What is Enteral Nutrition?

Enteral nutrition is providing nutrition and fluids into the digestive tract when a person cannot eat or drink enough via the mouth.

Enteral nutrition feeding is often discussed in medical terms. If you google the words you will be met with a lot of anatomical diagrams of the digestive system and some very clinical language. It is true to say that the beginning of someone’s enteral feeding journey usually takes place in a hospital and under the guidance of medical and allied health professionals. However, beyond the clinical stories are stories of the people behind the tube. People of all ages, abilities and conditions who live their lives in the community with enteral nutrition support and I want to tell you a little bit more about them to illustrate what enteral feeding can look like for the clients that I see.

Racheal’s Story
Racheal is 24 years old and has recently started her bachelor of Arts at uni. Racheal is the youngest out of 3 siblings and is well known in her family for having the most wicked sense of humour. She loves seeing live music, the louder the better!
Racheal has been enterally fed since she was an infant. She was born with a range of complex conditions including cerebral palsy and epilepsy. Rachael has a severe dysphagia (swallow dysfunction), this has meant that oral intake is too risky and could result in choking or aspiration (fluids / food going into the airways) and chest infections.
Racheal has a PEG tube (percutaneous endoscopic gastronomy tube), which is a tube that passes through the outside skin of her abdomen into the inside of her stomach. This connection is made surgically creating a “stoma” or opening for the tube to pass though. The stoma heals around the tube within a few months of surgery and is not painful.
Racheal has had PEG tubes since she was very young, the tubes themselves need to be replaced every year or so due to wear and tear. Ever since Racheal was young people have been monitoring her nutrition and growth to ensure she is being adequately nourished. When she turned 18 she transitioned from paediatric services to adult services for medical and nutrition care which was a big change for her and her family. She mostly feeds herself with a commercially made nutritionally complete formula which has energy, protein, fats and oils, vitamins and minerals. When she was young her mum would often blend up family meals for Racheal to administer into the PEG tube, often called ‘blends’ so that she could share in the food that her family were eating.
Nowadays she finds that she mostly relies on the formula because it is easier to use when she is out and about. Rachael’s electric wheelchair conveniently has a place to attach her feeding pump and hang the container of formula so that Racheal can nourish herself on the go, which is useful for helping Rachael keep up with the pace of her lifestyle. Despite her swallow difficulties Racheal is supported in having “mouth tastes” where she can experience small amounts of a food or drink for the sensory enjoyment of flavour.

Mick’s Story
Mick is 10 years old and is in grade 3 at his school. Mick gets his greatest joy from jumping on the trampoline. He is always on the move. Mick is autistic and non-speaking. He can use an AAC to help him communicate.

Mick got his first PEG tube put in 10 months ago and he has been making figurative leaps and bounds since he has been getting consistent nutrition. Mick also has ARFID (Avoidant Restrictive Food Intake Disorder). Mick’s food intake has been limited since he was a toddler but became progressively restricted until he was left with 5 safe foods. Attempts at feeding therapy over the years seemed to have little positive effect and mealtime stress and anxiety had been high for everyone in Mick’s family. When Mick’s treating team suggested supplemental PEG feeding his parents were not sure, it seemed like a very invasive option and what would be the benefits they thought. However, as Mick’s growth was faltering, and he was refusing any oral nutrition support products, concern grew. Mick’s parents were reassured that PEG tubes do not have to be permanent. Once no longer needed the “stoma” which is the opening through the body that will close over and heal. PEG tubes are often considered a medium to long-term feeding option. NGT (nasogastric tubes) are a feeding tube inserted through the nose into the stomach and are usually used for short term feeding.

In Mick’s case his parents were aiming for the PEG tube feeds to provide a means to renourishing their malnourished son and enabling him to catch up to his growth potential as well as to take the pressure of trying to force or expediate his progress with expanding his safe foods potentially causing food trauma and reducing his intake further.
Whilst Mick continues to eat his safe foods his PEG tube feeds are only supplementing his nutrition, so he was getting a small bottle of formula twice a day via the PEG. More recently his parents have been supported in introducing blended diet in combination with the commercial formula by adding a small amount of blended food to his formula. His parents liked the idea increasing the diversity of Mick’s diet and felt empowered in their role of providing nourishment to him. In the last 10 months Mick has gained both weight and height and is once again tracking along his percentiles for growth. His parents report that he is more emotionally regulated and sleeping better. He willingly sits for long enough to receive his bottle of formula via the PEG twice a day often prompting his parents for a feed and indicating that he feels satisfied afterwards. There have also been improvements in Mick’s bowel habit which had long been a source of discomfort to him.

Mick continues to eat and drink his safe foods and fluids and mealtimes with his family have become less pressured. The family continues to seek neuro-affirming feeding support to rebuild trust and autonomy with food intake which might over time assist with growing his safe foods. Mick’s parents feel that the PEG tube has improved Mick’s quality of life and they are content to see him thrive nutritionally. They see the PEG feeds as a longer-term option with the possibility of reducing or weaning PEG feeds should his food intake expand.

Please note the people discussed are fictional characters, these stories are based on a collection of real people but their identities have been changed and mixed together.

Written by Eve Skliros, your Melbourne-based Neurodiversity Affirming Dietitian.

This article is intended as general advice only and does not replace medical advice. It is recommended that you seek personalised advice specific to your individual needs.