I'm very grateful that this inspiring young woman reached out to me and wanted to share her tube feeding story on the Natural Tube Feeding blog. Jenna lives in New Zealand and has had a feeding tube since she was a baby. She shares how she slowly learned to eat by mouth over the course of her childhood and how she manages her feeding tube as a young adult. Thank you Jenna, for sharing your story. ~Claire
A gastrostomy feeding tube is one of the most fundamental parts of my physical being.
My childhood was not like the childhoods of most kids growing up in New Zealand. It was filled with appointments with dietitians and tube feeding through a pump. That’s just a small part of the jigsaw of my life.
My journey with my gastrostomy tube started when I was just 3 months old. On the day I was born; I had a left lung lobectomy after a tumor was found during an ultrasound during the pregnancy. After the lobectomy I was sent to Intensive Care at Starship Children’s Hospital in Auckland.
Because I struggled to breathe; I needed lot of tubes to help me. Because of this; I never had the experience most babies have when they learn to swallow. Instead of swallowing milk; I had tubes. Tubes to help me breathe and a nasogastric tube in my nose was used for feeding.
Because of all these tubes that were essentially keeping me alive; I developed an oral aversion and a strong gag reflex. In order to treat this I was given little teaspoons of milk at a time. At first I took this well and was eventually sent to the children's ward. There I was fed a little too much milk one day and because I didn’t know how to swallow I aspirated it into my remaining lung and needed emergency surgery.
For the next 2 and a half months my lifeline was a nasogastric tube.
Just before christmas of the year I was born; I was given a procedure called a Nissen Fundoplication (where the lower end of the esophagus is wrapped around the top of the stomach) and the gastrostomy. The procedure was done to prevent further reflux episodes and to make feeding easier for myself and my parents.
Because of my oral aversion; nothing could get close to my mouth without triggering a violent gagging reaction. As a result; my parents were told that I may never eat. The gastrostomy became my lifeline for nutrition as a toddler. My parents always looked forward to the day where I would one day eat. Eat a Happy Meal at McDonalds, or a family meal.
My journey of learning to eat started with my mother feeding me milk through a syringe. At first I would turn my head away; until one day she managed to get some milk into my mouth whilst holding my arms down. As she wrote in a journal: “I didn't want to be held and wanted to hold the syringe. My mother asked me: “Jenna would you like more?” I simply opened my mouth and she put some more in. One day at daycare; I even picked up a spoon from a bowl which had food in it (I hope it wasn't another child's food) and put it in my mouth.
I would also go to a child development centre a few times a week where I had therapy to overcome my oral aversion. One of the few therapies I responded to was music therapy which I talk about later on in this piece.
When I was 4 years old my family relocated from Christchurch to Hawkes Bay. This is where my journey to eating really began. I had a lovely Speech Language Therapist who gave my parents advice on how to get me to eat as well as teaching me to eat. On one occasion; she taught me how to drink a glass of water. I didn't know what swallowing was and vividly remember being told to swallow 3 times. To make it seem like I had swallowed 3 times; I simply put my tongue to the roof of my mouth.
As the years went by I learned to eat simple foods and flavours (butter sandwiches were a school lunch favourite). Breakfast, lunch and dinner was a chore as I would struggle to finish a meal as my stomach was so small. For five nights a week I would have the extra job of having to hook myself up to a feeding pump which fed through two bottles of formula loaded with calories so that I could maintain my weight. As I got older I could do most of it myself with a bit of help from my parents.
When I got to middle school or intermediate school as we call it in New Zealand; my upbringing became more normal as I discovered my talents as a singer and was able to participate in competitions and musicals. By this point I was eating enough food by mouth to keep me going throughout the day, but not enough to maintain weight. It was decided at a pediatric outpatient clinic that I still needed the tube for supplementary nutrition.
When I got to my teenage years and more so my early twenties and started eating out with friends; or even when I had a date. I suddenly became aware that I may struggle to finish whatever I ended up ordering. One time I had a lunch date and was so nervous about not being able to finish my meal I only ordered a small quiche.
It wasn't just eating I found difficult. I soon realized that I had a different looking tummy to most people; which impacted how I saw my body. I learned very early on that I couldn't wear items of clothing such as crop tops or clothes made of mesh materials. I didn’t want people asking me questions like: “Whats that under your top?” I really didn’t want to explain because I didn’t know and was trying to make sense of it all.
In my late teens; I became more aware of the fact that I was underweight for my age and tried so hard to eat foods that were full of calories. I began to use my dietary supplement as a milk substitute and used it in smoothies and coffees. A few years ago I switched from 2cal (which is calorie loaded and super rich) to Ensure plus (which is a lot easier on the palette). Recently; my weight is stable and I have ensure by mouth almost everyday.
In a society which is all about self image; self care and mental health; I am learning to love my tube. It helps me. Even as I was writing this article I realized that my tube is an extension of my body and helps my body function properly to a degree; therefore I should love my tube.
Maintaining the tube has been a journey itself when I moved cities to study music in 2014 I had to set myself up with someone who could change my tube every six months. There's a district nurse clinic which I attend once a month where I change the water in the balloon myself with a nurse providing some back up- making sure all the water is out so the balloon doesn't pop when I put the new water in. Then I let the nurses change my tube every 6 months. When I was a child; I got really nervous because it was so painful; I would scream my head off. However over the years I have been given coping mechanisms that I can use during the change. The tube gets used to my body and vice versa so of course my body doesn't want to part with it - it’s an extension of my body.
It’s been a journey to learn to eat with the help of my gastrostomy tube and develop my own confidence of taking care of it as a young adult. I’ve come a long way in my 23 going on 24 years. Today I still use my gastrostomy tube for bolus feeding to supplement my nutrition. There’s still more obstacles I need to navigate around in the future but for now; my Tube and I go on with life.
Jenna is on Instagram @jennamsearle