This year, February 6-10, 2017 will be the 7th annual Feeding Tube Awareness Week.
This event was started by a mom just like you. She wanted to help her son feel just like all of the other kids—and she set out to make this happen.
Now, 7 years later, this event has taken on a life of its own. People all around the globe share stories of how a feeding tube has helped, improved, and in some cases, saved their child’s life.
During this week, people can read all about the different types of feeding tubes, feeding methods, some of the most common reasons people need feeding tubes, and some of the complications and challenges that come with feeding tubes. Families share photos and tips all week long to help reduce some of the stigma attached to feeding tubes.
My daughter, Casey, was unable to suck or swallow and required a feeding tube to get her nutrition and medications. She started out with an NG tube (a tube that ran from her nose into her stomach) and then, at 1 month old, had surgery to put a g-tube in place (a tube with direct access to her stomach from her belly).
When we first knew she needed this tube, the idea scared me. I was new to this medical world and all I knew about feeding tubes was what I had heard on the news and TV.
There was a famous court case many years ago over a woman named Terri Schiavo. Her husband wanted to remove her feeding tube and her parents did not. The feeding tube was described in the news as a form of life support. People were led to think that removing it would lead to her immediate death. This was all I had ever heard about feeding tubes so, of course, when I was told that my daughter needed one I thought it was a huge deal.
I look back on that day now and realize the feeding tube was not something to be scared of, in fact, the feeding tube was a good thing. Once we had a way to feed our daughter, we were able to take her home from the hospital. She was able to grow and the feeding tube became part of her.
Many people today have feeding tubes and they live very full lives. The feeding tubes and pumps are designed to be mobile. It does take a little getting used to, but it in no way does it prevent a person from living their life. In fact, it makes life much more possible.
There are lots of accessories like fun printed backpacks to carry the feeding pumps, and decorative pads that can be worn between the tube and your skin. There are decorative tapes that can be used for NG tubes as well. There are lots of ways that feeding tubes can be an extension of your child’s personality.
I wish I had known more about feeding tubes before my daughter needed one. If I knew then what I know now, it would have been a much less scary experience. I think Feeding Tube Awareness Week does a great job to help teach people how much feeding tubes can help.
Thanks, Feeding Tube Awareness Foundation, for helping to show the world that feeding tubes are not life-limiting, but rather, life-enhancing.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.