Here at TubieeGo we have personal experience of tube-feeding. Jenni recently shared her own journey as a guest blog post for Mum on a Mission.....
As a mum who tube-feeds, here are the 10 things that I would love people to understand about having a child who is tube-fed.
The transition to tube-feeding is not a small feat. I remember them calling it a ‘lifestyle change’ in the clinic room when they told me that my two-year-old son needed to become nil by mouth and tube-fed. I nodded naively and commented that if it was what he needed then we’d just have to get on with it.
I quickly learnt however that when your child becomes tube-fed you’re thrown into a new world and nothing looks the same. New terminology, new kit, new healthcare professionals, new routines. It’s like going back to having a new-born with none of the cuddles or celebrations. It’s relentless and never-ending. It doesn’t fit in with family life – morning routines are longer due to drawing up syringes and preparing feeds, school runs are interrupted by needing to change over bottles whilst crouched on the pavement and the blasted pump always alarms when you’re in a rush and don’t have time to sort it! Leaving the house requires a bag full of medical kit and being ‘out and about’ becomes stressful as you learn how to sort occlusions and calculate doses whilst coping with the normal world around you. You feel guilty because you have less time for your other kids and relationships and you’re exhausted. Even the poo is the same as a new-born’s – liquid in equals liquid out, enough said!
It fills every nook and cranny of your life. I now wash more syringes than dishes. My kitchen cupboards (and spare room and loft) are full of medical supplies and my Pinterest pages full of storage solutions for it all. It dictates when my son gets a bath, when he can go to bed and even what he wears. When I reach into my pockets there are giving set caps, syringe packets and medical tape amongst the usual lip balms and random hairclips. The reminders of the life we’re living are everywhere and the frequency of the pangs of sadness that initially caused were overwhelming at times.
It’s really hard to get a babysitter. Asking someone to look after your child when it requires tube-feeding training and emergency protocols isn’t easy. Even the extended family understandably shy away from the technology and procedures involved. As a result, I feel trapped by it. Most of the time it just means that I miss out on nice things such as afternoon tea birthday treats and shopping trips with friends but when I’ve gotten really sick it’s meant my husband needing to take unpaid leave to care for our son and it’s then that you realise how easily you can be plunged into crisis.
You spend a LOT of time at the hospital. We’ve attended over 30 appointments in the last six months including one general anaesthetic and surgical procedure, thankfully no admissions so far this year. Hospital appointments are tiring and time-consuming. Fitting them around naptimes means that they become the whole day’s activity and the next day is spent processing what was said so I now mentally block out two days for important appointments. This is at the expense of my capacity, friendships, and family time. Life looks very different to what it used to or what I would like it to look like.
Having a tube-fed child, or a child with any disability, can be really isolating. Not just because of the hospital appointments or routine changes but also because of the lack of shared experiences. It feels like you’re standing on the edge of ‘normal life’ (although I know deep down that there’s no such thing) rather than being part of it. Your priorities are no longer potty training, nap schedules, weaning, the school calendar or holiday destinations as they are now neurology appointments, video fluoroscopies and the next general anaesthetic.
It can have a negative impact on your mental health as a parent, which is something that I never expected. For the first six months I felt really stressed and leaving the house would result in feelings of anxiety for the remainder of the day. I could only cope with very basic and simple routines and adding anything else into life would tip me over the edge. I remember ‘freezing’ on the landing for at least five minutes on the morning of my daughter’s birthday party and feeling totally disorientated when I ‘snapped out of it’ and continued up the stairs to get what I went for! My son is under clinical psychology and at one point she worked with me. She asked me to imagine a place where I felt safe and relaxed and when I did the tears that I didn’t even know where there started to flow and I sobbed my eyes out. I think you end up running fast on the outside because you have no choice and because you want to keep up with your ‘old life’ but inside you’re broken and really sad, whether you can admit it to yourself or not.
It can have a huge impact on your child’s mental health. “Kids are resilient” is a phrase that we hear a lot but in my experience it’s not true and this belief results in putting kids through more than they can cope with and assuming that they will be fine. My son was most definitely not fine. The frequent experience of being taken into a treatment room and restrained by three people to have a feeding tube inserted down his nose broke him completely. He became anxious and clingy, unable to play and had panic attacks daily. He didn’t like physical contact or cuddles and if he hurt himself there was no way to comfort him. He was diagnosed with post-traumatic stress disorder at the tender age of two and it’s taken a lot of work and clinical psychology input to help him process all that has happened to him.
Surprisingly, it is all totally worth it! Tube feeding is keeping my son well and his lungs are now healthy as there is no longer milk and food ending up in there and causing damage. It’s for a purpose and it’s working. He’s thriving and we’re slowly getting used to it. I’ll never be happy about the fact that he can’t swallow safely but it’s amazing what can become your ‘new normal’ over time.
It can make your faith stronger, not weaker. If you don’t believe in God then you may not identify with this point but it’s the most important point to me so I’ve included it. I know that many people would question how I can believe in God or trust Him when my own son is suffering in front of me. I have certainly been angry at God but I’ve told God that and He’s big enough to take it. I don’t understand why this is happening but it doesn’t change the fact that God loved me enough to die on the cross for me so I can’t deny that He’s a God of love first and foremost. That means that I can trust Him, even if it involves outcomes that I don’t like. He created my son and my son ultimately belongs to God and God loves him more than I ever can. So whatever happens I at least know that we’re not doing it on our own, we’re doing it with God, and that stops me from being angry and bitter and makes me feel peaceful and hopeful instead.
At some point you start seeing the positives. Accepting the situation was hard but I can see good coming out of it too. My son is doing really well now that he has psychology input and is becoming wonderfully empathetic and gaining resilience, both qualities that will stay with him for life. Our daughters have a broader understanding of the world and are also more empathetic and accepting of other people. My relationship with my son is so much deeper having needed to support him through such a tough year and I’ve gained a wealth of knowledge and experiences which help me understand other people’s struggles better. I’ve built relationships with people in similar situations via social media and my eyes have been opened to the challenges faced by families living daily with disability, special needs and chronic ill-health.
Unexpectedly it has also led to setting up a business called TubieeGo which adapts and sells rucksacks for children and adults who are tube-fed. Our TubieeGo bags are having a really positive impact on the quality of life of people who are tube-fed which is wonderful and makes our own difficult experiences seem more worthwhile.
Six months into tube-feeding I was totally overwhelmed and saddened by the situation but now, a year on, I can see the benefits and the positives peeking out amongst the challenges. If you’re the parent of a child who is tube-fed then I salute you – it’s hard! And if you are reading this because you know someone with a tube-fed child then next time you see them, give them a big hug, tell them “well done” and then offer to learn what to do so that you can babysit!