Looking back, my son had feeding issues from the very beginning. But, he was 2 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 most 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. Tube 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.
I was exhausted. In the first year of tube feeding, my son went from NG tube, to G tube and to 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 easier. We found it very challenging to find information and tips on dealing with tube feeding and didn’t know what to ask our medical professionals.
After tube feeding for six month, I was finally able to meet a group of parents online who 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 easier. I felt the urge to help other parents like myself and that drove me to founding the Feeding Tube Awareness Foundation in October of 2010.
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 found (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 understand how it feels to be overwhelmed, exhausted, scared and how valuable it is to be able to connect with other parents.
In 2011, we launched Feeding Tube Awareness Week® to raise positive awareness of tube feeding as a lifesaving medical intervention. The goal of the week is to educate family, friends, and the general public about the hundreds of medical conditions that can require tube feeding. During the week, we encourage parents to share their stories and experiences through social and traditional media. This year, Feeding Tube Awareness week is February 6-10, 2017. The theme of the week is “Fueling Life.” You can find out more about the week and how to participate at the FTAW website.
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. Today, when a parent learns their child needs a feeding tube, there are more resources available and parents do not have to feel 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. He most certainly wouldn’t be alive had he not been able to be tube fed practically since birth. It wasn’t easy. But, it would have been much easier if I had the right resources or knew anything about tube feeding before that first day in the clinic.
~ Traci Nagy
Today’s blog post comes from Traci Nagy. Traci Nagy is the Founder of Feeding Tube Awareness Foundation, 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 mom to Lucas, who has Koolen-de Vries Syndrome.