Nearly every parent of a child with a feeding tube will be asked questions. Sometimes the questions are from a place of genuine curiosity and interest, and sometimes they are hurtful or shocking because of the way they are phrased or the tone in which they are asked. When parents are still in the early phases of tube feeding, it can be difficult to answer the questions asked by family members, friends, and complete strangers. Even the most well-intentioned questions can be upsetting when they are asked at the wrong time. People often speak without realizing how they are coming across, and unless they have been through very similar circumstances, it is very difficult for them to understand how the things they say can exacerbate the emotions you are already feeling.
If you do choose to answer, just as important as the answer you give is the tone with which you give it. Part of our mission at the Feeding Tube Awareness Foundation is to raise positive awareness of tube feeding so that families have the support they need. Many times, people ask questions because they’ve never seen a feeding tube before and they’re curious. Your answer will set the stage for how they view feeding tubes. It’s difficult to put a positive spin on the situation when your own emotions are in turmoil, but if you can respond with a positive attitude and focus on the benefits it provides, the person you’re talking to will pick up on that.
Here are some of the commonly asked questions and a few suggested answers.
Answer 2: He has some medical challenges and we’re working with specialists to figure out the best way to handle them.
Answer 2: No, that’s his feeding tube. He has trouble swallowing/eating/digesting, so he gets all of his food through the tube.
Answer 2: She’s not able to swallow safely, and if we gave her ice cream, it could go into her lungs and cause pneumonia.
Answer 3: She has a difficult time with certain textures and temperatures of food, and if we try to feed her things she’s not comfortable with, it will make things worse. We’re working with therapists to help her overcome her oral aversion.
Answer 2: Thank you! It’s a feeding pump backpack and we got it from our medical supply company.
Answer 3: It’s from ______________ (Target, Walmart, Amazon).
Answer 2: She’s not on a leash, she has a feeding tube. Her backpack makes her tired so I’m carrying it for her to give her a break.
Answer 3: The backpack has her feeding pump in it, but her balance isn’t quite good enough yet for her to carry it by herself.
Answer 2: As long as he has his feeding tube, he’ll stay that way!
Answer 3: He’s come a long way since he got his tube. It’s the reason he’s doing so well right now.
Answer 2: She’ll probably always need the feeding tube, and we’re okay with that.
Answer 3: When she can eat enough food and a wide enough variety of food to meet her nutritional needs, drink enough fluids, take all of her medications by mouth, get through a cold and flu season without using the tube at all, and go for 3 to 6 months without using the tube at all, then we’ll be able to remove it.
Answer 2: He eats a little bit of food, but he won’t eat enough to make him grow, and he doesn’t drink enough water to stay hydrated.
Answer 3: Because of his food allergies, he’s only able to eat two foods right now, so that’s not enough to give him the nutrition he needs.
Answer 2: No, thank you. He gets everything he needs through his feeding tube.
Answer 3: No, thank you. He’s not able to eat food, but could you please bring him a cup of crushed ice?
Answer 2: We take things a day at a time.
Answer 2: We’re really not focusing on eating right now, but when the time comes, we will.
Answer 3: If we get to a point when he’s able to chew and swallow safely, then we’ll work on getting him to eat, but there are other things that are more important right now than eating.
Answer 2: No, but we’ll keep that in mind. Thank you.
Answer 2: I’ve never heard of that. What are the symptoms?
Answer 3: Yes, she’s been tested for pretty much everything.