Nutrition is never a simple matter if you have gastrointestinal difficulties.
As a parent of a tube-fed child, I’ve spent long frustrating periods of time at Great Ormond Street hospital tackling reflux and feeding difficulties, with the help of various forms of tube feeding and TPN (total parenteral nutrition).
For my daughter and many children like her, tube feeding has literally provided a lifeline.
This week is Tube Feeding Awareness Week, so I thought I’d take the opportunity to prepare an Intro to Tube Feeding with my parent’s hat on.
There are hundreds of medical conditions that can lead to the need for tube feeding – most of which you can’t see.
Tube feeding take place into the stomach or the jejunum in the small intestine.
Bolus feeds are the most common form of feeding, involving the administration of formula through a large syringe, that uses the force of gravity to control the speed of delivery.
Continuous feeds involve the delivery of feed at a set rate per hour, using a feeding pump such as Nutricia’s Infinity device.
Continuous feeds are particularly helpful when there’s a need to manage blood sugar levels (by providing a constant flow of feed/energy) and gastric reflux, where a low rate of delivery, helps to avoid a build up of feed in the stomach and the upward movement of stomach contents into the oesophagus.
Continuous jejunal feeds might be required when gastrostomy feeding isn’t tolerated or contraindicated with a particular health condition e.g. cardiovascular difficulties. It also safeguards against the risk of aspiration in some cases, where stomach contents travel up into the lungs and can cause pneumonia.
These include nasogastric and nasojejunal tubes attached to the cheek, which are inserted up through the nose and down into the stomach or small intestine, and are constantly flicked out by little hands causing much stress to parents.
MIC-KEY buttons and PEG’s are devices inserted into the stomach or jejunum under a general anaesthetic when there’s a need for long term tube feeding.
Mostly, tube feeds consist of commercial formulas with recipes devised, for the individual, by hospital dieticians .
There has been a growing awareness of a blended diet in recent years. This involves the administration of ‘real’ food that has been processed to a smooth consistency to enable it to be delivered via a feeding tube into the stomach. Some parents take a mix and match approach using some formula meals and others that are made up of blended food.
Conditions Requiring Tube Feeding
There are too many conditions to list, but some of the most common conditions I’ve come across as a GOSH parent (not as nutritional therapist) requiring tube feeding include:
Short gut syndrome, Chronic lung disease, Hyperinsulinemia, Inborn Errors of Metabolism including Fatty Oxidative Disorders (FOD’s), Eosinophil-associated Gastrointestinal Disorders (EGID) and Ehlos Danlos (EDS).
New To Tube Feeding?
The move from food and even breast feeding to tube feeding can feel overwhelming for parents as they face uncertainty about feeding options and and have to watch their child endure feeding trials and hospital tests.
Then there’s the need to learn new medical procedures, master feeding equipment and skill-up with trouble shooting techniques to remove blockages etc.
Somehow you then need to incorporate the demands of new feeding routines into family life, whilst worrying all the time about your child’s health and feeding them in the future.
Eventually you adapt and are grateful when tube feeding resolves issues such as pain, motility, growth and development and provides access for horrible tasting medication and emergency treatment.
For Advice on Tube Feeding
You can contact your hospital dietician or medical team and also charities such as https://www.feedingtubeawareness.org
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