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Traci Nagy and Feeding Tube Awareness

It might be hard to believe, given the subject matter, but today we had a rocking good conversation with Traci Nagy, the founder of Feeding Tube Awareness Foundation. We all agreed that never had we dreamed of such a discussion, but neither had we dreamed that we would be caregivers of children with complex medical needs and connected to one another in such interesting and enduring ways.

Traci created the non-profit in 2010 to educate the public and change perceptions of tube feeding. Her son Lucas was only thirteen days old when Traci just knew something was wrong after experiencing the baby's near-constant projectile vomiting. She couldn't convince her first pediatrician that it was more than just the usual baby spit-up, though, so it was actually weeks before the baby was finally seen by a gastroenterologist. When Lucas was two months old, the family heard what to them at the time was very scary news that Lucas would need a feeding tube. He would be diagnosed at twenty months with a micro-deletion on the 17th chromosome, or Koolen de-Vries Syndrome.

The first two years of her son's life were obviously traumatic ones, filled with uncertainty and very little information, but Traci was motivated to ensure that parents didn't go through what she did. She wanted them to have the information and resources they needed early on, and she wanted to educate the people who surround the parents and caregivers -- family, friends, co-workers and even people on the street -- about why a child might need a feeding tube. "I wanted to raise awareness of pediatric tube feeding so that parents would get better support from those around them," Traci stated.

On her journey she marveled that it was the fact that her son couldn't eat that was most misunderstood and the hardest for people to accept -- even harder than the consequent developmental delays related to his genetic condition. "It is very hard for people to think of an infant or child not being able to eat," Traci stated. A parent and caregiver's most basic instinct is to nourish and feed their baby or child, so the feelings of inadequacy can be crippling. "Everything in our culture is about food," Traci says.

"At the time I started Feeding Tube Awareness Foundation, there wasn't anything that was dedicated to pediatric tube feeding." The group was the first real presence on social media. Traci's intent was to get a positive message about tube-feeding "out there" -- and to educate people about why kids are tube-fed.

"What it means, really, is just another way to eat!" Traci emphasizes. "And it doesn't have to be scary."

When parents first hear that their child needs a feeding tube and start googling, they will find on our site something positive as well as information they can rely on and other parents with whom they can connect. "Obviously, this is not the path you want to go down," Traci acknowledges, "but if you have to do it, there are ways to make it easier for you." Traci added that the site is also helpful for family and friends.

The Facebook page of Feeding Tube Awareness Foundation has over 54,000 members now and has literally changed the dialogue on tube feeding to focus on the positive benefits of getting nutritional support. Jason and Elizabeth discussed with Traci not only her motivations and the consequent success of her non-profit foundation but also HOW she did it, even as she was learning how to cope with the challenges of a medically complex baby. You will be inspired and informed, again, as you listen to Traci's journey and learn where her organization is going and what impact it has made, not just on the community of caregivers but also on the medical community and industry.

Traci is the 2013 winner of the Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society of Parenteral and Enteral Nutrition. She is a member of A.S.P.E.N and has contributed to their Pediatric Section Newsletter and blog. She holds a Masters in Political Science, with a specialization in Political Psychology. She routinely speaks to industry and clinical audiences about pediatric tube feeding.

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It's Okay to Be Different by Todd Parr

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Susan Agrawal, editor of Complex Child Magazine

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