Why a feeding tube doesn’t mean the end to a healthy balanced diet
The only way?
My son William (Wilbo) was given a feeding tube because he couldn’t eat, he has complex care needs and an unsafe swallow. The feeding tube was provided complete with a pump, giving sets and commercial formula with training on how to use them. The combination of formula feed and its paraphernalia was presented as the only way to ‘eat’ with a feeding tube, so much so that at the time I didn’t even question it.
Looking back now I feel a little foolish for just accepting this at face value with barely a question. I am confident that if somebody had presented to me a pint of milk, with some syrup, sugar and protein powder to stir in before washing down a vitamin pill then I would have had some questions! If I was then told that this was every meal for the rest of my life, I would have assumed it to be a poorly executed prank and left without looking back.
I am perhaps being a little facetious but there has been an almost unbreakable link between having a feeding tube and commercial formula, for every meal. There is circumstance where commercial formula plays a critical role, it absolutely has its place in providing critical nutrition to people with certain needs and in certain situations. Challenging the idea that a feeding tube equals formula at every turn and breaking this perceived conditional link between the two was really where Wilbo’s Blends began.
The importance of a well-balanced diet
Across almost every society people are told the importance of a well-balanced diet for our health and wellbeing. The critical role a healthy diet plays is such that health agencies and governments around the world create guidance and incentives for people to encourage healthy eating. So, it’s not surprising that once the link between formula and feeding tubes is broken then the same principles of a healthy balanced diet still apply to people with feeding tubes as those eating orally.
Blended diet logic and benefits
When I started doing research into for real food for tube feeding, I came across the phrase ‘Blended Diet’ for the first time. Many people before me, using the same logic and drawing the same conclusions were taking what we all know to be a healthy diet, blending it up and having a blended diet. I read countless accounts from people reporting how symptoms like reflux, diarrhoea constipation had been reduced or stopped, something my son Wilbo battled with daily. People had more energy, looked and felt healthier, it was all so obvious, we all know exactly how having a healthy (or unhealthy) diet makes us feel.
I found published research that supported the anecdotal reports I had read and heard about the blended diet. The benefits also went beyond just nutrition. Mealtimes play such an important role in our social and family groups, simple things like choosing what you want for dinner, sharing a meal as a family or with friends is so important to all our well-being. We often take things like this for granted but people that use feeding tubes and carers and loved ones often live in a very medicalised environment, getting some level of normality from a shared mealtime can make a big difference. For me this is at its best when the whole family Wilbo, his sister and brother me and my wife all share birthday cake. Wilbo has a very obliging sister when it comes to blowing the candles out, but we all participate in this wonderful moment and share the cake (equally), I am sure that we are not the first people to have a candle on a syringe or blender too!
Reality of blending
Lived experience has also taught me that a blended diet is far from easy. Working out what to blend to get the right consistency to go through the tube is just the start. Which blender is best? This is perhaps the most frequently asked and hotly debated subject there is in blended diet circles, little surprise when they can cost hundreds and even thousands of pounds. Batch blend or one meal at a time? How do you store the blends? How do you calculate the nutrition and calories? Don’t forget the drinks.
Then there is the time. I have spent a whole day, shopping cooking and blending. Proudly taking a photo of the rainbow of blends before filling the freezer…but then needing to do it again before I knew it. Beyond the practicalities of making the blends there are numerous barriers and challenges. We are lucky that Wilbo’s school has been incredibly supportive in him having the blended diet at school. Most aren’t that lucky. This is also true of hospital, hospices, respite care and even carers at home. Going on holiday can be very hard with children. With medically complex children, taking the blender and everything needed for the blended diet, sadly for some, can be the final straw that means having a holiday is simply too difficult.
Why Wilbo’s?
We started Wilbo’s Blends with the goal of improving awareness and increasing accessibility to the blended diet for everybody who needs a feeding tube. Ultimately, we want to try and make it that little bit easier for people to have a healthy balanced diet and all that comes with it.
The first step in realising this was the creation of blends that are 100% organic real food, shelf stable and ready to go. It has taken two years of research and development, testing and trials to make this a reality. People often say if they knew how hard it was going to be at the start they would never have started. It is true we didn’t know how hard it would be when we started, but when you care so passionately about something that truly makes a difference it doesn’t matter how hard it is going to be its all worth it. We now have six recipes developed, two are available and already making a difference to people, with the others coming in the new year. We have been overwhelmed by the positive responses from the people for whom we have so much respect for, and empathy with.
Just the beginning
Wilbo’s Blends meals are just the beginning. We have created resources on our website to try and help support people on the blended diet and those looking to start. Working with our Advisory Board of clinicians, health economists, dietitian and health professionals we have multiple other projects and ideas that we are working hard on that we know will make a positive difference to people. The passion that has fuelled us to this point continues to grow and inspire us every day to do more. We will continue to drive progress for everybody using a feeding tube to have the same chance of a healthy well-balanced diet and all that comes with it, just like everybody else.
