By Bradis Goodman on behalf of the Feeding Tube Awareness Foundation
Feed Intolerance Dominates All Other Aspects of Life, and Quality of Life Suffers
For nearly 18 months of her life, my infant daughter vomited several times a day. During those seemingly endless months, we worked tirelessly to find a feed schedule, formula, medication, or treatment of any kind that would put a stop to the misery she experienced on a daily basis. Over time, those of us involved in her care became desensitized to the fact that she was vomiting so much because we were all so used to it. Even our then 2 year old could anticipate and catch her baby sister’s vomit as if it was nothing out of the ordinary. The commonality of her vomiting and difficulty controlling it made it easier for all of us, both her family and her clinicians, to accept it as just another symptom of some undiagnosed underlying condition. However, looking back, it is clear to see how her quality of life suffered.
When adjustments to feed schedule, trials of various formulas, changes in caloric density of formula, and medications were unsuccessful at relieving the symptoms of her feed intolerance, the change to a gastrojejunal (GJ) tube was made. For my daughter, although the GJ tube did not immediately stop her from retching and vomiting, administering feeds jejunally meant that her nutrition, hydration, and medications went in and stayed in, and her stomach got a necessary break. After 2-3 months on the GJ tube, her quality of life started to change dramatically as she was no longer suffering from the physical and psychological impact that constant vomiting had had on her. After nearly 10 months with a GJ tube, we were able to successfully transition her back to a G tube. Once the feed intolerance was no longer center stage in her care, we were able to broaden and shift our focus to the other areas of her health and development, such as her various developmental delays, that had taken a back seat to the much more pressing issue of identifying the cause of her vomiting and stopping it.
Good management of tube feeding makes a world of difference in all aspects of a child’s life. Everything is more difficult for a child who doesn’t feel well. If the only way a child ever tastes formula or food is when it is coming back up, he or she will not want to eat. Optimizing feed tolerance means opening the door for development of oral eating skills and improving oral calorie intake. It means reducing the stress of parents who agonize over every calorie that goes in and comes out. It means being free to shift the focus to other areas of need. It means having the energy to play and to fully participate in therapy sessions, and it means an overall improvement in health and well-being. A child who is adequately nourished and hydrated stands a much greater chance of overcoming whatever medical conditions he or she is fighting against and reaching his or her full potential in life.
My daughter’s story is, unfortunately, not an anomaly. At the Feeding Tube Awareness Foundation, we hear from many parents whose children’s quality of life is adversely affected by feed intolerance and they aren’t sure why their child is vomiting. Some parents erroneously think that a lot of vomit is par for the course with tube feeding. Educating them about the multiple factors that impact feed tolerance enables them to work more efficiently and effectively with their clinicians in finding what works best for their children.
Guidance from and collaboration with medical professionals can make all the difference in managing feeds for a better quality of life. Parents and caregivers want to understand feed intolerance and what to expect given their child’s medical condition. At home, tube feeding becomes a rigid and routine procedure that is performed the same way, day in and day out. This is especially true when parents fear making mistakes or are new to tube feeding. Helping them understand the parallels between tube feeding and the way that other people eat on a regular basis helps them to better understand what they see in their children who struggle with feed intolerance. Encouraging them to keep written notes to track symptoms is one way for clinicians and parents to come together and ensure that the success or failure of a particular change in care can be accurately detected.
As parents, we want nothing more than to see our children thrive. Working with clinicians who share a common goal to keep quality of life for patients and their families as a priority gives us the support and encouragement we need in order to make that happen.
Brandis Goodman is the Chief Multimedia Momma and Facebook page administrator for the Feeding Tube Awareness Foundation, a 501(c)(3) nonprofit organization. The organization’s Facebook page is the largest online support group for tube feeding in the world. Brandis is also the author of the blog, Feeding Raya: The Story of a Girl and Her Feeding Tube (http://agirlandhertube.blogspot.com ), which has been named a Top Special Needs Site.
The views expressed in this post are those of the author, and do not necessarily reflect the views of A.S.P.E.N.