Feeding Tube Awareness Week

I shared on Facebook that because February is dedicated as the month to raise awareness regarding many of Aberdeen's struggles, I would attempt to highlight each of these issues as the month progresses. Think of it as Aberdeen Awareness Month!

We kick off Aberdeen Awareness Month with Feeding Tube Awareness Week (February 8-14). 

Did you know that approximately half a million people nationwide rely on feeding tubes to receive adequate nutrition? It is estimated that 20% of these people are children. There are over 300 known conditions that contribute to the need for tube feeding, and that number is growing. 

I, for one, had absolutely zero knowledge about tube feeding before Abby was born. I assumed that eating by mouth was always instinctual, and did not understand that when the body has to spend extra effort in keeping the heart beating, or lungs working, that feeding gets put on the back burner. It isn't a matter of not being hungry enough, eating by mouth requires so much effort and coordination, that some people actually cannot do it. Others have the capability of eating by mouth, but because of aspiration or other issues, it is not safe for them to do so.  Until we were sent home with a feeding tube and pump system, I was in complete denial about the prospect of Abby not eating by mouth. But, here we are, with Abby about to turn six months old, and still totally reliant upon the feeding tube. 

Though it has prompted lots of tears and frustration, I am so thankful for Aberdeen's feeding tube. It has kept her alive. Forgetting all of her other challenges, in another time or place, Abby's feeding issues alone could have killed her. In addition to receiving 100% of her food via tube, Abby also receives all of her medications through her feeding tube. I cannot imagine having to orally administer as many meds as Abby has per day - so even if she grows out of her need for the tube nutritionally, she may need to keep it just to make sure that she is effectively receiving her life-saving medications daily.  It may be unusual, but it works. 

Abby with her former NG tube

Abby with her current PEG tube

There are many different types of tubes used for many different reasons. Abby had an NG (naso-gastric) tube from birth through 3.5 months of age, and has had a PEG (percutaneous endoscopic gastrostomy) tube since then. In March, GI will place a different version of the G-tube (gastrostomy), so that when Abby is on a break from her feeds, there won't be any external tubing attached to her.  These tubes can also be pushed out of the stomach and down into the duodenum and jejunum (intestines) for patients who cannot safely handle having food in their stomachs. When this is done they are called ND or NJ tubes, or GJ or J tubes.

I encourage you to explore the following site and learn more about this alternate form of eating. Share your knowledge. To me, awareness isn't just about raising money for research (though that is very important as well), it's about differences becoming commonplace instead of oddities, it's about preparing a family for the unforeseen challenges of a medically complicated child, it's about better understanding the people around us.

Feeding Tube Awareness Foundation

Please feel free to ask me any questions that you may have!