Interviewed by Erika Goyer, Hand to Hold’s Family Support Navigator
Making the decision to tube feed is never an easy one. Tube feeding is frequently associated with gravely ill adults, not as a way to help children get the nutrition and hydration they need to be able to grow, thrive, and develop. And tube feeding can be a scary prospect for parents, but it doesn’t have to be. Thanks to moms Traci Nagy and Laura Wagner.
Never Underestimate the Power of Parents
Traci Nagy’s son, Lucas, received his first feeding tube in August 2008 at two months of age. She wasn’t satisfied with the resources available to new parents on tube feeding and the general lack of awareness among the general public of the benefit tube feeding can have to medically complex children like her son. In June 2010, Traci launched the “Let’s Get a Tube Fed Child on Sesame Street!” campaign on Facebook. In October 2010, she galvanized an effort to create Feeding Tube Awareness Week which resulted in creating the organization, website and Facebook support page.
Laura Wagner’s daughter, Harmony, has had a feeding tube since she was born in June 2009. Laura has been an advocate for creating awareness through her blog and her group on Babycenter.com, Special Needs and Medically Complex Kiddos. She pushed to make the Feeding Tube Awareness Foundation a non-profit organization.
A Movement is Born
Feeding Tube Awareness was founded in 2010 as a means of supporting parents of tube fed children and raising positive awareness of tube feeding as a life-saving medical intervention. Tens of thousands of infants and children are able to live, grow and thrive because of tube feeding. The organization is dedicated to providing parents and caregivers with practical information needed for day-to-day life with a tube-fed child. In addition, FTA strives to raise positive awareness of tube feeding as a life-saving medical intervention, so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care. Traci and Laura want tube feeding families to know that they are not alone, even though they can sometimes feel like they are.
I Love a Tubie
The group’s logo “I heart a tubie” sums it up nicely. It is a symbol of embracement and empowerment for families faced with a child whose medical conditions require tube feeding.
Feeding Tube Awareness Week is the second week in February each year!
The Mission of the Feeding Tube Awareness Foundation
- “Provide medical type information in language that sleep-deprived parents can understand. That’s why we also have how-to videos made by parents
- Make tube feeding feel less scary and overwhelming. I have seen parents go through great lengths (often at the expense of their child’s health) to avoid tube feeding. Children need enough calories and hydration to live, grow and thrive. If they are unable to do it on their own, a feeding tube can help make sure they are getting what they need during critical stages of development. Children and parents quickly adapt to tube feeding and it becomes second nature just like everything else.
- Change public perception of feeding tubes as being for the elderly at end-of-life. Public perceptions do not match the reality so many tube feeding families have. Tube fed children often don’t look sick. Children can reach their potential because they have the nutrition they need. Tube feeding can mean life is possible.
- Show parents they aren’t alone. It is pretty easy to feel alone when you have never heard of tube feeding a child or met anyone with experience. But, there are hundreds of thousands of children who are, or have recently been, tube-fed in US alone. There are more than 5,400 parents, caregivers and supporters on the FTA facebook page and growing.”
If You are Considering a Feeding Tube
If you are faced with the decision to tube feed, here are some questions to consider:
- Is my child safely able to eat and drink enough to grow and develop appropriately?
- Will my child be able to catch up on necessary weight gain on his own?
- Is my child using too much energy to eat and drink?
- Does my child have a medical condition that will make it more difficult for her to maintain a healthy weight?
Join the Cause
Feeding Tube Awareness’ facebook group offers real-time support and knowledge sharing among thousands of parents and supporters.
Hand to Hold especially loves the information page created to educate friends and family about feeding tubes and how they can support the families who use them!