Looking back, my son had feeding issues from the very beginning. But, he was two months old when our gastroenterologist said the words ‘feeding tube’ during our first clinic visit. He was admitted after the appointment and subsequently received an NG tube. The NG tube was a relief and the terrifying feeling all at the same time.
The relief came in that there was something we could do for him to get him the nutrition he needed. The fear came from all that was unknown. Tubes for feeding was something that I associated with the gravely ill or elderly. It filled me with an overwhelming worry of what was medically wrong with my newborn.
After the first year of tube feeding…
I was exhausted. In the first year my son went from NG tube to G tube, and GJ tube. Family and friends were as supportive as they could be, but no one in our lives had any personal experience with a medically complex child. There was no ready group of parents to welcome us and tell us it was going to get more comfortable. We found it very challenging to find information and tips on dealing with this condition and didn’t know what to ask our medical professionals.
I finally met a group of parents online who shared the same experience, after six months of feeding through a tube. Once we all met, we shared their knowledge, experience, emotional support, and the tips to manage life tube feeding a child at home. I felt that parents needed better access to information, and they needed to hear about the positive benefits of tube feeding. For my family, tube feeding meant my child would live, grow, and thrive. However, it was rare to hear anything positive about what tube feeding meant for families like mine. Once I understood tube feeding, it did get more comfortable. I felt the urge to help other parents like myself, and that drove me to found the Feeding Tube Awareness Foundation in October of 2010.
The mission of the FTAW
The mission of the Feeding Tube Awareness Foundation (FTAW) is to provide parents and caregiving with the practical information they need to raise a child who has a feeding tube. Our goal is to create the organization we would have wanted to find when we first learned our children needed a feeding tube. We built resources based on the needs we saw (and continue to find) in our own lives. Our educational materials are built on the best practices of experienced parents and written in simple to understand language. We know how it feels to be overwhelmed, and the importance of connecting with other parents.
And the foundation is born is 2011
In 2011, we launched Feeding Tube Awareness Week® to raise positive awareness. The goal is to educate the public about the hundreds of medical reasons for needing a tube. During the week, we encourage parents to share their stories and experiences through social and traditional media.
Previous awareness weeks have reached millions of people through television, print and online newspapers, and social media.
Many companies, such as Nutricia, have also committed to the cause of raising positive awareness. There more resources available today for parents going through this experience, so these don’t feel so alone. They may even read about it their local newspaper.
My son is now 8.5 years old. He is a thriving third grader with special needs and G-tube. It wasn’t easy.
– Traci NagyToday’s blog post comes from Traci Nagy. Traci Nagy is the Founder of FTAW, a 501(c)(3) non-profit organization (www.feedingtubeawareness.org). The organization’s Facebook page has more than 45,000 followers and acts as a Q&A forum and place for information sharing. (https://www.facebook.com/FeedingTubeAwareness). She is a mom to Lucas, who has Koolen-de Vries Syndrome.