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: 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: 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.