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We thank those who have shared their story here to help raise important awareness. If you'd like to share your tube feeding story, please contact us.
Angus's Story
This is Angus AKA Gussy, he was born 10 weeks early on the 14th of November 2020 due to placenta abruption and fetal distress. He spent nine long weeks in between three different NICU's (Royal Women's, Wollongong and Shoalhaven). During this time he required a lot of breathing interventions and was on a feeding tube 90 percent of the time. They removed his tube 4 days before he came home and he was still having some slight difficulties breastfeeding but Doctor's weren't concerned.
It wasn’t until the 18th of February 2021 3 weeks after being discharged that he was rushed back to hospital by ambulance due to not breathing during a breastfeeding. We spent 3 days in hospital before we were discharged. A couple of days later l was on my way to Sydney's Children hospital for a cardiologist appointment when he stopped breathing in the car. When we got to the ED they asked me to show how he feeds, two sucks in and he stop breathing needing to be bagged and suction. Within 30 minutes of arriving Angus had a feeding tube placed and was deemed too dangerous to feed and was now NIL by mouth. It wasn't until a few days later after many tests that we found out Angus has a very dangerous suck and swallow which nearly killed him as he was aspirating into his lungs. We spent many weeks there working out what was wrong with him, and that's when we found out he would be going home on oxygen and NJ feeds 21 hours a day (due to really bad reflux, central apneas, dangerous suck and swallow causing aspiration and failure to gain weight).
Hunter is 15 years old. He has had a feeding tube for six months and is on the waiting list for a gastrostomy. He has several disabilities; autism, epilepsy, developmental delay, two chromosomal abnormalities, ehlers-danlos syndrome and eosinophilic oesophagitis (EoE). Over the last few years Hunter has lost over 25kg in weight. Dietitians and specialists tried all they could think of but food gave him constant pain. 18 months ago Hunter had a seizure which lasted 42 minutes and resulted in brain trauma. Since then he has barely touched any food and has lost some sense of taste and smell due to the brain trauma. Because of this, he had the nasogastric tube put in.
About three months ago he had a laparoscopy and two biopsies and was diagnosed with EoE. It was good to finally realise what all his pain was from. He admittedly is not happy having a nasogastric tube but his PEG surgery has been put off for several months due to COVID.It’s good that he is getting nutrition however and gaining weight.His best mate Rory (baby in the pic), has cerebral palsy. They have a special bond because of the nasogastric tube. 😀
Story contributed by Amanda; January 2022
Remember that there are many different reasons why people have feeding tubes, and some of these reasons make it difficult or dangerous to eat by mouth. However, this is not the case for everyone. If your doctor tells you that you need a feeding tube, it can be a lot to process. It will change your life, but for the better. There will be a lot of adjustments, but you’ll get the hang of it. A feeding tube can be uncomfortable and even painful sometimes. You’ll need to adjust your sleeping position and make extra time to clean and maintain your tube and to handle any complications. When you can’t eat the same way as everyone else, it can change your social life and make you feel left out. You may feel self-conscious about your tube and it’s okay to feel like that. ❤️
You can follow Tayarra’s journey on social media: Facebook: Tayarra's Story
Instagram: @tayarrasmithTikTok: @tayarrasmith
YouTube: Tayarra Smith
Twitter: @tayarrasmith
Story contributed by Tayarra; December 2021
Dusty-Mae's Story
Dusty-Mae was born premature and unable to breathe on her own, after a complicated pregnancy where my water broke at 25 weeks, I went on to carry her longer and deliver at 33 weeks. The first time we saw her she had a green feeding tube, but at that stage we had no idea which tube and wire was which.
In the NICU we were taught to feed her with the tube and it became less scary.Eventually we got home but for unknown reasons she was not feeding well and allergic to everything, repeatedly for the first 18 months of her life she had tubes in her nose (nasogastric) and then just before age 2 she was changed to a permanent gastrostomy tube for enteral feeding. Dusty was not diagnosed until age 5, she has a rare chromosomal disorder meaning she has missing genes as well as extra genes where they don’t belong. If it wasn’t for her feeding tube she would not be alive today, as it took so long time to find her rare disease, no doctor could anticipate what would be wrong with Dusty or how to treat until it was happening.
In the NICU we were taught to feed her with the tube and it became less scary.Eventually we got home but for unknown reasons she was not feeding well and allergic to everything, repeatedly for the first 18 months of her life she had tubes in her nose (nasogastric) and then just before age 2 she was changed to a permanent gastrostomy tube for enteral feeding. Dusty was not diagnosed until age 5, she has a rare chromosomal disorder meaning she has missing genes as well as extra genes where they don’t belong. If it wasn’t for her feeding tube she would not be alive today, as it took so long time to find her rare disease, no doctor could anticipate what would be wrong with Dusty or how to treat until it was happening.
When Dusty was 4, I myself became very sick, I suddenly lost a lot of weight and didn’t know what was happening. I had terrible pain in my stomach.My colon had stopped working completely and my upper digestive tract slowed down. I got diagnosed with gastroparesis.I myself ended up with a feeding tube. I had surgery to remove my colon and I now need both a gastrostomy tube like Dusty, and another tube often called a J tube, that feeds past my stomach.It’s still very strange to me that something that was once unfamiliar and scary is now such a big part of our life. My husband and son still have my daughter and I thanks to feeding tubes.I now dedicate my life to raising awareness around disabilities and illness.
Story contributed by Violet; February 2021
Fatima's Story
My Tubie Princess Fatima was born on the 4th September 2016. She was diagnosed in utero with a rare chromosomal disorder called Prader Willi Syndrome (PWS). Fatima had a nasal gastric tube since birth because she didn't know how to suck or swallow. She slept all the time and never woke up or cried for a feed. She could have gone all day without eating. This continued for the first 6 months.
Fatima began speech therapy at only 4 days of life, while she was still in the nursery. Whenever I would try to encourage her to drink from a bottle her breathing rate would immediately increase, she'd tire very quickly and then fall asleep barely drinking anything. As soon as we'd make any progress Fatima would get sick, be admitted into hospital and by the time she recovered she had forgotten her skills and we would have to start all over again. By 7 months she achieved a major milestone, she put the bottle to her mouth for the first time and from then on, she very slowly began to improve.
When Fatima was 11 months old she was diagnosed with severe failure to thrive weighing at a teeny tiny 4.65kg, not gaining any weight in over 4 months. By 12 months Fatima had the PEG inserted and since then her oral skills have improved so much, she was able to drink 3 bottles of 100mL orally during the day and the rest of her feeds were given to her via the tube overnight. Fatima is now 2 years and 4 months old and although she is still a failure to thrive baby she has made steady gains and now weighs 9kg.Fatima has challenged me in many ways and has taught me so many things and for that I am so grateful.
Story contributed by Reema; January 2019
Photo credit: 123 Smile Photography
You can follow their journey on Facebook: Baby Fatima- My Prader Willi Angel
Helen's Story
For Nurse Next Door client Helen, an award-winning teddy bear maker, a feeding tube has meant she can fulfil her greatest wish, to remain independent, in her own home, surrounded by her favourite teddies. For Helen, dysphagia, or difficulty swallowing, meant a feeding tube was the best way to help manage her nutritional needs to maintain her optimal health.
Before her gastronomy tube, Helen’s dysphagia was creating concerns around her nutritional intake and weight loss. She managed her PEG tube at home for some time until there were some complications which lead to a hospital admission and potential extended stay to receive 24/7 nursing care. At this time with a strong desire to return home and live independently she and her family engaged the help of the Nurse Next Door care team. to manage her PEG tube, stoma site, medications and feeds at home. Helen continues to complete two of her feeds herself whilst her care team are now on hand every day for the other three feeds, providing assistance with medication administration, and stoma care as well.
As with all home care clients, tube feeding doesn’t impact the time of day you can eat. Helen takes all her nutrition via a feeding tube – five PEG feeds per day, as well as her vital medication. Like anyone, she enjoys breakfast, morning tea, lunch, afternoon tea and dinner and she decides what times her feeds are to suit her personal preferences and routines. In terms of what she’s consuming, and keep in mind it will be different for everyone, Helen and her care team decided on Fortisip – a ready-to-drink, high energy, high protein, vitamin and mineral rich oral supplement that contains 300kcal and 18g protein per 125ml bottle. Basically a nutritional supplement designed for high impact in a small volume. She then supplements her tube feeds with foods that are easy to consume and allow her to enjoy the flavours, tastes and sensations of eating. Helen’s favourite is chocolate mousse. Her carers help her to prepare, cook and blend her food for the week and accompany her on her weekly grocery shop. Having oral feeds when you have a PEG is not uncommon, but of course, as with all people requiring a feeding tube, any food Helen takes orally is done so with medical approval, to ensure her health is a priority at all times.For Helen and her family, the choice has made all the difference in her ability to live independently at home. She and her care team have a plan in place should she need hospital attention but with management of her nutrition and her other care needs in hand, Helen is happy at home, surrounded by family, friends, and of course, all those teddies.
Thank you to Nurse Next Door and Helen for contributing this story, February 2020. You can read the blog post on Nurse Next Door website here.
Thank you to Nurse Next Door and Helen for contributing this story, February 2020. You can read the blog post on Nurse Next Door website here.
AnaVia's Story
I’m a G-Tube Baby!!
AnaVia was born with a diagnosis of trisomy 13. She had several complications during the month she spent in the NICU at Sunrise Hospital. She was unable to take formula so it was necessary to provide her breast milk daily which was provided through a feeding tube; she couldn’t feed from a bottle due to her becoming extremely tired in a short period of time. AnaVia was also diagnosed with Gastroesophageal reflux disease also known as GERD. She had to work with a speech therapist because she was unable to master the suck and swallow method. To make matters worse after being off of the breathing machine for just a couple of days she developed an E. coli infection which caused her to become reliant on the breathing machine and feeding tube once again. As she still continued to struggle with bottle feedings it was imperative for us to make the decision to have a G-Tube inserted in order for us to bring AnaVia home. Devastated with this decision, the staff was wonderful in educating us on the possible risks we could face if we were to be discharged without considering the G-tube procedure.
AnaVia is almost two now, and since leaving the NICU she has continued to maintain a healthy weight gain dispute her inability to take everything by mouth. This would not be possible had we not decided to make AnaVia a G-Tube baby.
Story contributed by Tashana; February 2020
Story contributed by Tashana; February 2020
Karter's Story
My son Karter was born in April 2018 at a healthy weight of 8lb 6oz (nearly 4kg). Karter was born with severe tongue and upper lip ties which were corrected at 4 weeks old. Karter was exclusively breastfed to begin with when we started running into troubles with him, we noticed he became irritable whilst feeding, wouldn't be interested and spent most of our breastfeeding journey latching and delatching on repeat.
Fast forward to 11 weeks of age, myself and Karter’s dad (Liam) noticed something wasn't quite right. Karter was barely putting on weight and even though he was always a baby who vomited it became more regular and could only be described as what looked like curdled milk, then the diarrhea started. Karter became lethargic, never interested in feeding and would be content to actually not feed at all, never cried and when he did, the sound was blood curdling. We tried bottles after bottles, formula after formula as the stresses took over, we noticed Karter tired easily whilst drinking and took almost NIL by bottle every time which then turned into bottle refusal all together. We then saw a paediatrician who after a week of following his weight admitted us under his care to undergo a wide range of tests after a 500gm weight loss within a week.
To this day Karter has thankfully been Nasogastric Tube free for about 3 months which has still been rather stressful and frustrating, and we still don’t have answers as to what was/is wrong, but he is a little pocket rocket, and nothing gets in his way.
Story contributed by Emma; November 2018
Story contributed by Emma; November 2018
Conor's Story
This is our boy Conor he is 4 in April and has had a feeding tube since 15 months. NG tube for 2 years which became a GJ in August 2017.
Perfectly healthy until 15 months then one day randomly started vomiting up to 10 times a day and we were in hospital for 5 weeks. 2.5 years and many tests later we're still no closer to a diagnosis.
All we know is that his gastrointestinal tract has delayed motility and consequently, he has lost all his oral eating skills and has forgotten how to chew and swallow food.Other than that, he's a healthy beautiful chatty kid and we look forward to him starting kindy this year!
Story contributed by Lisa; January 2018
Story contributed by Lisa; January 2018
Imogen's Story
This is my Tubie Imogen, born January 2017. She started struggling with feeding from birth and was rapidly losing weight. When she was exactly 3 weeks old her NG tube went in. The doctors told me it would only be temporary, just until her feeding improved then it would come out. Well her feeding only got worse and by the time she was 12 weeks old, had stopped feeding orally completely. She continued with the NG until just before she was 8 months old and that's when she had her first gastrostomy for a PEG tube. She had that first PEG for 2 weeks then it dislodged so had emergency surgery for a second PEG. After a week we went for our follow up appointment with the surgeon and she noticed the PEG was moving and being pushed out by her body, especially when she vomited which is multiple times a day. So, the surgeon made the decision to do emergency surgery again to change the PEG to a button as she thought it might hold better in the stomach, she said it was only a matter of time before the PEG dislodged again. The next day Imogen had her third surgery to place her button and so far there's been no complications with the button (apart from some persistent granulation tissue). Imogen's had many diagnoses throughout her first year, but we still don't have all the answers.
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In April 2018, we had Imogen’s appointment with the geneticist to discuss the results from her microarray. She has a microdeletion on 17p12 and was diagnosed with a rare nerve disorder, Hereditary Neuropathy with liability to Pressure Palsies (HNPP). I had a microarray done myself and I have the same deletion and received the same diagnosis. It’s funny, I’ve had the symptoms for probably about 15 years but just was never diagnosed until now! I also had my son tested (Imogen’s brother Orlando) and he too shares the same deletion and nerve disorder. However this deletion does not explain any of Imogen’s other diagnoses, especially her issues with her digestive system. So far, she has been diagnosed with gastroparesis, severe reflux, dysphagia, severe oral aversion, dysmotility, global developmental delay, sensory processing disorder (we’re most likely looking at an ASD diagnosis in the future too) and now her nerve disorder and chromosome deletion. She has had further genetic testing done on a few different chromosomes that could explain some of these other conditions, however the results have all come back negative. She sees the geneticist again early 2019 when we will commence the process for whole exome sequencing.
Imogen needs more surgery for tonsils and adenoids removal (this will be her fifth surgery) and she will also be scoped again while she’s under GA to test again for an EGID since that hasn’t completely been ruled out yet. She’s still 100% tube fed but will occasionally nibble on a Twistie if she’s not feeling too nauseous. She is struggling quite regularly with her GTube and her gastroenterologist has already warned me that we may be looking at a JTube sooner rather than later, unfortunately.
In terms of her development, she’s hit so many milestones this year! She’s started walking, she can say about 10 words and I’ve started teaching her keyword signing which has helped with her communication tremendously. We are looking forward to what the next year will bring!! Story contributed by Melissa; November 2018
Imogen needs more surgery for tonsils and adenoids removal (this will be her fifth surgery) and she will also be scoped again while she’s under GA to test again for an EGID since that hasn’t completely been ruled out yet. She’s still 100% tube fed but will occasionally nibble on a Twistie if she’s not feeling too nauseous. She is struggling quite regularly with her GTube and her gastroenterologist has already warned me that we may be looking at a JTube sooner rather than later, unfortunately.
In terms of her development, she’s hit so many milestones this year! She’s started walking, she can say about 10 words and I’ve started teaching her keyword signing which has helped with her communication tremendously. We are looking forward to what the next year will bring!! Story contributed by Melissa; November 2018
Shaz's Story
My name is Shaz.I got the flu when I was 11 and a half years old.The virus damaged my heart. Cardiomyopathy is the easiest to say.Then when I was 19 years old I had a horse accident and I'm now a quadriplegic.I had my seventh stroke in May 2012.I lost the ability to swallow and ended up with a nasal gastric tube.I had it for 22 months. Then in April 2014 I had a PEG put in and then April 2015 a mic-key button. Much better yippie.Then June 2018 I had to change my mic-key button to a GJ button because of complications from my surgery of having my bladder removed and part of my bowel. I have an urostomy now.My weight plummeted so I am now fed in my jejunum and my G port is my medication and extra water.I’m not upset having to be tube fed. It is my life line.All of us adults and children we are warriors and survivors.
Story contributed by Shaz; November 2018
Story contributed by Shaz; November 2018
