Last year, I shared our mutiny at rejecting processed milk and deciding to finally try blended diet for our son. Sadly, the level of scrutiny we were exposed to did not match the risks posed. We weren’t supported by our local team at the time of this decision and felt the need to justify and explain ourselves. We were asked to sign disclaimer forms which made blended diets sound like a hippy alternative therapy which would definitely cause more harm than good.
Here is an edited version of an email we sent which details why blended diet has been a life changer for our son.
Dear Dietetics and gastro team,
Having slowly started our son on a blended diet over the last 6 weeks, we have found a range of benefits for both him and us. In this short period of time, we have been turned from sceptical and hesitant, to utterly convinced about the remarkable benefits of blended diet despite the extra work it involves.
We have undertaken this process cautiously and meticulously, considering the published research as well as seeking independent professional dietetic advice and recommendations from the British Dietetic Association. Unfortunately, the processes, procedures and attitudes expressed by our local NHS Trust has been discouraging throughout.
To summarise the benefits we have noted:
- Significant reduction in gastroesophageal reflux symptoms (GORD)
- Reduced constipation
- Reduced reliance on prescribed medication
- Freedom from milk pump
- Avoidance of medical procedures
- Reduced cost to the NHS
- Sensory, socio- and psychological factors
- Improved gut and general health
Although this is our own personal experience, having read the research and spoken to specialist healthcare professionals and dieticians, we are not alone [more detail of these benefits can be found on here]. These improvements have been documented in various articles*. Given the plethora of benefits, it would be unethical for us to stop the blended diet.
Given the potential wide range of evidence-based benefits, we are sorely disappointed that as parents we have not been encouraged and supported to make the change to blended diet sooner. However, instead we have been asked to sign a disclaimer form which states,
This quote comes at the end of patronising and punitive toned document – with no evidence base for the dramatic warnings included. The form suggests that feeding our son a natural diet might in some way not only endanger him (with warnings as stark as peritonitis) but also poses dangers to hospital staff and other patients.
The wording and presentation of this clinical documentation details unfounded, unevidenced risks against widely documented benefits. One such policy document declares benefits are only founded on ‘anecdotal social media posts.’
This is both incorrect and gaslighting parents trying to feed their vulnerable children in a natural way.
This stance has turned the natural process of feeding ourselves and our children on its head.
It should not be the responsibility of parents to provide evidence that it is ‘good’ to feed their children normal food. Rather, it ought to be the clinician’s responsibility to provide evidence that the medicalised alternative is in some way superior.
This imbalance of perspective doesn’t present blended diet as the natural form of feeding it is. Rather laboratory manufactured, sterile, artificial nutrition is considered the acceptable norm and void of the level of scrutiny being afforded blended diets.
As parents we are heartbroken at the number of Christmas dinners, birthday cakes, meals and even treats we have missed sharing because we were at no time encouraged or supported to try blended diet. We realise now that when we were told to stop feeding our son orally (because of an unsafe swallow), we could have simply started providing the same blended food he had been eating but instead down his tube. We will always carry the guilt of not pursuing this form of feeding and losing over 14 years of natural nutrition.
As parent’s we want to work with the local gastro and dietetic team to give our son the best nutrition possible. We hope we can work together effectively moving forward.
It has become the new way of life for our family. The whizz of the blender wakes children up in the morning and identifies it is time to sit up for dinner as our son’s meal is being prepared to be served. My son’s diet is now solely blended (requiring more work and more cost for us) and we’ve learned what works and what doesn’t. Instead of being connected to a milk tube for hours every day, we have found he tolerates the thickened fluid of blended diet much faster without any signs of reflux.
His new diet has been analysed by the dietician and provides better nutrition than the pre-packed-processed milk he was previously given (he has multi-vitamins for random micro-nutrients none of us get in our diet!). We may not have mentioned the McDonald’s he had but thankfully the dietician is now working with us (although we didn’t ever sign the forms and our previous email hasn’t ever been mentioned).
For families like us, we need to be served better by the dietetics and gastro teams. As a team working together, we can provide healthy, balanced and natural food for our children – whether they are fed enterally or not.