Some of the reasons given why your decision to tube feed your child Blended Diet is being unsupported
If you have answers to all these objections you are on your way. I'm going to give you some of these answers!
Your child will become ill with food poisoning because you are unable to provide a sterile or clean environment to store and prepare food.
BD is not an easy option. Feeding any child well is not easy. BD is more expensive for the parent. BD is more time consuming for the parent and BD requires more nutritional knowledge than the norm. For these reasons parents who opt to feed BD are well informed, willing to learn and able to understand the importance of food hygiene. Its inexpensive to complete a food hygiene certificate online if a parent is unsure. Using formula feeds is not without its risks if not handled well or tubes are not adequately cleaned if reusable. Feeding a child with a feeding tube BD requires the same degree of food hygiene preparation as feeding an orally eating child and the vast majority of parents understand the importance of food hygiene.
Some research here about food contamination with bacteria. Basically says this - 'Conclusion There is potential concern about bacterial contamination of blended feeds but this does not appear to be influenced by the method of preparation or storage used in this study'.
It has been noted that there were issues with gastroenteritis caused by food borne bacteria in the 1970s when liquidised feeding was the norm. Although this is true the ‘norm’ was in a hospital setting and hospitals are full of pathogenic bacteria.
Your child will become malnourished
The nutritional aspect can be understood and implemented using conventional learning techniques and aided by nutritional input from a dietician. The use of a high speed blender is usually necessary but not essential especially when starting out on food blending. Ultimately giving food can only be in the best nutritional interests of the child. Food encourages normal gut bacteria. Food can provide micronutrients not provided by formula feeds. Probiotics are not added to formula but occur naturally in food. The human gut evolved to digest food. The natural process of digesting food and eliminating it normally can facilitate toilet training which would have otherwise been difficult.
The main ingredients of many formulas are maltodextrin, vegetable oil, milk protein, sucrose and emulsifiers with added vitamins and minerals which may not be recommended as a diet for the long term. The need for medications to reduce reflux, gastric problems and constipation can usually be stopped. If the child is able to eat normally feeding palatable food will often stimulate the appetite. Many children eat their meals with the rest blended and fed via a tube. A child can be involved in their own feeding if food is blended. A parent can feel they are nurturing their child. This is all possible with BD and the use of nutritionally complete foods. The child will usually gain weight and height on a well balanced diet which will have a positive impact on their learning and health, particularly if vomiting has been a major issue on formula.
You will block the tube. The child will need surgery to replace it.
Yes and No. The issue surrounding blockage of feeding devices can easily be solved by blending food in a high speed blender and/or sieving. The most common blockers of tubes are medications. Frekka PEGs tubes are less likely to block because of the wide bore but they are the most problematic because of the need for surgical replacement. Sieving should always be recommended with these devices. The buttons and NG tubes are easily replaced, although from a cost point of view it’s important to ensure blockages do not take place by use of high speed blenders and sieving if unavailable. Replacement buttons like mini and mic-key are very expensive to replace (around £200) so it is important that blockages don't happen very often! Bear in mind though that blockages with formula occur, usually from medications. Fruit seeds are the main culprits with us.
Some research into blockages here, indicate a size 14 is the best for avoiding blockages, although those that occurred in sizes 10 and 12 were easily cleared with water. http://researchprofiles.herts.ac.uk/portal/en/publications/a-laboratory-evaluation-of-the-risk-of-enteral-tube-blockages-with-bolus-blended-feeding(70207cea-0707-43c8-aa7b-8059d1acdbce).html
We cant allow BD because if something goes wrong we can be sued.
Litigation or complaints against the health or school authority if feeding blended diet is mitigated by using disclaimers which are similar to patient consent forms. However they are not legally binding, more an agreement between the parent and organisation. Using the risk assessment forms from PENG are vital to cover both parties (links given later). Proper advice on hygiene, nutrition and support should also be given as they would be normally only with the focus on BD instead of formula. Litigation would only occur if there was genuine negligence and with guidelines in place this is an unlikely scenario, but would be viewed as any other case of negligence.
The blended food would need to be so thin to go down the tube it would have very little nutritional value.
Also of concern is the assertion that BD is of unusually low energy density because of the low viscosity needed to go through tubes. If there were issues of volume tolerance (which is the case with many tube fed children) then it is not feasible to blend an ordinary meal. Instead dense calories would be added, and calorific foods to increase the value but keep the volume low. The majority of my meals are equivalent to 400 cals in a 250 ml blend. This is of course what formula feeds also do, condense calories using corn syrup, vegetable oil, milk protein, etc.
It is also not necessary to thin the liquidised food to the consistency of formula. Provided it can be bolus fed via a syringe without undue pressure, the blends can be of a consistency of thick batter. Therefore it is possible to produce 250 mls per meal with a calorific value of 1.5-2.0 cals/ml.
The cost implication to the NHS is too great
There would initially be a cost implication for dieticians and nurses involved in the care of the child when there would be greater supervision in the initial period, but once the principles are established there should be little further input apart from regular height and weight measurements which are made routinely anyway. The cost implication is something that would take many years to fully assess. The obvious cost benefit to the NHS would be the savings in expensive formula feeds. A secondary saving would be in medications to combat gastric problems and constipation as these usually improve on BD, as well as expensive appointments to gastric paediatricians and hospital care requirements for these conditions. The improvement in the overall health of children on BD would theoretically save the health service money with fewer hospital admissions. With improved nutrition and physical wellbeing children with physical difficulties may be better able to lead independent lives. Children in school if better nourished would have increased learning ability. Indeed if formulas are not tolerated the dietician may have more to do with the child than one fed on BD.
The Tube might burst
It is also not necessary to thin the liquidised food to the consistency of formula. Provided it can be bolus fed via a syringe without undue pressure, the blends can be of a consistency of thick batter. Therefore it is possible to produce 250 mls per meal with a calorific value of 1.5-2.0 cals/ml. If there is any anxiety about tube pressures, the tubing itself is tested to 80psi and the mic-key button to 7.25psi, which although considerably less than the tubing, is still a pressure that someone is unlikely to exert while bolus syringing food. Our gastric surgeon commented that most children’s reflux, when given thicker foods (solids) resolves.
The Tubes need to be much thicker than the ones currently used
No, they dont. A tube size of 14 is perfectly acceptable. 12 will also work but will be harder to push. Most gastrostomy tubes are 14 and above. Naso gastric tubes are smaller generally and will need a thinner blend but this does not exclude BD in the slightest.
There has been no research to support giving blended diet and what research there has been has been negative. There were also incidences in the 1970s when patients became very ill on BD
Firstly there has been decades of research into the benefits of a good healthy diet so I won't go over that again.
There has been no research into giving blended diet as it is being done in the UK or America because no one has decided to fund or research it although this may change. Just because something is not research based does not mean it is bad or good for you. No one has researched whether falling under a bus is bad for you but we all know the answer to that one!
There has been a piece of research into whether children with fundoplication and gastrostomy do well on BD with regard to reflux and that was very positive.
It has been noted that there were issues with gastroenteritis caused by food borne bacteria in the 1970s when liquidised feeding was the norm. Although this is true the ‘norm’ was in a hospital setting and hospitals are full of pathogenic bacteria. In the home environment reasonable care is taken to ensure all children, whether orally or tube fed are kept safe from harmful bacteria. The method of preparing food for a tube is not so different from preparing for the plate if a parent opts for serving the same food at the same time as the rest of the family. Food is simply blended and given to the child following the usual hand washing precautions that were in use before BD.
There is also some research published by NICE in their Evidence Update which they accept has 'limitations'. I've copied it here in full rather than as a link as it is very important to understand how this may be used against giving BD. Superficially it looks as though patients in Poland were faring badly on BD. What is not considered is what their liquidised diet was like before Formula feeding. Was it excessively thin because they had no high speed blenders? Was it devoid of food which would clog the tubes or not go through a sieve, like meat? Did the carers have sufficient nutritional knowledge to feed the patient well? The fact that the hospitalised patients were anaemic and malnourished and had illnesses related to malnutrition such as pneumonia points to these probabilities. One thing notable is that there weren't cases of food poisoning! The observation that the homemade diets were 'unsupervised' to me says it all. If you are ever presented with this so called 'evidence', as I have been, argue the case that it is flawed research. Oh, not forgetting it was paid for by the formula manufacturer if I remember correctly!
FROM EVIDENCE UPDATE 64 - INFECTION (SEPTEMBER 2014) (NICE)
1.3 Enteral feeding
Education of patients, their carers and healthcare workers
NICE CG139 recommends that patients and carers should be educated about and trained in the techniques of hand decontamination, enteral feeding and the management of the administration system before being discharged from hospital. Follow-up training and ongoing support of patients and carers should be available for the duration of home enteral tube
The guideline also recommends that, wherever possible, pre-packaged, ready-to-use feeds should be used in preference to feeds requiring decanting, reconstitution or dilution.
Klek et al. (2011) conducted a before-and-after study in people using home enteral feeding to assess the benefits of a specialised nutrition programme comprising commercial enteral formulas and nutrition support teams. People who had been using home enteral tube feeding Evidence Update 64 – Infection (September 2014) 9 with homemade diets for at least 12 months were retrospectively identified from an electronic database managed by a home nutrition company in Poland. These patients were then started on a commercial enteral feeding formula and received regular follow-up support visits every 2–3 months from clinical professionals on nutrition support teams. The rates of hospital admissions and complications were prospectively assessed 12 months after the introduction of this specialised nutrition programme.
A total of 203 people receiving home enteral feeding were included in the study cohort, most of whom were being fed via percutaneous endoscopic gastrostomy tube (61%) or nasogastric tube (21%). The mean number of hospital admissions in this cohort dropped from 1.09 admissions (95% CI 0.96 to 1.22) in the 12 months before the specialised nutrition programme was started to 0.21 admissions (95% CI 0.14 to 0.28) in the 12 months after (odds ratio [OR]=0.083, 95% CI 0.051 to 0.133, p<0.001). The duration of hospitalisation and the duration of stay in an intensive care unit were also significantly lower after introduction of the programme (p<0.001 for both). Of the types of complication that led to hospitalisation, the specialised nutrition programme was associated with a lower prevalence of pneumonia (p=0.012), anaemia (p=0.012), urinary tract infection (p=0.018) and respiratory failure (p=0.019).
Limitations of this study include that it was not clear whether the beneficial effects of the specialised programme were associated with the commercial enteral feeding formula or the supervision by clinical nutrition support teams, or the combination of both. In addition, the observational nature of the study meant that it could not show causality, and the outcomes may have been influenced by confounding factors such as feeding tube type or indication for enteral feeding.
This evidence shows that commercial formulas for home enteral feeding and ongoing clinical support may be associated with fewer hospital admissions and complications than unsupervised feeding with homemade diets. These results are consistent with
recommendations in NICE CG139 for follow-up training and ongoing support of patients and carers using home enteral tube feeding, and that pre-packaged, ready-to-use feeds should be used wherever possible.
In schools and respite it is a health and safety issue and also a storage issue
It is not a Health and Safety issue it is a food hygiene issue. Schools have plenty of Food Hygiene certificates and standards. They have to by law, so it is just a case of accommodating your child and not disadvantaging them. They can store your child's lunch in exactly the same way they store other children's lunches. Cold food can be kept for 4 hours at room temperature before the risk of bacteria is in question. In our case the food is refrigerated at home and then sent in with the child and lunch time occurs on that 4 hour limit. It is easier for the school to have you blend the meals and send them in a form easily managed, such as drawn up into syringes or in clean containers. Ask the school or respite centre to blend meals is possible if they have the right equipment, but it will be more problematic and we want to make it simple so they can object less. Several schools and hospices are now blending meals from their menu for tube fed children, and I think it is becoming far more 'normal' than when we set out on our journey 5 years ago.
You will burst the balloon if the feed is too thick
The food goes in a channel through the balloon and it would be almost impossible to exert enough pressure at that precise point to rupture that channel into the balloon. Even if it did and pieces of the button went into the stomach it would be no worse than us swallowing a small piece of silicone. They are non toxic and not sharp. They would be excreted as any foreign body would be although there may be some unpleasant searching to locate the plastic! The Youtube link shows food, water and formula travelling through a button into an imaginary stomach.
Food may go into the abdominal cavity and cause peritonitis if the balloon or tubing burst
When a gastrostomy is made the long tube frekka peg is usually used because the backing inside the stomach is a close fitting piece of plastic and they are usually left in 18 months or so. Because of this snug fit in a very short time that part of the stomach wall forms a joining with the outside abdominal wall so that the gap inside the abdomen, which is usually there, is closed at that small area. According to the gastric surgeon who explained this to me, this rarely fails, although it is possible. Regardless of whether food or sterile formula entered the internal abdominal area in the rare case of failure of this join, it will cause peritonitis and be very serious. A breakdown in this join would be more likely if there was a lot of inflammation and infection which would be visible and would be treated promptly. Again these joins rarely fail.
If the child vomits formula and aspirates it into their lungs, its not so bad if it is sterile formula
It doesn't matter what's inhaled into the lungs it will cause an aspiration pneumonia and be very serious. Sterility doesn't make formula harmless in a place it shouldn't be! Of course, on BD children are less likely to vomit.