Behold: Tube weaning research and guidelines

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That was then.

When is the last time a research paper made you cry? I received one, along with an article based on it, that moved me on many levels. I’d like to pass along this sought-after information to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as possible.

Supremely helpful insights and guidance are offered in the article, “Prevention and treatment of tube dependency in infancy and early childhood.” Details and analysis can be found in the research paper itself: “Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients.”

It is with great excitement that I share with this research on tube weaning. When Stella’s NG tube was placed, I immediately started researching the topic online and only found horror stories. I went into full-on panic mode immediately, because there was no helpful information. No hope. Only desperation and despair.

The above gems of knowledge come directly from Dr. Marguerite Dunitz-Scheer at the renowned tube weaning clinic in Graz, Austria. I’ve remained in contact with her since January, when she became part of Stella’s successful tube weaning team, providing email coaching from afar.

This is now.

I found these resources to be illuminating, bringing light to what was previously a dark informational void. They completely validated my feelings and my husband’s feelings–our whole struggle, our crazy experiences, our obsession–surrounding Stella’s feeding aversion and tube placement. It’s fair to say that in this case, reading was healing.

Why are these papers such a big deal? Well, as they point out, “There is extremely little literature on the explicit topic of tube weaning.” Because so little research exists, most parents and doctors are really just “winging it” when it comes to tube feeding and weaning. Yes, some children require tubes for survival and the paper fully acknowledges this. But so many children who are capable of eating on their own, whose core issues have been addressed but who remain *unwilling* to eat, are tube-fed for years, which needlessly and often dramatically lowers quality of life. There’s a better way, and we need to spread the word. More research is needed, but this is a fantastic kick-start. Hats off to the dedicated team in Graz!

I had an email conversation with Marguerite in regards to the problem of tube dependency in infants, which seems particularly pronounced in the United States. Here, children and their parents are sent home from the hospital with feeding tubes in place, but without anything resembling a clear time-frame or plan for tube-feeding, and certainly no plan or support for weaning. It is shameful. Our children and families deserve better than that.

I find these two excerpts from the tube weaning article and research to be particularly powerful:

“Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.”

“Parents of tube-fed children feel unhappy about their plight. If the duration of tube feeding exceeds the predicted period of time, they will wish to start tube weaning but lack the means to do so. A vicious circle of insecurity and desperation may result. Pressure and adult expectation build up, causing the child to resist any steps towards autonomy. Parents report feelings of anger, guilt and sadness at the sight of other children eating normally. In earlier studies (Lit 42,43) we reported that 86% of parents of tube-fed children suffered from overt depressive symptoms that disappeared after their children had begun to eat normally.”

The following excerpts should give you a quick, high-level view of the study (its purpose and outcome) as covered in the papers:

“Results: 203/221 patients (92%) were completely and sufficiently fed orally after treatment. Tube feeding was discontinued completely within a mean of 8 days, the mean time of treatment was 21.6 days.”

“The rationale for this retrospective study is to specify a successful tube weaning program in infancy. Many children remain tube dependent after successful healing of their underlying disease. Tube dependency often is accepted as ‘unintended side-effect’ of the treatment.”

“The main hypothesis of the study is: specialized treatment is highly effective and allows weaning severely impaired children even when numerous previous attempts had failed. The primary objective was complete weaning from long-term tube feeding based on sufficient, self-regulated oral intake.”

“The most important point of the model is the concept of full oral autonomy of the infant from birth and the implementation of this concept into the daily handling of parents and caregivers dealing with eating disorders, feeding disorders and tube-fed infants. Hunger is the main motivation for the attainment of self-regulated eating behavior.”

“[Tube] Placement must be preceded by clear criteria and a decision as to the indicated nutritional goal and time of use. The placement of a temporary tube must generate a plan covering maintenance issues including time, method and team for weaning. Aspects of tube feeding that go beyond purely medical and nutritional issues need to be considered in order to minimize the frequency and severity of unintended tube dependency in early childhood.”

Again, here are the links to the tube weaning research papers, and the corresponding publications:

Prevention and treatment of tube dependency in infancy and early childhood, published in ICAN: Infant, Child, & Adolescent Nutrition, Vol. 1, No. 2, 73-82 (2009).

Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients, for publication in Infant Mental Health Journal.

I would be thrilled if this helps even one other family. It’s an issue I feel passionate about, having been through it and learned so much in the process. Please feel free to contact me with any questions and I’ll help and support you as best I can. Thank you!

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Filed under Inspiration, Research and resources, The tube, Tube weaning

Tags: Austria, baby, bottle feeding, bottle refusal, child, Child & Adolescent Nutrition, dysphagia, enteral feeding, feeding issue, food refusal, g-tube, Gastrostomy, Graz, Graz method, graz model, ICAN, infant, Infant Mental Health Journal, infant nutrition, infantile feeding disorders, Marguerite Dunitz-Scheer, nasogastric feeding tube, nasogastric tube, NG tube, ng tube weaning guidelines, ng tube weaning success, oral aversion, Stella Johnson, tube feeding, Tube weaning research, tube weaning success, tube-fed infants, weaning