My name is Karen Maude, founder of Balanced you Nutrition. I have a degree in Psychology, and I am a qualified nutritionist. But first and foremost, I am a mum of three, one of whom has complex medical needs and needs to be tube-fed. As this is Feeding Tube Awareness Week, I thought I would take this opportunity to prepare a brief introduction to tube feeding with my parent’s hat on.
But as a nutritionist, I will also stress that nutrition is never a simple matter if you have gastrointestinal difficulties.
Feeding Tube Awareness Week was launched in 2011 with a mission of promoting the positive benefits of feeding tubes as life-saving medical interventions. As the website stresses:
The beginning of February was selected [for Feeding Tube Awareness Week] because of it’s proximity to Valentine’s Day since we love our tubes. It can be challenging to have a lot of negativity surrounding the medical device that is keeping you, your child, or your loved one alive. This week, in particular, is an opportunity to embrace the positives and be thankful that it helps people to live, grow and thrive.
As a parent of a tube-fed child, I’ve spent long frustrating periods of time on children’s hospital wards at Great Ormond Street Hospital (GOSH) tackling reflux and feeding issues, 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.
Medical conditions leading to tube feeding
There are hundreds of medical conditions that can lead to the need for tube feeding – most of which you cannot see.
Some of the most common conditions I have come across as a GOSH parent (not as a nutritional therapist) requiring tube feeding include:
Short gut syndrome, chronic lung disease, Hyperinsulinemia, Fatty Oxidative Disorders (FOD’s), Eosinophil-associated Gastrointestinal Disorders (EGID) and Ehlos Danlos (EDS).
Placement of feeding tubes
Tube feeding takes 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 gastronomy feeding isn’t tolerated or considered to be safe and it also safeguards against the risk of aspiration, where stomach contents travel up into the lungs and can cause pneumonia.
Tube feeding devices
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.
Types of feed
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 gastrostomy into the stomach. Usually, NG tubes are too thin to deliver blended food without resulting in a blockage. Some parents take a mix and match approach using some formula meals and others that are blended food. Infants under the age of one should still receive the majority of their nutrition from breast milk and, or formula.
Your medical team will set you up with regular deliveries of syringes (large ones for bolus feeding and smaller ones for flushes and the administration of medication). You’ll also need extension tubes, feeding sets, possibly a feeding pump and accompanying backpack for when you are out and about, plus spare buttons if you use a MIC-KEY device. You’ll also need to consider using a steriliser if your child is fed into the jejunum or you have a baby under one year.
Your dietician will have selected an appropriate feed for your child. Some are pre-made formulas e.g. Neocate’s LCP Hypoallergenic feed or you may need to make up a specific recipe, tailor-made to your child’s needs, requiring specialised feed components. These may restrict, eliminate or add more of a particular macronutrient to help children with the likes of metabolic disorders, kidney disease and seizures. For instance, children with fatty oxidative disorder will have restricted fat limits and increased carbohydrate needs.
If your child is tube fed into their stomach then you can apply a standard approach to cleanliness, ensuring you always wash your hands before touching the site or their feeding tube/set. If, however, the feeding route is via the jejunum, then it is important that feed preparation and administration is conducted in a sterile environment with the use of a steriliser when preparing bottles and syringes.
New To Tube Feeding?
The move from food and even breastfeeding to tube feeding can feel overwhelming for parents as they face uncertainty about feeding options and have to watch their child endure feeding trials and hospital tests.
Then there’s the need to learn new medical procedures, to become adept at troubleshooting techniques to remove blockages etc. and competencies in feeding equipment to master.
Video to demonstrate bolus feeding
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 will adapt and are grateful when tube feeding resolves issues such as pain, motility, delayed 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 the Feeding Tube Awareness Foundation. The web site has a huge range of support resources. You might also like to join their Facebook community which has almost 60,000 followers. Sometimes the very best support is by having conversations with people in a similar situation as yourself.
Do also feel free to contact me