I have often wondered why we don’t feed our gastrostomy-fed patients real food, and at the same time I have always assumed that it is because of the risk of tube blockage.
But that was before I got my Vitamix blender, and learnt how easy it is to make real food really smooth.
Then I met a mum who was feeding her daughter real food, including freshly squeezed fruit and vegetable juices, every day. Apparently she had no problems with blockage, and her child was glowing.
If it can work for one person, why isn’t everybody doing it? Why aren’t doctors recommending this?
From one perspective, children who are fed by gastrostomy – directly into their stomachs via a short feeding tube that goes through the skin of the abdominal wall – should be the best nourished children of all. Since they cannot taste their food, there are none of the problems of food refusal that parents normally face. We should be able to devise for them a diet that is as close to ideal as it is possible to gain consensus on.
Of course this may not be so easy, since there is no consensus on what constitutes the ideal diet for human beings, but some basic principles, such as the importance of plenty of fresh fruit and vegetables, should be straightforward enough.
Furthermore, the ready availability of nutritional monitoring websites (CRON-O-Meter, Nutridiary) and apps (MyFitnessPal) should make devising simple recipes that meet a child’s basic calorie and macronutrient requirements really simple.
Gastrostomy-fed children are some of our most vulnerable young people. Most have complex needs and mobility difficulties, and they are frequently at risk of acquiring recurrent infections – particularly chest infections. At the very least we should be feeding them the best food possible for maintaining a competent immune system.
In my book that means GREEN VEGETABLES and more GREEN VEGETABLES! Brightly coloured fruits and vegetables of all kinds that are packed full of beneficial phytochemicals and antioxidants. These are not optional extra nutrients in the human diet – they are essential for our good health and without them we get sick in all kinds of different ways.
So again, why aren’t we recommending this as a matter of course?
Well, apparently gastrostomy tubes are only licensed for use with specific (usually cow’s milk based) formulae. They are not licensed for use with real food, which means that a doctor who recommends this to his or her patient could be liable if there is a problem, such as the tube gets blocked (a risk with all gastrostomy feeds), or the patient is later found to suffer from some dietary deficiency. Without any official support, doctors are unlikely to assume this extra risk, and will continue to prescribe formulae that at the very least provide the basic calories, vitamins and minerals necessary for growth, if not for glowing good health.
I might also note here that gastrostomy tubes are unlikely to ever be licensed for use with real food, since real food benefits nobody financially, whereas there is considerable vested interest in the formula-feed market. This is the cynical view, since we should really be asking what is in the best interests of the child, and seeking the scientific evidence necessary to help us make that distinction.
As far as I am aware nobody has ever randomised a group of gastrostomy-fed children to blenderised diet or formula, and then followed them up over any length of time to determine outcomes. This is the study that would be necessary to answer the question. In the absence of any conclusive evidence supporting the use of real food, doctors are unlikely to feel confident to recommend this course of action to parents, even though the lack of evidence exists because no rigorous studies have been done, rather than because they have been done and shown no benefit.
One study has been carried out by Pentiuk et al. from the Division of Pediatric Gastroenterology, Hepatology and Nutrition at Cincinnati Children’s Hospital in Ohio (1). Published in 2011, they put thirty-three children who had had fundoplication surgery for severe gastro-oesophageal reflux on a pureed-by-gastrostomy-tube diet, to see if it improved their symptoms of gagging and retching. Over an average follow-up period of 6.2 months, 24 children (73%) reported a more than 50% improvement in symptoms on the diet, while none reported a deterioration. None reported problems with tube blockage. Average weight gain was 6.2 grams per day, with only four children losing weight on the diet. One of these four dropped out of the study as the family felt the diet was inconvenient.
In the absence of a control group for comparison (an equal number of children maintained on their usual formula feeds) however, it is difficult to draw any strong conclusions from this study. The children may have got better anyway, and there may have been significant reporting bias. The follow-up period was short and many potential outcomes were not examined, such as future hospital admissions, the need for further medications or progression to jejunostomy feedings to control symptoms, or the effect on other symptoms such as constipation. There was also no evaluation of the study diet itself, which included meat, oil, milk, yoghurt and sugar (and no green vegetables), to give a macronutrient ratio of 33% fat: 55% carbohydrate: 15% protein (yes, I know that makes 103%, but that was what they reported). Perhaps the diet could have prevented the need for fundoplication in the first place? We cannot know the answer to that.
So the study is encouraging, but not enough to change current practice. As is so often said, more research is needed. In the meantime, parents can of course do their own research and decide for themselves to feed their child real food, but in reality very few do, since they are generally without the support of their doctors and dieticians who are strongly recommending formula as the only option.
In addition it has to be acknowledged that feeding a gastrostomy-fed child real food represents a significant undertaking for parents who already have a lot on their plate looking after a child with complex needs. Real food is expensive for parents, high-powered blenders are expensive, and preparing food takes time and thought. It may not be very rewarding either, since the child cannot distinguish what they are being fed and so will show no appreciation for, or gain any pleasure from, the effort.
Real Food for Real People looks like an interesting website with lots of information on this subject, and an active Facebook group too. I can’t vouch for the scientific validity of any of the information provided there, but you might be interested to take a look and decide for yourself.
1) Pureed by Gastrostomy Tube Diet Improves Gagging and Retching in Children with Fundoplication. Pentiuk et al. Journal of Parenteral and Enteral Nutrition, Vol.35, No. 3, May 2011