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FTAW 2016- Development: The Power of Tube Feeding



Today's topic:
Development: The Power of Tube Feeding
What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding?



Development is not the first thing that comes to mind when the topic of tube feeding is discussed. The first thing that comes to mind is survival. Ironically, it is the act of living in survival mode that inhibits developmental progress for many children. I remember sitting in a class in high school and listening to the teacher lecture about Maslow's Hierarchy of Needs. It looks something like this:

I can still remember the teacher talking about the most basic, primal human needs. The bottom of the pyramid contained physiological needs like food, water, sleep, breathing, and shelter. She explained that once those needs are met, the individual moves up to the next tier of the hierarchy to the safety and security needs, such as employment, financial stability, health, and property. As the needs in each tier are fulfilled, the individual continues to move up to the higher-order needs. If the most basic needs are not being met, it is impossible for the individual to work on higher-order needs. How does this translate over to a tube fed infant? Development. 

When a child is facing a medical crisis (or multiple medical crises), the focus MUST be on survival. At that point, keeping the child alive is the priority, and often that comes at the cost of other higher-order needs or skills. There are many children who are tube fed, not because of a feeding disorder or a problem with their digestive system, but out of necessity due to other medical problems. For example, children with congenital heart defects are often given feeding tubes, either temporarily or longer term, because eating consumes too many calories, they lack the strength & energy to eat enough to grow, they have a higher caloric need than they are able to take in orally, or they need additional calories to help them reach the weight they have to reach to have open heart surgery. Kids who are intubated tend to develop oral aversions that hinder their ability or desire to eat by mouth. Obviously, all of these interventions are critical to their survival, but often come at the cost of being able to eat and drink orally enough to sustain their own lives.

Looking back at Raya's experience as an infant, I can see where we had to sacrifice certain developmental needs for the greater good of keeping her body nourished. It wasn't as drastic for us as it is for many of our cardiac friends, but we still had to sacrifice certain things in the name of survival. I think the most obvious example is that when it was decided that she was at risk of primary and secondary aspiration, her GI doctor and I agreed that it was in her best interest to stop oral feeds completely until she had a swallow study done. Allowing her to continue drinking formula by mouth when we suspected that she was not swallowing safely could have resulted in life-threatening aspiration, so the decision was made for her safety, but with that decision came the cost of oral motor skills and the natural progression of feeding skill development. At the age that most infants are starting to eat solid foods, we stopped feeding her by mouth completely. That meant that not only was she not maintaining the skills of sucking and swallowing that she already had (as lacking as they may have been) but she was also not continuing on with the next set of skills that come with learning to eat solid food from a spoon. Survival in the form of preventing dangerous aspiration was necessary, but halted that development.

Somewhere around 14-16 months, Raya inched her way out of survival mode. The switch from a G tube to a GJ tube allowed her to keep enough calories and nutrition in to actually start growing and absorbing the fats and nutrients that she was struggling to absorb with the NG and G tubes. As the vomiting slowed and then stopped, she blossomed right before our eyes. It was an amazing transformation.



The difference was that tube feeding had allowed us to optimize her health, and that allowed her to move out of survival mode and start working her way up the hierarchy. When we were constantly having to put out fires with her medical needs, we did not have the luxury of focusing much of our time and energy into working on her developmental delays. Those things just had to fall to the bottom of the priority list while we tried to keep her medically stable. Once her body was no longer in a constant state of stress, she was able to start working on those areas of development where she was struggling. All of that was made possible because of tube feeding.

Now that she is older, the feeding tube still supports her development through nutrition, but there is one other important way that it supports her. The feeding tube takes the pressure off of her. I have come to the painful realization that my daughter does not have a normal relationship with food. I mean yeah, that's obvious, but in a very real, psychological way, she does not have the bond with food that typically developing children have. Eating requires not only a great deal of physical effort, but also a great deal of mental and emotional energy for her. When the demands that eating places on her are just too much for her, being able to rely on the tube to get her by relieves the pressure that she is under. Now that she's in kindergarten, there are a lot of demands on her limited attention span. The tube is allowing her to have a balance in still working toward being an oral eater, and falling back on the tube for support so that she can focus on what she's learning.

I know I've shared this video a lot, but I think it really illustrates what my ramblings are getting at. We started with a baby who was to busy trying to just survive, to ever attempt to overcome some of the developmental struggles she was facing. Heck, we didn't even RECOGNIZE a lot of what she was struggling with because we were so busy trying to keep her from puking her little guts out! Anyway, here's the video that still makes me cry every time I watch it.






This week is also Congenital Heart Defect Awareness Week! When I first started searching out other parents of tube fed kids online, it was the heart moms that I gravitated toward. There were so many awesome heart mom blogs, and so many of those kiddos had feeding tubes. Over the years, I have come to know and love so many CHD warriors and their warrior mamas, We ♥ tubies and we ♥ the ♥ kiddos!

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