Gut Feel

‘Fracture Familiar’ etching, by Kathryn Lean

For the uninitiated, tube-feeding can be scary, sad and, let’s be honest, a kind of gross concept. We ask licensed clinical mental health counsellor Rose Reif, how can we come to terms with this different way of eating – and the emotions that come crashing in around it – as efficiently and painlessly as possible?

Whether it be for ourselves or our child, the prospect of eating through a tube can be, well, hard to swallow. It certainly was for me. As a parent to a kid with a profound physical disability, who already needs support to do so much, the new order of ‘nil by mouth’ hit with the force of a sledgehammer.

Here was yet another part of life that my son wouldn’t be partaking in. Be it Christmas stuffing, a sanga on the run or hot chips at the pool, food underpins life’s most special – and taken-for-granted, ordinary – moments.

Eating food is a human right, for crying out loud (which I was doing quite a lot of in the wake of my son’s damning barium swallow test). Once again, our kid was missing out. And so was I.

Research has shown that while the majority of parents experience a better quality of life after their kid has a G-tube placed, some mothers of children with cerebral palsy, like me, reported that feeding their kid via a tube ‘decreased their sense of normalcy and lacked emotional connection because feedings were happening outside of family mealtimes’.¹

Generally speaking, enteral feedings can impact the process of bonding and attachment between a parent and child. And when the omnipresent societal attitude is that we should all be raising self-feeding, independent children, parents who tube-feed their kids can feel like they’re failing.

In one study, mothers reported feeling anxious around the visibility of enteral feeding, pointing out that the equipment required - syringes, pumps, tubes, the whole kit and caboodle – drew unwanted attention.² Add to that the preparation of packing (and remembering) all of the stuff we need to pull off a feed on the go and many of us, understandably, opt to eat in.

I don’t need to tell you this stuff is scientifically proven to be stressful. Like most things that we hadn’t expected to be part of our story, tube-feeding can be tricky to come to terms with.

In navigating this new and complex space – and the emotions that greet us in the entryway – it can help to talk to someone about how you’re feeling. Perhaps, someone whose job it is to arm us with coping strategies.

Rose Reif is a licensed professional counsellor who helps disabled adults, parents of kids with disabilities, and spousal caregivers cope with anxiety, depression, and other challenges.

Due to of her area of expertise, Rose hears about tube-feeding much more regularly than your stock-standard mental health counsellor.

“I also hear from parents at all points in their journeys with tube-feeding – those who are contemplating tube-feeding and who are feeling fearful, those who have begun tube-feeding and are feeling frustrated and uncertain, those who are seasoned tube-feeders who don’t even really think of tube-feeding as odd anymore, and those who are transitioning out of tube-feeding and have a whole new set of food-related challenges,” she says.

I came to Rose as a parent struggling to adjust to my child’s new way of eating and she kindly agreed to share our conversation. Everyone’s experience is different and what you read here is not intended to be an emotional cure-all. Rather, some common concerns around tube-feeding have been raised and, thanks to Rose, professionally addressed.

Rose Reif

Rose, in your experience, what are parents worried about when it comes to tube-feeding their kid?

There are many concerns that parents have related to tube-feeding. Will this help my child? And if this is intended to be temporary, how will we know when it’s OK to transition away from the tube? Will my child be ostracised or bullied if other kids notice their tube? How will we manage tube-feeding while on vacation or when visiting family members? And, maybe most commonly, what if I screw this up?

My child recently started tube-feeding and I can’t get past the fact he can’t enjoy eating the way most of us do. It feels incredibly unfair. What are some things I can do, or ways I can think, to make me feel less sad about this?

First, acknowledge that it’s okay to feel this grief. Food is so much more than our source of energy. It represents our connection to our ancestors and just smelling certain foods can bring back some of our favourite memories. It defines our celebrations and can offer comfort when we are in pain. It makes sense that you are sad that your child may not have this same relationship to food that you do.

After acknowledging that your sadness is valid, spend some time reflecting on what else you’re giving up by initiating tube-feeding. The fear that your child may choke while chewing? Constant apprehensions about your child’s insufficient diet and how it might impact their physical development?

Endless battles with your child at mealtimes, followed by endless battles with family members who have all sorts of ideas about what you should be doing differently?

By acknowledging both your grief and your gratitude, you can hopefully find a more balanced perspective about tube feeding.

I read somewhere that mealtimes for kids with cerebral palsy can take up to 15 times longer than those of typically developing children of the same age - and this didn’t surprise me. I’m definitely looking forward to helping Arlo eat more efficiently, but I’m daunted by the idea of it happening through a hole in his stomach.

Again, knowing that it’s okay to feel this way and that you’re not alone in it can be helpful. Many parents worry that their own distaste related to tube feeding may influence how their child feels about the process.

Thankfully, we live in an age when many people are comfortable using online platforms to share information. There are hundreds of YouTube videos in which people share their journeys with tube feeding. Watching these can give you information, familiarity, and the knowledge that this, like so many other aspects of your child’s diagnosis which may have once seemed insurmountable, will soon be old hat. 

Yeah, I used to think my son not being able to walk would be the end of the world and I was dead wrong. But the practicalities involved with tube feeding are so complicated. What can I do to take the edge off this massive learning curve? 

Sometimes the best cure for this can be to teach the process to someone else. Even if you’re not yet ready to have another care provider step in and oversee tube feeding, act as if you are. Teach a family member, or even record a video of yourself going through the steps of preparing for and doing a tube feed. Just knowing that you know enough to teach someone else can be a great starting place. Some parents feel bolstered just by rewriting the instructions from the feeding team in their own words, and realising that they included all of the important steps.

But also know that most parents have missteps in tube feeding. You will probably have more than one occasion when things go wrong and it may get messy. Being prepared for this – even just by ensuring that you always have a set of clean sheets if you feed your child in their bed - can help you to accept that this isn’t a sign that you’ve failed, it’s just an unpleasant but expected stop on your journey to being seasoned tube feeding parents.

The mess is part of the reason why I’m hesitant to feed my child in public. I’m worried about people staring and judging us. How can I address this fear and deal with that judgement if it does come our way?

By knowing that it absolutely will happen. Do not attempt to feed your child in public if your mindset is ‘I hope no one sees, or stares, or says anything’, because people will absolutely do all three.

Instead, try to approach this scenario with thought-out intention. Ask yourself, if someone were to stare, or to say something unkind, or to ask an uninvited question, what is the absolute best way I could respond? What response would communicate to my child that they are not obligated to explain their needs to others, or to hide away to make other people comfortable? 

Don’t make it your goal to teach these people anything. Instead, focus your response solely on your child and their physical and emotional needs. That way, you can always win. But if you really feel you need to do something more, some parents like to have a typed-up card or letter that offers information to others. 

Strangers are one thing - the idea of my son being excluded from eating with his family and peers is another. What are some ways that I can temper this worry? 

Again, by knowing that it very well may happen. But you can certainly do things to prevent it. One helpful tool is to give an introduction letter to classroom parents at the start of the school year. In this letter, you can introduce your child, focusing on their interests and strengths. You can also share that they use a tube to eat, and give parents some guidance for when they interact with your child. 

You might say, “My child would love to come to your child’s birthday party. He doesn’t want to feel different from his friends. Please do offer him a piece of cake, or whatever the other kids are eating, so that he can practice saying ‘No, thank you’.”

You can also explain whether or not your child will tube feed during the party or playdate. Helping others know what to expect can help them to include your child to the fullest extent possible.

I love that. It might be a while before my son can say ‘no’ to a piece of cake in a universally recognisable way, but we are working on it. Speech is an area where we can envisage progress, but it feels like we’ve taken a massive step back with his feeding. What if he can never eat via his mouth again? How can I make peace with all of the uncertainty around what our future will look like? 

Stay focused on the present. Remind yourself why tube feeding was recommended for your child. What are the goals for tube feeding? How will you know if it’s working? What would be signs that your child may be able to eat both by tube and by mouth one day? Find reliable systems that you feel comfortable using to track data related to these questions. This will help you to do less emotional reasoning, which is the trap of thinking ‘I feel it, therefore it must be true’. 

Stay focused on helping your child meet their diet and health goals at this moment, knowing that this is the best way to help them develop a healthy relationship with food and eating over time.

1. Russell, M. & Jewell, V. (2018). Enteral feeding and its impact on family mealtime routines for caregivers of children with cerebral palsy: A mixed method study. Australian Occupational Therapy Journal, 65, 25–34. pubmed.ncbi.nlm.nih.gov/28850693/.

2. Craig, G. M. & Scambler, G. (2006). Negotiating mothering against the odds: Gastrostomy tube feeding, stigma, governmentality and disabled children. Social Science & Medicine, 6, 1115–1125. pubmed.ncbi.nlm.nih.gov/16122859/.