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If medical professionals are considering giving your child a temporary feeding tube, you probably have questions about the process, the side effects and consequences, and just how long the tube will remain. In this article, we will give you a background on typical feeding tube placement and maintenance, provide you with weaning options, and inform you about all possible aspects of this intervention. That way, your child have the best possible benefit of this therapeutic measure.

1. Tube Placement
A feeding tube is a thin plastic device placed into one nostril (nasogastric tube) or directly into the stomach (gastrostomy) or gut (jejunal tube) to provide sufficient nutrition to support growth and development. At this point, your child’s medical team believes that tube placement will not be a permanent measure for your child, but a temporary one that might last for a few weeks or months. In most cases, your child’s individual medical history, their growth and developmental status, and need for sufficient nutritional intake will be the main reason for this consideration.

The actual placement of the tube depends on the kind of tube chosen. Depending on which tube is chosen, your child may need a short general anaesthesia, after which they will be able to receive additional nutrition by the tube. The tube itself does not hurt, but there may be some irritation at first, which usually does not last very long. All additional details: feeding times, necessary amounts, and the specific formula, will be suggested to you by your medical team. Please make sure you ask all questions you might have before the tube is placed, so you are well informed and ready to support your child.

2. Tube Maintenance
Your child’s medical team should include at least two professionals who will be responsible for and in charge of them for a set period of time and phase of tube feeding. This is usually your child’s pediatrician or general practitioner and a member of the paramedical team. You and your child should meet with your child’s physician(s) before tube placement to discuss a maintenance and tube exit plan. The physician will check the efficiency of tube feeding on a medical, nutritional, and growth related level. Initially, this will need to be done on a monthly basis. All functional effects on your child’s underlying medical condition and possible necessary therapeutic measures will need to be considered carefully. If you notice any negative side effects—for example, recurrent vomiting, gagging, skin irritation or pain—you should report these as soon as possible.

The second member of the tube-maintenance team will most probably be a speech therapist, occupational therapist, psychologist, or nutritionist who will focus their clinical expertise and attention on developmental matters and partner with you to make an individual support plan for your child. Most children may receive a small amount of fluids for taste stimulation or even some nutrition orally during the phase of tube feeding. This will depend on the underlying diagnosis and medical condition, but it still needs to be discussed carefully, as it is very important. This support plan will help keep up oral activity, give your child experiences of self-motivated action and positive sensation, and provide a link to feeling satiated even though they are being mainly tube fed.

3. Tube Weaning
When a feeding tube is not intended to be a permanent intervention, we recommend discussing the intended duration of tube feeding and define some goals and criteria for ending this measure for your child with your child’s medical team. Ideally, these goals and criteria should form part of the written tube maintenance and exit plan.

Depending on the goals and criteria to be met, a time will come when the medical reason for needing temporary tube feeds is completed, and your child will be allowed to make the transition back to full oral feeding. This phase should be supervised professionally, as starting to eat and drink may not happen on its own. It is important to report symptoms, such as food refusal or constant vomiting, as they may have an impact on the tube weaning process; furthermore, your child might need additional therapeutic support.

Your child’s medical team will help you provide support, so your baby can catch up with their eating development and learn the necessary milestones and oral skills of this process. Motivation to want to eat and sufficient opportunities and role models are important, but any kind of intrusive feeding is counterproductive.

4. Developmental & Psychological Issues & Considerations
Any temporary feeding tube should be removed as early as possible. If possible, this should happen between the ages of 6-12 months. The older your child gets, the greater the risk of developing a tube-feeding dependency. Most tube fed children will not simply start to eat on their own; they will need some additional support, and parents might also need of additional specific advice. Tube dependency is a rare condition where the child remains or seems to remain dependent on tube feeding without any medical reason. This can happen because the child has not experienced any positive oral sensations; they might suffer from constant satiety and therefore lack motivation to want to taste, touch, and have food. This can also happen because the child defines himself as being a tube-fed child and links feeling of identity and wellbeing to remaining tube fed. Because children learn to eat through self motivation and increasing their feeding skills, it is crucial to know how you can support your child in this process.

5. Needing Support & Help
Tube feeding is not usual, and it is important that you feel comfortable, well informed, and involved in decision for your child to receive a temporary feeding tube. The intervention should benefit your child’s future development, health, and growth, and all intended goals must be evaluated regularly to minimize possible negative side effects. Make sure to ask your professional team for help — doing so will help your child benefit from tube feeding.

Peter Scheer