Group aims to clear up misconceptions about children’s feeding tubes

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SALT LAKE CITY -- Thousands of mothers and fathers are forced to use feeding tubes on their children so they can get the nutrition they need. But those feeding tubes come with a bogus negative connotation, and that is why there is a huge push for Feeding Tube Awareness Week: February 7th-13th, 2016.

“This is incredible what's happening right now,” said speech pathologist at Primary Children’s Rehab in Taylorsville. “Because I haven't seen this this much so I am super stoked.”

Nineteen-month old Nyla Jane Richards was swallowing some real food for the first time with her mom, Danna Richards, and her speech language pathologist, Helene Taylor.

“So here we are feeding a 19-month-old hummus and she loves it’” said Taylor.

Nyla Jane was born unable to swallow food or liquid, and the answer was feeding tubes. It initially scared Danna, but that quickly changed.

“A feeding tube was inserted past her stomach, deep into her intestines to where she couldn't even vomit the milk because she just didn't know how to handle the liquid in her airway,” Richards said. “That feeding tube saved her life.”

Richards and Taylor are part of a group called Feeding Tube Awareness Foundation.

Richards meets people every day who sadly, do not understand her daughter’s condition.

“She already understands her body isn't normal,” said Richards as she described the struggle she faces every day. “And when somebody asks, ‘What's wrong with her?’ The message she hears is 'Something is wrong with me?'”

She sees people who don’t understand feeding tubes, blaming parents for failing to teach their infants how to eat, which makes it even more of a struggle. However, Richards is more than happy to answer questions and help educate anyone who shows an interest.

“The misconception, ‘Oh, the mom didn't try hard enough,’ or ‘The dad didn't try hard enough,’ and that is the most awful misconception,” said Taylor. “These parents are trying with everything in their being. And using every tool that they have and their kids are still not eating.”

That’s when Taylor steps in to help. She is there to find ways of encouraging Nyla Jane to try food.

“She is not yet able to eat orally; she is getting there,” said Taylor.

Helene says with more therapy and training, Nyla Jane could soon be eating real food full-time. Richards hopes people will one day see her daughter as overcoming a challenge, instead of suffering from one.

For more information to understand feeding tubes, click on the links below:

http://www.feedingtubeawareness.org/mission-purpose/
https://www.facebook.com/FeedingTubeAwareness

1 Comment

  • bob

    My son has a feeding tube. I was not aware that this was a “stigma.”

    Must we have an advocacy group for EVERYTHING? Seriously.

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