Tube Feeding in the Public Tube Feeding in the Public Photo credits: Mary Heng (simplylambchops.blogspot.com)

Some people have difficulty walking. Some people have trouble seeing. Some people cannot hear. My daughter has difficulty eating by mouth - specifically, she cannot swallow. My little girl received her nutrition entirely via a device known as a feeding tube since birth. If not for this simple...

 ...tool, she would not have survived her early years and grown into the spritely, bright little girl she is today.

The feeding tube is to her how a wheelchair is to someone who cannot walk, and how the white cane is to someone who cannot see. However, while most people has found acceptance of the wheel chair, white cane or hearing device as medical interventions that help their users, the feeding tube has often been misunderstood, feared, and even condemned due to very poor societal awareness of what it is and its purpose.


What is a feeding tube?

In the simplest possible way to define it, a feeding tube is a medical grade, small, flexible tube that is inserted into the gastrointestinal route as an alternative way to supply nourishment and hydration to its user.

KEY NOTE: It is NOT a breathing tube even though some types of feeding tubes are inserted via the nose (nasal gastric path) and look like it has something to do with breathing.


Why is it used?

It is usually used when a person is unable to swallow orally either due to pain, post-surgery trauma, a neurological condition that impairs the swallowing function or other related reasons.
The Feeding Tube Awareness Foundation has identified over 300 conditions that can require someone to need nutritional support through tube feeding. Though not a complete list, this Condition List is extensive.

KEY NOTE: A child is tube fed not because his / her parent has poor parenting skills. A child is tube fed because of a medical condition necessitating it. The child may not look sick or incapacitated. Some children look perfectly well but they cannot eat orally due to an underlying medical condition.


How does it look like?

There are several types of feeding tubes:
* nasogastric (NG) ones (inserted via the nasal cavity to the stomach)
* naso-jejunal (NJ) ones (inserted via the nasal cavity to the jejunum or part of the small intestine)
* gastrostomy tubes (G-tubes) are placed surgically and require a surgeon  to make an incision to place the tube through the abdominal wall into the stomach.  Following that, subsequent g -tube changes can be administered by a trained caregiver as needed. G-tubes can be more comfortable than nasal tubes as they free up the nasal path for easier breathing and greater comfort for the user. Medical professionals are usually more in favour of this type of tubes as it facilitates better development of speech, minimises aversion issues in the facial area and does not add further burden to breathing. It is also neater and more socially appealing and is a safer option for longer-term tube feeding. There are two types of G-tubes: long flexible tube types known as PEG tubes and skin-level ones known as “buttons”
* Gastrojejunal (GJ-tubes) : These are surgically placed in the stomach just like G-tubes, but a thin, long tube is threaded into the jejunal (J) portion of the small intestine.


How Can I Learn More?

The Feeding Tube Awareness Foundation ® is a great resource site to learn all about tube feeding and the different types of feeding tubes.
They have two key publications which I highly recommend to read:


a) If you are a parent, read this “What You Need to Know Now - A Parent’s Introduction to Tube Feeding

 Parent Guide

 

b) If you are a member of public, THE friend or THE family member of a tube fed child, read this “What We Want You To Know - A Family & Friend Guide to Tube Feeding

Family and Friend Guide


What It Means to Us

Our family is indebted to this simple medical invention. In spite of an intense desire to heal my child completely of dysphagia (difficulty in swallowing) and our love-hate relationship with the need to tube feed her, I find it especially important to acknowledge the benefits of this alternative way to feed for a simple reason – It. Saves. Lives.

In Singapore, there is a lack of awareness of what feeding tubes are, what tube feeding means, the need for it and the positives of it. Due to this societal ignorance, people who feed this way are often met with unsolicited attention in public places even when this should be as normal a way of life as it should for someone who simply feeds differently. Some were even harassed and asked to feed their children in the most unseeming of places – public restrooms - just because some members of the public find it distressing to witness the whole tube feeding process. But, would you, as a human being, choose to eat in the toilet? Well, neither would our loved ones who happen to feed via the tube.

To help those who may feel distressed when they happen to witness someone being tube fed, this article is for you. More people should understand the positives of tube feeding and stop condemning those who need to feed this way because of their medical condition. Instead, learn how to support them.


How can you help?

1. Read the above two publications. It will enable you to be our advocate.

2. Help spread awareness and positivity about tube feeding

The 6th annual Feeding Tube Awareness Week® will be celebrated worldwide from February 7-13, 2016! Feeding Tube Awareness Week® was created by the Feeding Tube Awareness Foundation, a 501(c)(3) non-profit organization in the United States, to increase awareness of feeding tubes and enteral feeding and to promote the positives of tube feeding as a medical intervention.

Below are downloadable communication images and materials that are available for use in social media to help spread awareness.

 

 

For more information on its trademarks and usage guidelines, please visit http://www.feedingtubeawareness.org/Trademarks.html

3. Do not stare. You can smile and say Hi. But try not to ask too many questions. Instead, respect our privacy. We are just like you having a meal and like everyone else, we appreciate the space to enjoy our meal times, free from interrogation.

4. Don’t be afraid of our differences. We are not aliens. We do not tube feed to traumatize others in public. We do so because our child needs a drink or is hungry and just like anyone else in that situation, we offer food and drink, just in a different way.

5. If you are an educator, support our children who are in school who needs to be  tube fed. Please do not suggest that they have their meals in the school sick bay or toilets. It will only inculcate a mistaken sense of shame over a condition they have no fault of. Instead, think of ways to create positive awareness in school and inclusion of the child, a full acceptance of him or her, including his/her need to be tube fed.

You DO have a choice and the opportunity to make a positive difference in someone’s life. We will thank you for it.

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Video Spotlight

Credit: A video by Channel 5

Credit: A video by Trixie Chua & Celine Kim for Special Seeds Singapore.

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