Back to School: Navigating Tube Feeding and a Blended Diet
For many families, getting ready for a new school year means new uniforms, packed lunches and getting back into a routine. For Elin and her family, there are a few extra things to think about. As 13-year-old Elin prepares to start at a new school site, her mum, Tova, shares what goes into getting ready for a new term with a feeding tube and blended diet, and the importance of working with school staff to help Elin enjoy school life alongside her peers.
This article shares Elin and her family’s personal experience of tube feeding and using a blended diet at school. Every child’s feeding needs and care plan are individual, so please speak to your dietitian or healthcare professional for advice specific to your child. All views expressed belong to Elin and her family, and do not necessarily reflect those of Talking Tube Feeding.
Introducing Elin
My daughter Elin suffered severe brain damage due to oxygen deprivation at birth. She now has quadriplegic cerebral palsy, complex medical needs and, since she was five, a feeding tube. Elin is 13 now and has gone from nasogastric (NG) tube to PEG (Percutaneous Endoscopic Gastrostomy) feeding tube to Mic-Key™ button and is now fully tube-fed and on a blended diet.
Elin’s feeding journey has certainly not been straightforward. As a newborn, she was kept sedated in an incubator and we were told that her brain injuries were so severe she may not have a suck and swallow reflex. She went on to defy those early expectations, and we were able to breastfeed for two years.
Slowly, much later than babies without severe disabilities, I started weaning her onto purees, which was a painfully time-consuming process. I had to help her learn how to manage puree on a spoon and how to swallow that, while keeping her from choking and aspirating, as well as preparing healthy food for her. Yet, once that weaning process started, she stopped gaining weight. This eventually led to a diagnosis of faltering growth, and we were told she would need a feeding tube.
Blended Diet in School
Elin attends a special needs school and is in a class with other PMLD (profound and multiple learning difficulties) children. Some of them eat orally with the help of staff, some of them are on tube-fed formulas, and a couple are on a blended diet. None of them can eat independently.
When we switched her over to a blended diet, this was not supported within our local authority and school was legally not allowed to feed her. For a full school year, her dad and I came to school every day to give her lunch. She was taken away from her classroom, and we sat in a side room to give her food.
During that year, I worked hard with the dietetic team. I got blended diet policies from other authorities that had adopted it. I downloaded clinical advice papers. I wrote food diaries, with recipes and complete calorie, macro and micronutrient breakdowns. I weighed every ingredient, measured every meal and did all the math’s. I worked with her carers and with professionals, and then I won. By the end of that year, blended diet was officially supported in our local authority, school staff were fully trained and she was finally allowed lunch in the school dining hall.
Getting Ready for the New School Year
In a couple of weeks, the new school year starts again and Elin is moving to a new school site that has been purpose-built to care for children with PMLD. While a lot of the staff are moving with her, this is a school that has not yet had pupils who are on a blended diet.
This move and the start of a new term mean that I have had to step up my advocacy work. I have sent in paperwork to the new school detailing Elin’s dietary and feeding requirements, and had conversations with the school nurse about making sure training is put in place.
I have also started preparing a stash of blends to go in the freezer, ready for me to heat and bring on the days when it is my turn to go in and give her lunch until the staff training is done and school is managing her feeds completely. And at some point, it is time to pack her school bag, with extension tubes, syringes and the ever-important spare Mic-Key™ button in case it gets accidentally pulled out.
School Life Beyond Tube Feeding
I didn’t want a feeding tube for my daughter. It felt so alien to me that she should be fed in such a clinical manner. That one child in her class would be tasting food on their tongue and getting gloriously messy, while my child should just have something pushed straight into her stomach with none of the sensory experiences that come with enjoying a good meal. But the truth is that the feeding tube has allowed her to be a bigger part of her school life.
It is actually easier, in many respects, to tube-feed on the go, or in different settings. Mealtimes no longer take an hour or more, freeing her up to take part in activities that she enjoys more. And the feeding tube has not prevented her from taking full part in her most loved activity of all: swimming in the hydrotherapy pool. If she got to choose, she would spend every day in the warm water and never get out.
Your Tips for Other Parents and Carers
What we parents need is people on our side. Like Elin’s school nurse who helped me get blended diet officially supported in our local authority, and now takes responsibility for training not just school staff but the respite care home too. We need to be able to send our children to school and feel confident that all their needs will be met.
Communication is key. I joke that I have a PhD in Elin and, like all the best jokes, there is a lot of truth in what I say. It was annoying to have to go into school every lunchtime for a year, but we gained such a close relationship with the staff who are with her every day, and they in turn help train new staff.
Closing Thoughts
Having a tube-fed child is so wildly different to how we are used to experiencing food. No clinking of cutlery, no picking which tidbit to eat first or perhaps savour last. And most other parents cannot wrap their head around the concept of going in to feed their child lunch every school day. And while many parents pack a school lunch, how many have had to sterilise a tube and a syringe to go in that lunch box?
What I do know for sure, though, is that we build routines around what is normal for us. I barely remember how I structured my time around those school lunches five years ago, but I know that I did. Now the routine includes drafting a feeding schedule, sending in supplies, being on hand to answer questions, and sometimes batch cooking and freezing ahead just in case.
The feeding tube will not put your child at a distance from their peers. It is what can actually allow them to be included in the rest of their class and school life. And remember: no one advocates for our children the way that we do.
If you’d like to share your tube feeding journey with us, we’d love to hear from you. Contact talkingtubefeeding@uk.nestle.com.
