How to Navigate the Holidays When Your Child Has a Feeding Tube

The holiday season is upon us, and it’s hard to imagine this time of year without thinking of all the food that comes with it. Gatherings for Thanksgiving and winter holidays such as Hanukkah, Kwanzaa, and Christmas are often centered around large meals.

For parents of tube-fed children, this time of year can be challenging when attending gatherings outside their homes. We must think about where, how, and when to feed our children in places that may be unfamiliar to us. We also have to consider the “what ifs” and worst-case scenarios and prepare for those situations.

We can’t predict everything that will happen, but we’ve learned a few things over the years that have made holiday outings much more enjoyable for everyone.

Plan ahead if you’re traveling

The holiday season is a popular time to travel for family gatherings, and whether you plan to drive or fly, it’s a good idea to plan ahead as much as possible.

If you’re flying for the holidays, contact your airline ahead of time and find out their medical supply policies (many airlines will allow a free additional carry-on for medical supplies).

To lighten your luggage load, consider shipping certain supplies ahead of time. Most hotels will hold a package ahead of your arrival, so if you have cases of enteral formula and feeding tube supplies, call your hotel ahead of time and see if this is an option. Just be sure to ask the hotel what needs to be included on the shipping label to ensure you get your packages.

If you’re traveling, make sure you have the contact information of your child’s doctor and other medical professionals familiar with your child’s condition in case of an emergency.

Expect the unexpected

Even if you don’t plan to travel for the holidays, you’ll likely spend more time out of the house, running holiday errands and attending various holiday functions.

Remember to pack a bag with extra feeding tube supplies to keep in your car, such as:

• Syringes
• Blended meals or formulas
• Replacement feeding tube buttons
• Feeding tube extensions
• Feeding pump bags
• A portable blender if you do blended feeds
• Proper cold storage if you have blended feeds
• Wipes or paper towels
• Change of clothes for your child
• Ziplock bags to put reusable supplies in to be cleaned later, and also for any dirty clothes

This may seem like a lot, but I can tell you from experience that if your child’s tube becomes disconnected or dislodged, or they have a projectile vomiting episode away from home — these things will come in handy!

Don’t be afraid to ask for help from family and friends

If you plan on getting together with family or close friends, chances are they will be familiar with your situation and know what to expect when you feed your child.

Let them know ahead of time if you need any help or have any special requests, like a designated quiet room or area to use if the gathering is crowded and you need space to feed your child or give them medications via their feeding tube.

If you’re feeling particularly stressed or unsure about an event, declining an invite is okay. Your emotional well-being and your child’s comfort are a priority.

I’ve declined many invites in the past because my spouse was working, and I would have had to manage the event alone with four small kids. Trying to wrangle multiple little people in an unfamiliar place is hard enough without worrying about fitting a tube feeding in somewhere or how to navigate a hasty exit if something goes wrong.

Make sure your child has a comfortable, safe place to sit and feed

Since many tube-fed kids are at risk of aspirating, ensure there is a place where you can safely position them while they’re getting a feeding. Finding an appropriate place to feed may be challenging if you’re attending a large gathering with a lot of people and activity.

In this case, it may be best to do a quick feeding right before leaving the house so that your child isn’t too hungry when you arrive.

If possible, try to find a place away from the main event where it’s quiet, and your child can relax. This may be a separate room or even just a spot in a corner where there isn’t as much commotion.

Many families with tube-fed kids have feeding chairs, which position the child correctly during feedings and can be easily transported to different locations. If you don’t have a feeding chair, a portable high chair with good support can work too.

If your child isn’t mobile but can sit up well, you can use a soft backrest pillow with arms and a blanket for them to sit on for a brief, supervised feeding in a quiet spot.

Be prepared for questions from strangers and don’t tolerate rudeness

If you’re at a gathering with many strangers, there are bound to be some that have never met anyone with a feeding tube, and it can make for some awkward moments when it comes time for a feeding.

Encourage people to ask questions if they have any. Be prepared with a short explanation of what a feeding tube is and why your child has one. You don’t need to go into great detail, but this will help the conversation flow more smoothly.

You also don’t need to tolerate rudeness; we’ve all had at least one encounter that ended badly. Remember that your child having a feeding tube is nothing to be ashamed of; but if someone is staring or making you uncomfortable, you can politely excuse yourself and find another spot to feed.

Give yourself a little grace during the holiday season

Trying to navigate all the holiday things while parenting children with multiple medical needs is no easy task. It’s one of the year’s most hectic, stressful times, and the “to-do” lists seem never-ending.

Remember to take time for yourself, even if it’s just a few minutes, to relax and take some deep breaths. Have a backup plan in case things get overwhelming, and don’t be afraid to ask for help.

Most importantly, try to enjoy the season and the time with your loved ones as best you can. Creating memories is what the holidays are all about, after all.