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Tuesday, February 10, 2015

Tube Feeding: Debunking the Myths

Today's Feeding Tube Awareness Week topic is:
Today, we focus on correcting the myths about tube feeding. It is an opportunity to share the "truth about tube feeding." Tell us what you wish people understood about tube feeding. Share on your social media pages and blogs about what people need to know, and then please link your blog in the comments to this post. 

 There is a lot of misinformation floating around about tube feeding. When I hear some of the things that have been said to other parents, I feel really lucky. Most of the things that I've heard that have hurt my feelings or made me sad have been more the result of someone saying something or asking something out of not being aware or understanding tube feeding, and it hurt because of the place I was at mentally and emotionally at the time and not so much because of anyone deliberately trying to hurt my feelings or be cruel.

Here are some of the common misconceptions about tube feeding:
  • Feeding tubes are an end-of-life thing.
    • Truth: Feeding tubes can be an end-of-life thing, but for many like Raya, they are a beginning of life thing, meaning that when they start getting adequate nutrition & hydration through the tube, they can actually start living rather than just struggling to stay alive.
  • Feeding tubes restrict activity
    • Truth: If you have seen anything on my blog at all, you'll know that an active lifestyle is very much a possibility with tube feeding! While it can be true that tube feeding requires some accommodations, there are ways to work around feeding schedules and protect the tube itself so that there are very few physical limitations due to tube feeding. It also depends on the individual's needs. When Raya was on 20 hour a day NG tube feeds, it was difficult to do things like take her swimming because we couldn't disconnect her from the pump while we swam so we had to stay near the side of the pool, and if the tape got wet, it would come off and her NG tube would come out. (it happened.) It didn't mean we couldn't take her swimming, it just meant that we had to work around her tube and pump.
      At the moment, there is only 1 activity that I don't let her do with her pump on, and that is jump on the trampoline. Those pump bags are plastic, and plastic has more limitations than my daughter does.
  • Feeding tubes reduce the ability to learn
    • Truth: This could not be further from the truth. I find it hard to understand how anyone could really believe this to be true, but it came straight from a publication by a company that shall remain nameless. When tube feeding is done right, meaning that when parents and doctors work together to find a source of nutrition, feeding method, and feeding schedule that results in well-tolerated tube feeds and healthy weight gain, the exact opposite is true. A comfortable and well-nourished child has a better shot at learning than a child who is malnourished. There is just so much more to the equation than this overly simplified and completely false statement suggests. When a child can't get enough nutrition orally to thrive, being able to fill those nutritional needs through tube feeding INCREASES his or her ability to learn by fostering healthy brain development, as well as overall health of the child.
  •  Feeding tubes mean no eating by mouth
    • Truth: The feeding tube in and of itself does not prevent a person from being able to eat by mouth. The condition that makes tube feeding necessary is what may prevent a person from being able to eat by mouth. Some people with feeding tubes can't eat or drink anything by mouth, and some people can eat and drink the majority of their dietary needs by mouth. There are over 300 medical conditions that can make tube feeding a necessary part of life. Tube feeding is not all or nothing. Some people with feeding tubes can't eat, and some people with feeding tubes can eat. Of those who can eat, some can eat a lot and some can eat a little.
  • Feeding tubes prevent children from living normal lives
    • Truth: In a certain way, this is true. "Normal" for most people does not include feeding tube supplies. It doesn't include frequent doctor visits, monthly supply deliveries, or hours on the phone with insurance companies. However, "normal" does not equate to "good". The same publication I mentioned earlier from the company that shall remain nameless claims that children with feeding tubes cannot possibly live good, happy lives, and that tube feeding equates to misery. I don't believe that for one second. There may be some aspects of Raya's life that fall outside of society's definition of normal, but she leads a full and happy life. She goes to school, plays with her friends, participates in snack time (even if she's not actually eating), helps with chores around the house, participates in family mealtimes, and does not see herself as any less than normal.
  • Feeding tubes are permanent
    • Truth: Not all individuals with feeding tubes will have them indefinitely. Many only need tube feeding on a temporary basis of a few weeks, months, or years. Some will need them for life, due to whatever conditions made it necessary to tube feed.
  • Children should be weaned off of feeding tubes as quickly as possible
    • Truth: Children deserve to have a safe and positive relationship with food. Pushing too hard, too fast and/or without fully investigating the root of the child's feeding difficulties does not foster that safe and positive relationship with food. Some children need time to develop the strength and coordination that it takes to safely chew and swallow food and drink liquids without aspirating. Others need time to overcome sensory issues, food aversions, and oral aversions at a pace they are comfortable with. Some will always need the tube for a portion or all of their nutrition and hydration, and as such, should be allowed the quality of life of being able to explore food at their own pace. There are people and organizations out there who try to make parents feel like they are failing their children if they allow them to be tube fed, and that if they don't rush to wean them from the tube as quickly as possible, they are damaging their child. It is completely unfair to put that kind of pressure on parents, and just plain wrong to try to force tube weaning on a child who is not ready to be taken off of tube feeds.
  • Feeding tubes are scary/bad/negative
    • Truth: When you take the time to learn about tube feeding and understand the reasons why your loved one needs a feeding tube, you will understand the positive side of tube feeding. Without a feeding tube, your loved one would not be who they are today, and may not even be here with you today. If you are uncomfortable with your loved one's feeding tube, ask questions, but do it in a kind, non-judgmental way. Familiarize yourself with the feeding tube and associated supplies. You may never love the feeding tube, and you may never be happy with the fact that your loved one needs a feeding tube, but you owe it to him or her to become comfortable around it. It is a part of who they are, and it keeps them nourished. 
Tube feeding isn't always pretty. Sometimes it's downright gross. I can't tell you the number of times that I've had to wash my hands this week to get the stomach smell off of them after one incident or another. There are a lot of unpleasant things about tube feeding, but in our case, the alternative is starvation and/or extreme malnutrition and severe dehydration, so I'll take the tube over the latter. Tube feeding saves lives, and my life has been immeasurably enriched by the lives of the people I have met because of tube feeding. The truth is, tube feeding is a beautiful thing.

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