Traci Nagy Fights For Feeding Tube Awareness

There is no such thing as a small cause on Causes.com. Whenever we see a call to action from a passionate organizer, it’s hard to contain our excitement.

Meet Traci Nagy. She didn’t really know what to do when she found out her son, Lucas, had a chromosome abnormality. When he was 20-months-old, Lucas was diagnosed with a form of stomach paralysis that kept him from properly digesting food. Now 4-years-old, the only way to keep Lucas alive is to administer a feeding tube until his muscles develop, which could take many years. “I knew nothing about feeding tubes prior to him needing one. I had done general searches and found really technical information. I didn’t really have a lot of resources, but I was lucky to have good doctors. However, there is only so much that a doctor can tell you about life with a child who is being tube fed for 24 hours a day.”

Traci knew there were other parents like her, so she had an idea: provide parents and families with clear and practical language to manage their children’s needs. “You have to figure out things like sleeping with a feeding tube. My child learned to walk, climb, run, everything while being tube fed. I wanted to share these stories.” In 2010, Traci founded a feeding tube awareness foundation to sponsor an awareness week about tube feeding; Traci believed that creating an organization would propel parents to share their stories, tips, and advice. That same year, Traci started a cause community on Causes.com to inspire Sesame Street to feature a feeding tube child. Thousands of members joined her cause and she gained momentum.

Then last month, the New York Times published a story about a Florida physician providing feeding tubes to women trying to lose weight before their weddings. It gained considerable press, but Traci was at a loss for words. “It felt like a slap in the face to see someone use [feeding tubes] so frivolously. I think a lot of people were questioning the ethics.” Traci, empowered by her previous organizing experience, created a petition on Causes directed at the doctor — Dr. Oliver DiPietro —  to stop the practice of tube feeding for weight loss. “What hurt me most is that we try to get our children to gain weight, and these doctor’s are using tubes for people to lose weight.” Hundreds of people rallied behind her and, eventually, the petition was linked in a CNN article about tube feeding and young adults.

Traci’s action inspired people to question the ethics involved in dietary tube feeding, and her community grew even more. “The biggest thing that we hear is ‘I’m so glad I found you.’ The biggest success is actually being able to find a community of people that know exactly what you are going through and being able to have people who you can ask questions to from a moments notice.”

What’s next for Traci? “Our goal is to raise awareness, so we will be back at Causes.com for sure. We hope that our next actions can be positive. I still would love to see a tube-fed child on Sesame Street.”