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.

It is always completely okay to respond to any question or comment with, “I’m sorry, but I really don’t feel like talking about this right now.”
Answer 1: He has a medical condition and needs a feeding tube in order to get enough nutrition. There’s nothing wrong with him, though. We love him with or without the tube!

Answer 2: He has some medical challenges and we’re working with specialists to figure out the best way to handle them.

Answer 1: No, it’s a feeding tube.

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 1: Actually, she has severe food allergies and it’s not safe for her to have ice cream.

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 1: Thank you! It came from our medical supply company.

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 1: No, it’s not a leash, it’s a feeding tube. Her formula goes from the pump inside this backpack through the tube and into her stomach.

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 1: He’s healthier right now than he’s ever been, thanks to the feeding tube!

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 1: We really don’t know. It could be a few months or it could be a few years, and we’re so thankful that we have a way to keep her nourished and growing until she’s able to eat enough that she doesn’t need it anymore.

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 1: I know it looks like he’s eating, but he doesn’t actually swallow the food yet, so he still needs the tube.

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 1: No, thank you. He has a medically restricted diet so he doesn’t need anything. We brought food that is safe for him to eat.

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 1: You would do the same, you just haven’t had to.

Answer 2: We take things a day at a time.

Answer 1: Not yet, but he will when he’s ready.

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 1: We’re really not sure what’s causing her symptoms yet so we’re working with a team of specialists to try and figure out what’s really going on before we start trying things.

Answer 2: No, but we’ll keep that in mind. Thank you.

Answer 1: We’re testing her for everything her doctors feel like we should test her for.

Answer 2: I’ve never heard of that. What are the symptoms?

Answer 3: Yes, she’s been tested for pretty much everything.