Positive Tube Identity
When my daughter was first discharged from the NICU with a feeding tube, the question I was asked over and over again was, “Does she still have her feeding tube?” Sometimes I heard its counterpart, “Is she eating yet?” which came repeatedly from well-meaning friends, relatives, doctors and therapists. My husband, who is in the medical field, actually had colleagues shouting across the halls inquiring about our daughter’s initial difficulty eating orally. Few people ever asked if she was meeting her milestones, having seizures or sleeping well at night. Instead, people seem fixated on our child’s feeding tube, as if it was the most defining part of her existence.
The message I received loud and clear was that having a child who uses a feeding tube is not acceptable in regular society. The feeding tube embodied my child’s differences. It was as if she was permanently medicalized simply because she required a medical device to help her eat. If she could just get rid of that darn feeding tube, she could then be viewed as “normal” in their minds—even though she wasn’t.
While part of me understands why others fixate so much on oral eating—after all, feeding your child is just about the most fundamental task of parenthood—the other part of me is perpetually frustrated by the negative associations most people have with feeding tubes. I believe we do a great disservice to our children by creating an environment in which their method of obtaining nutrition is associated with failure and negativity.
I believe it is far better to help our children understand the positive aspects of having a tube, thereby allowing them to develop a positive, healthy identity and self-image. In other words, we need to view the feeding tube as a technological aid that helps our children thrive, and not demonize it with stereotypes, misconceptions and other negativity.
Negative Imagery of Feeding Tubes
Instead of viewing feeding tubes as simple devices to help children live and grow, most people have a stereotype of tubes as sterile medical devices used by very sick people who fail to do even simple things, like eat. These stereotypes in turn influence friends who don’t know much about feeding tubes, relatives struggling to accept a child with differences, the media and even medical professionals, creating a constant stream of negative message about feeding tubes.
Feeding as a Requisite Task of Parenthood
The stereotypes of parenthood—repeatedly conveyed by all our friends and relatives, parenting sites on the Internet, and every book we read—greatly influence our perceptions of feeding tubes. Parents feed their children; feeding your child is the most basic tenet of parenthood. If a parent can’t feed his child in the normal way, he often feels as if he is failing his child. Parents may begin to think that they themselves are the cause of their child’s supposed feeding failure and tube dependency, simply because they cannot feed their child orally enough to get rid of the feeding tube.
Friends and relatives may continually send negative messages due to lack of understanding, experience, or fear of the feeding tube. Some may literally be frightened by the presence of a tube, which may seem complicated or overly medical to them. These relatives or friends avoid the child and the family as a whole, afraid to even interact because of their fears.
In many cases, a well-meaning friend or relative simply thinks the parents are not trying hard enough to feed their child or are feeding incorrectly. The attitudes of these relatives can be the most painful of all because of the inherent criticism within their belief. They may even convey their incorrect perception directly to the child, shaming her and derailing her self-image. Their constant messages reinforce that not only has the child failed to eat, but the parent has also failed to entice the child to eat.
Struggles with Acceptance of Differences
Parents and other relatives also may struggle with acceptance of the child they have received. Any child with a feeding tube is noticeably not perfect by society’s usual standards, and the negative messages from friends and relatives about feeding tubes make this realization even more excruciating. Parents and grandparents must mourn the loss of the child they conceived in their dreams, and instead accept the child they have received. This process takes time, and many parents of infants using feeding tubes are still in the formative stages of denial, mourning or anger.
During this time period, many parents fixate on and demonize the feeding tube as the most visual representation of difference in their children. Some parents become obsessed with getting rid of their child’s feeding tube. They bargain, beg and plead with their children to eat. They send their children to expensive inpatient programs to wean them off of tube feedings, or have feeding therapy five times a day. Kids are sometimes so pressured to eat that they begin to rebel against the pressure, eating less and requiring more tube feedings. Some parents mistakenly believe that removal of the feeding tube will dramatically change society’s perception of their child, or even their own perception of their child’s identity. Because the feeding tube is so often portrayed as a sterile medical device devoid of nurture and love, many parents have difficulty realizing that they are in fact feeding their children and helping them thrive, even with a feeding tube.
Negative Media Portrayals of Feeding Tubes
People in the community at large may also hold negative opinions of feeding tubes, typically due to limited experience and harmful media portrayals of tubes. Many people’s first introduction to feeding tubes was the Terri Schiavo case, the case of the woman with a brain injury whose husband wanted to remove her feeding tube, thereby causing her death. The average citizen extrapolated from this case that feeding tubes were “life-support” for people with severe disabilities who had no quality of life. The next major media mention of feeding tubes came from the K-E diet, a ridiculously extreme and medically dangerous method of rapid weight loss marketed toward brides and other individuals obsessed with their weight. With these as the only experiences most people have with feeding tubes, it is not surprising that the general community has such negative associations with tube feeding.
Tube “Dependency” and Demonization of the Feeding Tube
While much of the medical community treats feeding tubes without bias, at times doctors, therapists or surgeons may inadvertently demonize tubes by using loaded language that inherently links feeding tubes to failure or condemnation. There is much talk of “tube dependency” as a result of “failure to thrive” in the medical community. This terminology suggests that a child’s or parent’s failure has necessitated the feeding tube, that the tube itself was born from failure. Continued dependence on the tube, or tube dependency, furthers this concept of failure on the part of the child or parent. This terminology casts the feeding tube itself as a metonymic symbol of failure, disability and dependence.
The feeding tube is defined by what your child can’t do—she can’t eat, swallow, or digest—instead of the benefits it brings her. Many of the diagnostic codes associated with feeding tubes even have the prefix “dys” meaning not or negative. There is dysphagia or the inability to swallow, or dysmotility, a condition in which food doesn’t move through the digestive tract.
Some medical clinics around the country talk of “freeing” the child from the feeding tube, as if the tube itself is literally strangling the child. One tube-weaning program describes itself as helping children to overcome, “the severe condition of tube feeding,” suggesting that the feeding tube itself is a horrid affliction. Another states that, “Anything less than complete elimination of feeding tube dependence after completion of feeding therapy is considered to be a failure.”
These approaches are entirely based on the concept that the mere possession of a feeding tube is a failure. One program goes so far as to call itself “No Tube,” as if simply getting rid of the tube will miraculously fix your child. Just as removing my glasses doesn’t mean I can see, removing a feeding tube does not mean a child is suddenly cured of all of her medical or behavioral issues. By fixating on the tube as the source of the problem, these clinics perpetuate an association between the tube itself and negativity, instead of concentrating on helping the child to thrive. They also feed off of the desires of parents who have been unable to accept their child’s need for a feeding tube, promising to make the tube go away, thereby returning the child to “normal.”
Creating Positive Tube Imagery
The goal of all parents is to help shape their children into confident individuals with a positive identity. In these times, it is hard enough to achieve this goal for children who are completely average and have no differences or challenges. It can be exceptionally hard for children with differences, such as children with feeding tubes.
Awareness of attitudes and terminology is a critical component to helping a child develop a positive tube identity. Parents need to think about the messages they are sending to their children as they approach surgery, placement and weaning. They have the power to present the tube in a positive light, making the tube itself fun, and feedings loving and nurturing. Parents also send messages every time they work on feeding or weaning from the tube, and must be careful to always remember that the tube is merely an aid to health and life. Parents need to make sure that they always respond positively to the feeding tube to ensure their child does not develop any negative associations with the tube itself.
Awareness among medical professionals is also key. From the first discussion of placement of a feeding tube, medical professionals need to be cognizant of the messages they are sending to children and families. The feeding tube must be described as an aid or a device—nutritional support—that will help improve a child’s health and nutrition. It should not be termed a necessity due to failure.
Advocacy in the community as a whole is also desperately needed. If more people understood how feeding tubes are used, what types of children use them, and how they may assist these children to live life to the fullest, many of the negative attitudes and stereotypes toward feeding tubes may disappear.
If you are not sure where to start, here are some practical strategies to help a child develop a positive tube identity:
Get a Tubie Friend or Mini Buddy. These organizations make stuffed animals with feeding tubes that match your child’s tube. They can help your child have a friend who looks and eats just like she does. It is also possible to make your own stuffed animal or doll with a feeding tube. Your child will learn to love, feed and nurture this friend, thereby learning to love herself.
Make some tube feeding friends. Let your child—and you—meet other families who tube feed. They will have a blast comparing bellies and feeling completely normal. So will you. If you can’t find one in person, you can always find someone online through the Feeding Tube Awareness Foundation.
Read a children’s book about tube feeding. There are several books out there featuring children with feeding tubes. Author Rhiannon Merritt-Rubadue has a whole series, available at My Tubey. Another is available through MitoAction.
Consider a blended diet. Lovingly preparing real food for your child can help both of you. You retain the important role of feeding your child, while your child is likely to see improved health by eating a fabulous diet of real foods.
Make tube feedings mealtimes. If your child is on bolus feeds, try to schedule feeds so they are part of a loving family mealtime. Even if your child is on continuous or night feeds, create feeding rituals based on love, such as cuddling for an hour when feeds start, or sharing family mealtimes.
Embrace the tube. The tube is part of your child. Celebrate it! You may want to name it, buy lots of cute G-tube pads to enhance it, or tattoo around it with temporary tattoos. Make it fun! Allow your child to show it off while swimming or feeding if that is what he wants. Take pictures of your child without covering the tube. The more your child sees you treating the tube as something fun and positive, the more likely he will embrace the same philosophy.
Share the tube. Help to educate friends, family, medical professionals and the community about feeding tubes. A little education can go a long way. Join the effort at Feeding Tube Awareness Foundation.
Teach your child how to respond to adversity. While we try our very best to shield our children from negative people and comments, your child will inevitably be stared at, teased or asked questions about her feeding tube. Prepare responses in advance, and consider using the “cool” factor (I’m a robotically enhanced super hero from the future!), humor (If you unhook it, I will deflate like a balloon), or just plain amazement (I can eat while I sleep!).