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This article is the second of a three part series looking at important information before, during and at the end of tube feeding and is aimed to highlight both the positive and negative effects that can result from tube feeding from the perspective of the child, parents and health care provider.
Making the change to tube feeding is a huge adjustment for your child; usually after the tube has been fitted it takes 1-3 days for your child to get used to the new feeding situation. The aim of the tube is to bypass the mouth and deliver nutrition directly to the stomach or jejunum (the first part of the small intestine). Your child may have been fitted with a naso-gastric tube, gastrostomy or jejunostomy, depending on the intended duration of feeding and other procedures performed at the same time.
Enteral feeding (ENS) can be given continuously, or at intervals of 3-4 hours. The schedule, volume and formula will have been decided based on what best fits your child’s illness, size and nutritional needs. Suddenly your child’s life is organised around the dietitian’s calculator and schedule of feeds.
While little is known about how an infant perceives the presence of a tube we do notice that the urge and pleasure of oral intake drops rapidly, and even if they are physically able to feed orally they stop having any interest in feeding. Whether this is to do with constantly feeling satiated or even overfull, or because of the absence of exposure to visions, smells and tastes of food is unknown.
Once tube feeding has become established the day is spent balancing the aims of getting sufficient nutrition with the risk of detrimental effects on lung function, reflux and discomfort.
Some children will struggle to establish effective tube feeding. They fail to handle the volumes needed to obtain sufficient calories, the time intervals between feeds feel too short and they get nauseated or vomit. In some cases the tube feeding alters the release of pancreatic enzymes needed to digest and absorb nutrients, upsets the regulatory bowel hormones and restricts bowel peristalsis (The waves of muscular contractions that move food along the bowels). These children may fail to reach their weight or growth targets and may exhibit aversive behaviors such as food refusal, gagging, retching and vomiting.
From a parent’s perspective once the feeding tube has been fitted the first feeling is often one of relief and decreased stress. Their child is now finally receiving the valuable nutrients they need and, if food aversion is the reason for the tube, they can now have a break from the hours of feeding trials and seeing their child refusing every attempt at meal sessions which can often make them feel they are failing as parents.
During the first days and weeks you should receive good support from the medical team who were responsible for the tube placement and you may be lucky enough to receive a specifically assigned feeding team to take care of all your questions concerning the tube feeding, from choice of formula, volumes and technique, to managing side effects such as leaking and granulation tissue.
Hopefully this peace will last and your child will continue to thrive, meeting their growth targets and getting good support, including advice on how to maintain interest in oral feeding until the end goals have been met. In this case the responsible feeding team will then suggest an exit strategy and your child will go on to be successfully weaned from tube feeding.
In some unfortunate families parents may feel abandoned by the medical team with little support and advice, often with a child who is getting little benefit from the tube and is getting severe side effects such as frequent vomiting, nausea, pain, sweating and malnutrition. In this case tube dependence may be the problem and the best solution you need is help, support and a plan to get out of the trap of tube dependence as soon as possible. This is a situation where NoTube has extensive experience and can be of help.
For medical professionals the phase of tube management which follows tube placement can vary immensely.
When the child tolerates tube feeding well and succeeds at meeting their targets with minimal intervention you can feel like a true hero, the child is thriving, the parents are grateful and you leave work with a spring in your step. In this case your only role is to monitor target achievement and change feeding rate or formula depending on the response and any underlying conditions.
Sometimes it takes a few trials and errors before the best regimen is found. This is easier to deal with when you have compliant families and a good team who work together to reach the best outcome.
During both these scenarios the child should be supported by a team of therapists (speech, occupational and physiotherapists) to help preserve oral functions with the aim of a smooth transition when the enteral nutrition is no longer needed.
The real trouble is in those instances where tube feeding does not show the expected positive effect. At this point ‘optimised enteral feeding’ attempts will be made, compromising targets for the sake of reducing ill effects. It is common when a family is struggling to make progress in this way that they will look for other providers of care in search of a second opinion, desperate for a solution to aid their child. Seeing a child who is not responding despite your best efforts can knock your confidence as a medical professional, despite knowing you are trying your best, and poring over every published guideline available for this situation, you can end up waking at night doubting yourself, and it can damage the working relationship between you, the child and their family.
As experts in tube weaning and management of tube side effects we would encourage both health professionals and parents to remember that stopping tube feeding may be the best solution where it is proving to be ineffective and nutritional goals are not being met.