We should reconsider use of ready-made formulas for long-term tube feeding in children

Research on the diversity of gut microbiome raises questions about how we feed children who are not able to feed themselves

Having just retired after a 40-year career in nursing I’ve seen many changes, but one of the most significant developments is happening right now.

There is a growing demand to give children who need tube feeding a more natural diet. Picture: Getty Images

When I started out, tube feeding was much less common and when it was used, special feeds would arrive from the kitchen. As a young nurse I had no idea what was in them, and there was little concern about how they were stored.

Speaking to dietetic colleges now, it turns out they contained milk and raw egg. Not surprisingly patients often became ill with gastroenteritis. Fortunately for us, and our patients, feed companies began to develop sterile complete feeds, which certainly reduced the incidence of complications. The option to carry on feeding patients by tube at home became viable, and sterile ready-made feeds became the best solution for long-term feeding.

Growing number of tube feeding users

Decades on, we now have a growing population of children who rely on exclusive tube feeding. For the last 12 years I have worked in paediatric gastroenterology, part of the role being to support tube fed children. There is now a growing demand from parents to give their child a more natural diet, but this has led to conflict with professionals. The British Dietetic Association has supported its members by issuing a statement which, while not endorsing this form of feeding, offers practical advice about what to do for families seeking support.

To date there is no support from the nursing hierarchy for nurses involved with administration of home-made feeds, or for those teaching others how to manage tube feeding. There is an argument that there is insufficient research to support this method of feeding and professionals are concerned that the feed may not have been prepared or stored appropriately and that there is no 'quality control' over what is being given.

However there is a growing branch of research looking at the gut microbiome. Scientists are discovering that humans host a staggering array of microbes and each microbiome is unique to the individual. Although it evolves over the lifetime of the host, it becomes established over the first two years of life, when it is affected by factors such as breast feeding and weaning practice.

Significance of microbe colonies

A wide diversity of microbe colonies plays a significant health role, and changes in diet and the use of antibiotics can have profound effect on that diversity.

The number of children with long-term tube feeding continues to grow. This is a group of vulnerable patients with a wide array of complex needs. In South Wales we have been planning a research study for more than two years, and it is only now as I retire that we have received approval. The study will look at the difference in the diversity of microbiome between children on formula tube feeds and those on home-made feeds, and also compare siblings who eat normally.

Time for re-evaluation?

If we consider the changes in food practice over 40 years, the rise of organic farming, restrictions on feed companies to advertise baby formulas, campaigns to improve school dinners and the move away from processed food, perhaps it is time that we re-evaluate how we feed children who are not able to feed themselves. In light of this new branch of research surely it is time to acknowledge that a sterile ready-made formula feed cannot deliver a diversity of microbes.

Further information

Thomas S (2017) Multi-agency practice for developing a blended diet for children fed via gastrostomy. Nursing Children and Young People. doi: 10.7748/ncyp.2017.e821

About the author

Claire Sadlier is a former paediatric gastroenterology CNS for Noah's Ark Children's Hospital for Wales based in Cardiff

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