you want to start traveling with your disabled child.

1. PLAN ON EQUIPMENT FAILURES OR HUMAN ERROR

When we pack, we have a plan A, B, C, and D. Feeding pumps, seizure medications, tube food, and wheelchairs are all essential equipment for us. The year we forgot a charging cord for our feeding pump was a learning experience. Due to contracts, we couldn’t buy one in Florida. Our durable medical equipment (DME) company had to send us one from Indiana. When the package arrived, we discovered that they sent an IV pole clamp, not a charging cord. We ended up feeding our daughter with 60 ml syringes until our DME supplier could correct the situation. Now, we pack two cords, 5 large syringes, extra food, and several extra extensions.

Our daughter uses a blended diet, so when flying, we always pack extra food and medication in our carry-on. If we are delayed, we know she has everything she needs to stay healthy.

2. KNOW WHERE YOU CAN GET ESSENTIAL EQUIPMENT OR MEDICAL CARE

If you’re traveling to another part of the country, research the closest hospitals that could handle your child’s needs. Visiting Hershey Park? Hershey Children’s. Tour of the East Coast? Boston Children’s. London? Great Ormond Street. Taking a trip out west? Find the closest trauma center. If our daughter has a big seizure, pulls out her g-tube, or goes into shunt malfunction, we know we don’t have time to get home. Make sure you can get medical care where you are.

Ensure your child’s insurance will cover a medical emergency. Medicaid does not generally cover hospitals out of state. If we are traveling out of the country, we buy travel insurance and travel medical insurance. Be sure to read the preexisting condition clauses to make sure your child is covered.

3. YOU DON’T GET BONUS POINTS FOR SUFFERING.

Hate camping but want your kids to have the “Great American Campout” experience? Don’t go tent camping. Everyone will be miserable and it will go down as the worst vacation ever in family lore. Trust me. My kids have stories. Instead, find what works for your family. Want to experience the Bahamas but need elevators and medical staff nearby with allergy-friendly food? Try a cruise. Want to put your kids’ toes in the sand but can’t handle a 2-day drive to Florida? Try southern Michigan! Some of their public beaches even have wheelchair mats so you can roll on the sand. Want the camping experience without sleeping on the ground? Rent a cabin or Airbnb. You can even camp in your living room with hotdogs for dinner! Your travel needs to work for your family.

4. KNOW WHO HAS FRIENDLY FACILITIES

1. We don’t like to clean our daughter’s feeding pump in the bathroom. We wouldn’t wash our dishes in a public bathroom, so we don’t clean her feeding pump there. Instead, we’ve found that most zoos, amusement parks, and other kid-friendly venues will allow us to clean her medical supplies at the First Aid center. Disney is the gold standard for this with individual rooms where we can change pull-ups, clean feeding tubes, or change clothes. However, amusement parks around the country often have comfortable, quiet spaces where we can care for our daughter. Hershey Park has a beautiful first aid center as well as Holiday World. Holiday World goes the extra mile and has a sensory room that can be reserved by the half hour to help overstimulated guests. If you can’t find the information on their website, send an email to ask about a location’s facilities before you book tickets.

5. UNDERSTAND WHAT YOU’RE UP AGAINST

1. Large cities like New York, Boston, London, Seattle, Paris, and Vancouver are not wheelchair accessible. Curbs, stairs, subways, buses, and small shops are all challenges if you have a wheelchair user in your travel party. Paisley uses a rigid-frame manual chair that weighs about 30 lbs. Paisley, at 8 years old, weighs about 60 lbs. Taking her on the subway is a challenge. Taking her to an older building, museum, or small restaurant is a challenge. My family deals with this challenge by carrying her. We are a family of 5. My husband, me, our two teenagers, and Paisley. Matthew will generally carry Paisley and a teenager grabs the wheelchair. We’ve done thousands of stairs like this but know this won’t be an option as she gets bigger. In the future, we may have to rent a car everywhere (learning to drive in London will be terrifying), we may try to stay closer to the sites or rethink where we go. However, it won’t stop us from exploring.

2. We recently had the opportunity to travel to London and Paris as a family. We often get uncomfortable questions when we travel in the US and were curious about how people would react to a child in a wheelchair on another continent. It wasn’t something we could research and we had to accept that we couldn’t prepare for it. We found that people were kind and respectful in both cities. It was relaxing to not have a single awkward question and we appreciated all of the offers to help us lift Paisley’s wheelchair. While the cities were not generally accessible, the people were exceptionally kind and welcoming. Paisley’s strongest memories are of croissants and learning how to jump curbs on her own. We love traveling with our kids. Yes, it’s stressful. Yes, it’s work. But there are beautiful core memories that are made along the way. I’ll always remember Paisley naming pigeons in the park, my teenagers eating 8 crêpes in a day, and the sound of waves breaking at night.

Every parent who is raising a medically complex child wants the same thing. We all want our kids to live their best lives. That looks different for each child but the goal is the same. How can we give them the world?