Raising Awareness of Tube Feeding and Rare Conditions

February 5, 2013

When I first heard the words feeding tube come out of our GIs mouth, my first feeling was a bit of panic. My only associations with tube feeding were Terry Schiavo and end of life. My son was two months old, and we did not have a full picture of what was going on medically, but we knew he wouldn’t be able to eat enough to live, let alone grow or thrive.

It is difficult to have people stare at your baby for negative reasons. The NG tube was often mistaken for oxygen. Brazen strangers asked what was “wrong” with him or even suggested that he would be better off at the hospital. “Helpful” relatives suggested that we needed second opinions. It wasn’t the full support we needed, particularly with being sleep deprived and emotionally drained.

It took 20 months and dozens of tests to get to the diagnosis of 17q21.31 microdeletion syndrome, recently named Koolen de Vries Syndrome. After diagnosis, I had time to reflect on our journey. The piece that was misunderstood the most was tube feeding, not the missed milestones. Food is different. It is social, it is a reward, it is nurturing, and it is the first bond you have with your child. It is baffling to think a child won’t or can’t eat.

What so many people don’t understand is just how many medical conditions and diseases can lead children to need nutritional support from tube feeding. Moreover, it can be pretty hard to get to a diagnosis with a child who isn’t able to communicate what they are experiencing. Many conditions aren’t visible or easily detected just by looking at a child.

In October 2010, I had an idea to hold an annual Feeding Tube Awareness Week to be held the second week of February, near Valentine’s Day. My goals for the week were to showcase the positive benefits of tube feeding. My son was alive, growing, developing and thriving because he was getting the nutrition and hydration he needed. It was a stark contrast to both the societal picture of tube feeding at the end of life. Moreover, I wanted people to understand the medical conditions that can lead to tube feeding. Without awareness of those conditions, many of which are rare, there would be less acceptance and understanding of the need for nutritional support through tube feeding.

In order to support Feeding Tube Awareness Week, the Feeding Tube Awareness Foundation was born. We have a dual mission of proving parents the pragmatic information they need to raise a child with a feeding tube and raising positive awareness of tube feeding so that families get the acceptance and support they need.

The Feeding Tube Awareness Foundation has identified more than 200 conditions and diseases that can lead to tube feeding in infants and children. We are certain that our list is incomplete and is a work in progress.

During Feeding Tube Awareness Week, we encourage tube feeding families to share their experiences and story through social media, blogs, and traditional media. Central to the tube feeding story is the condition that made it necessary. Through our awareness efforts, we have reached millions. But, there is so much more to do.

Traci Nagy is the Founder of Feeding Tube Awareness Foundation, a 501(c)(3) non-profit organization. The organization’s facebook page is the largest online support group for tube feeding in the world. Traci is the 2013 recipient of the Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society of Parenteral and Enteral Nutrition. Feeding Tube Awareness Week will be held February 10 – 16, 2013.

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