In August 2008, Traci Nagy heard her 8-week-old son’s doctor utter two words that simultaneously struck fear and relief into her heart: feeding tube. Prior to that day, her only point of reference for feeding tubes was tragic end-of-life stories that hit the mainstream media. Now she found herself being thrown into the world of tube feeding, which she quickly learned did not necessarily equate with the end of life. With nowhere to turn for moral support as she navigated through months of testing, hospital stays, and daily life with a child who had a feeding tube, Traci yearned for a way to connect with others who could relate to what she was going through.
The journey was lonely, but was made more difficult by labels like “failure to thrive,” well-intentioned but misguided advice from friends and family, and the strangers who stared at what was obviously a medical device taped to her infant son’s cheek.
In the midst of all the negativity she felt coming from those around her, she saw what tube feeding was truly about. It was literally saving her son’s life. Not only did it keep him alive, but it allowed him to grow, develop and thrive. This new understanding of what tube feeding could do for a child who struggled to eat ignited a new passion in Traci, and a desire to show the world that the general perception of feeding tubes was wrong.
In an effort to try and share the positive side of tube feeding with the world, Traci first started an online campaign to get a tube fed child on Sesame Street. Although that effort did not produce the desired result, it didn’t deter her from pushing forward in her efforts to rebrand the feeding tube as a life-saving medical device and increase awareness in order to change public perception. In October 2010, Traci came up with the idea to hold a Feeding Tube Awareness Week. She posted her idea on the My MIC-KEY facebook page and they liked it. With that, the Feeding Tube Awareness Foundation started to take shape.
Traci got to work building an organization that could support Feeding Tube Awareness Week. She built a website and started a Facebook page. Many parents from the Babycenter group, Babies and Children with a Feeding Tube, lent their stories, tips and expertise. Making the website a comprehensive storehouse for all things pediatric tube feeding was successful only because of the collective willingness of experienced parents to share their knowledge.
A board of directors was established and a volunteer staff comprised of other parents of children with feeding tubes began supporting Traci in carrying out the Foundation’s mission. Parents began flocking to the Facebook page in droves, thrilled to find support in the form of other parents who understood what life with a feeding tube was like.
In 2011, the first official Feeding Tube Awareness Week was held, and the “I heart a Tubie” and “Super Tubie” merchandise was launched. Since then, the expansion of the Feeding Tube Awareness Foundation has been moving steadily forward with the mission to provide practical information on the day-to-day life with a feeding tube, and to raise positive awareness of tube feeding so that ALL who rely on feeding tubes can get the support they need. The website is continually expanding to include any and all information that parents of children with feeding tubes need.
The Feeding Tube Awareness Facebook page is the largest online support group for pediatric tube feeding in the world with more than 50,000 “fans” and counting. Volunteer staff members dedicate countless hours each week to answering every question asked on the Facebook page, constantly striving to improve the quality and quantity of information provided on the website, and building relationships with providers of services that are vital to those with feeding tubes. All of this is done while balancing careers, families, educational pursuits, and caring for their own medically complex children.
As a parent-to-parent organization, the FTA staff truly understands what life is like with medically complex children and as such, understands the value of public awareness of tube feeding. Greater awareness means that parents find the support they need more quickly and feel less alone and scared. It means that family, friends and strangers have more compassion and understanding. It changes public opinion and by doing so, it changes the experience of tube feeding. Awareness matters in very real and tangible ways.