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Sunday, February 5, 2012

Feeding Tube Awareness Week: Day 1

This week is the 2nd annual Feeding Tube Awareness Week. The purpose of this event is to promote greater understanding of tube feeding, from the underlying causes to the day-to-day life of someone with a feeding tube. Over the next few days, I will be doing daily blog posts following the topics on the Feeding Tube Awareness Foundation's website.

Today's topic is:
Why awareness is important to my family? What would be the difference for me/my child if tube feeding was better understood?

For the most part, I really didn't (and don't) mind when people would ask questions about Raya's feeding tube. Before I had a child with a feeding tube, I really didn't know much about them either. I had heard of words like "nasogastric" and "gastrostomy" and we had one friend whose son had an NG tube, but that was all I knew. When Raya got her feeding tube, our family and close friends were as supportive as we could have hoped for. Even though they may not have understood the whole situation, they knew that if she had a feeding tube, there must have been a good reason for it.

The point where I realized that there is a need for greater awareness and understanding of tube feeding was when acquaintances and strangers (and even a few good friends) tried to offer advice and questioned the course of action we were taking with Raya. We heard things like: "When my baby had reflux we switched to soy formula and that fixed the problem." "Are you sure you're burping her enough?" "You should try giving her apple cider vinegar every day for her reflux." and "Does she really need that just because of reflux?" Sometimes it felt like people assumed that by going with a feeding tube, we were giving up and taking the easy way out. Even worse was the feeling that people thought Raya's need for a tube equated to our failure as her parents. I know it's not supposed to matter what other people think, but when it comes to people looking at you like your child's medical condition is somehow your fault, it hurts no matter how hard you try to ignore it. This "tubie life" has been anything BUT the easy way out. For us, awareness means that when people see someone with a feeding tube, they understand that feeding tubes are a life-saving medical intervention.
When Raya was 4 months old, she got a helmet to correct her congenital plagiocephaly (misshapen head). She also had an NG tube then, and even though our other 3 kids were young, THEY were even aware of the way people stared at Raya. Little kids would point at her and ask their parents, "What's wrong with that baby?" in a tone louder than the parents were comfortable with. Instead of answering their questions or asking me to answer their questions, they got embarrassed and usually tried to shush their kids and get away from us as quickly as possible. I understood why they reacted the way they did, but with that understanding came the realization that someday in the not-so-far-off future, Raya would be old enough to understand that people were reacting to HER with fear, shame, and sometimes even disgust. THAT made me sad. No parent wants their child to go through life feeling like they are different from everyone else or be ashamed of who they are.

There are hundreds of reasons why a person may need to be tube fed. One thing that makes tube feeding harder for people to accept or understand when they see it is that often, tube fed children look completely healthy. People don't realize that even though a child can look perfectly normal on the outside, there could be any number of things wrong on the inside that make it unsafe or impossible for them to eat. Going through life without eating ANYTHING is a difficult concept to grasp for those of us who don't know what that's like. The other thing that we have run into is that people will see Raya taking bites out of a chip or french fry and ask us, "If she's eating now, then why does she still have a feeding tube?" What they don't notice is that she may be biting and chewing, but she's not swallowing. :) Not only that, but a lot of kids who take nibbles of a few different foods still don't have the skills, ability, and/or desire to eat enough food or drink enough liquid to sustain their lives. Having a feeding tube doesn't mean that there is anything "wrong" with a child, it just means he or she needs help. Some people need glasses to help them see, some need wheelchairs to help them get around, some need hearing aids to help them hear, and some people need feeding tubes to help them eat.

In honor of FTA Week, the founder of the Feeding Tube Awareness Foundation compiled pictures of 222 "tubie" families and put them in a video. We pop up around 36 seconds. :) Here it is:

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