On this page is a collection of #MyTubie stories. We are also sharing a selection across our social media pages for Feeding Tube Awareness Week and invite you to visit us on Facebook, Instagram, Twitter and LinkedIn to share these stories. Sharing stories is so important to help connect us, help show the impact and help the community to understand more about tube feeding.
We thank everyone who has shared their story here to help raise important awareness. If you'd like to share your tube feeding story, please contact us.
Talakai's Story
Talakai has had his nasogastric (NG) tube since he was 8 months old. The NG tube is used for all his water, formula and medications. Talakai has his NG tube because he aspirates on all fluids, which means it would all go down to his lungs when swallowing, which is very dangerous. At this stage there is no real answer as to why this is happening but he has had two surgeries so far which they hope will eventually help the issue. The surgeries were for repair of Laryngeal cleft that he was diagnosed with, Talakai was also diagnosed with Laryngomalacia at birth. Having an NG tube helps keep Talakai safe and out of hospital.
Story contributed by Sammie; February 2024
Bodhi's Story
Bodhi has had a couple of hospital admissions due to viruses including pneumonia. Being "failure to thrive" he could not afford to lose the precious grams of weight we worked so hard for him to gain. Bodhi was NGT (nasogastric tube) fed on each admission to make sure he didn't lose too many calories as he refused oral intake, he also needed rapid rehydration too. He liked to pull the tube out and needed mittens in the end as getting the tube in was a traumatic experience for him. Still I’m grateful that the NGT is an option for our littlies.
Story contributed by Christine; February 2024
Ezra's Story
My son was diagnosed with eosinophilic oesophagitis (EoE) at 10 months of age. Prior to the diagnosis he would refuse to feed and had poor weight gain. He was diagnosed with failure to thrive at 8 weeks of age. Each time he was unwell he ended up with a NGT (Nasogastric Tube). He had a hospital admission and a NGT placed to increase his weight after being stuck at the same weight for months. Forever grateful for the healthcare we have.
Story contributed by Stacey; January 2024
Sebastian’s Story
My son Sebastian had a nasogastric tube put in following 6 months of poor weight gain due to vomiting from a cow’s milk protein allergy. The nasogastric tube helped him to put more weight on and start hitting important milestones for his development. We are so grateful for the tube - it gave us our healthy and happy baby back!
Story contributed by Kristen; January 2024
Story contributed by Kristen; January 2024
Kate's Story
I'm Kate, a 22 year old from Melbourne, Australia. My journey with feeding tubes began back at the start of 2020. Many people associate 2020 as the beginning of COVID but for myself and my family it was the beginning of my new normal. Since then I've had over 7 NJT (Nasojejunal Tube) and 1 NGT (Nasogastric Tube). Having been diagnosed with Superior Mesenteric Artery Syndrome (SMAS), Functional Gut Syndrome, Complex Regional Pain Syndrome Type II and Gastroparesis. I feel incredibly lucky to be as of current tube free and I hope to continue to be a voice in supporting those going through similar experiences.
You can follow Kate’s pages on social media: Facebook: Ladies Crusin' ClassicsInstagram: @ladiescruisinclassicsTikTok: @thechickinthemorrie
Story contributed by Kate; January 2024
Juliette's Story
After living a relatively healthy life up until this point, I had a series of near-death experiences at the end of 2020 that resulted in the loss of most of my stomach and small bowel. On 9 November 2020, I left work sending my colleagues a message over Teams, cheerfully and confidently exclaiming “See you all tomorrow!”. Overnight I went from a busy mother of 5, working full time as a public servant and undertaking a PhD to being flown by chopper to Brisbane for life-saving surgery. My family was told to say goodbye as I was loaded onto the chopper in an induced coma, and that in all likelihood, I would not survive the catastrophic damage to my internal organs caused by a twisted bowel and subsequent ischemia. Clearly, because you are reading my account in my own words, I survived! Thanks to modern medicine and a skilled surgeon who refused to let me die, I am here to tell the tale.
After enduring four open abdominal bowel resection surgeries and a partial gastrectomy, I spent six months in hospital fighting for my life. My hospital stay was punctuated by complication after complication – sepsis, delirium, pulmonary embolisms, obstructions, ileus, adverse reactions to medications, a high-output enterocutaneous fistula, stoma bag and many other unpleasant experiences. I was placed on Total Parenteral Nutrition (TPN) for five months to keep my body nourished while it continued to heal from the trauma. This was a particularly difficult time for me and my relationship with food and nutrition.
I have been left with a hypoxic brain injury from the efforts made to save my life, and I live with significant gastrointestinal issues, including Short Bowel Syndrome – intestinal failure (SBS-IF), a sub-acute small bowel obstruction, and issues with malabsorption of important nutrients like potassium. I have also developed anorexia nervosa as a result of the psychological fall-out of these experiences on my relationship with food and nutrition.
Once I was weaned from TPN and discharged from hospital, I went home to try to find a way to reclaim my life and build a new relationship with food to the extent my altered anatomy would allow. Many things were tried as I worked closely with a dietitian, and after a time it was decided that I would try a nasogastric tube to provide a low rate of tube feed on a continuous basis.
Despite feeling initially very self-conscious wearing an ng tube to work, the relief I felt at being able to meet my nutritional needs without significant pain and nausea was life changing. My family, friends and colleagues could not have been more supportive. I wore different patterned tapes to secure my ng tube to my face, to personalise the experience a bit and make it less ‘medical’ and my colleagues would always look forward to seeing which one I would wear each day to work. As a result of the tube, I had fewer emergency presentations for low potassium, and fewer presentations for small bowel obstruction and pain. The tube enabled my guts to absorb small amounts of nutrients over time and ensured that the tube feeding formula could travel past the stricture in my bowel and reduce the incidence of obstructions. After a couple of months it was decided I would have open abdominal surgery to have a gastrostomy tube (Mic Key button) placed. I now live with a Mic Key button (g-tube) and I am able to use it for continuous nutrition, as well as managing obstructions by venting/draining as they occur. This means far fewer nights in hospital, and a chance to embrace life more fully. It has taken some getting used to, and hasn’t all been smooth sailing, but I am truly grateful for my feeding tube.
Story contributed by Juliette; February 2023
Story contributed by Juliette; February 2023
Angus's Story
This is Angus, AKA Gussy. He was born 10 weeks early on the 14th of November 2020 due to a placenta abruption and foetal 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 difficulties breastfeeding but the doctors 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 breastfeed. 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 stopped 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). From July 2021 he had a PEG placed and fundoplication that nearly killed him and he ended up in ICU on ventilation fighting for his life. Then he got an infection in it that made him really sick. Then in October 2021, his PEG was changed to a PEJ while he was awake. He has been diagnosed with Cerebral Palsy Bilateral, fatigable clonus, Spasticity and Dystonia (dyskinesia) and over ten other medical/disability conditions.
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 breastfeed. 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 stopped 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). From July 2021 he had a PEG placed and fundoplication that nearly killed him and he ended up in ICU on ventilation fighting for his life. Then he got an infection in it that made him really sick. Then in October 2021, his PEG was changed to a PEJ while he was awake. He has been diagnosed with Cerebral Palsy Bilateral, fatigable clonus, Spasticity and Dystonia (dyskinesia) and over ten other medical/disability conditions.
Our tubie road has been an uphill battle 90 percent of the time and it does restrict us doing a lot of things plus we are constantly wondering if we are doing everything right, making sure Gus is up right so he doesn’t choke. When we had Angus l didn’t think this would be our life and it is hard most of the time but l wouldn't change it. He is a beautiful and cheeky now 2 year old that is adored by his 4 other siblings and family. Our life is full on with having our eldest son with Autism and many medical diagnosis and our middle son having a Illemosty bag plus everything that is happening with our two daughters.
You can follow their journey on Facebook: Watching Angus Grow Up
Story contributed by Leah; February 2023
Tayarra's Story
Having any medical device comes with its sets of challenges and having a feeding tube is no exception. There are many different types of feeding tubes. Some are typically used for short term, but can be used for the long term until an appropriate arrangement can be made, and some are more invasive and require surgery. Feeding tube names are based on how they are placed and where they go into. For example:• NG (nasogastric - a thin tube that goes into your nose, down your throat, into your stomach) • OG (orogastric - a thin tube that goes through your mouth, straight down your throat, to your stomach) • NJ (nasojejunal - a thin tube that goes through your nose, down your throat, to your small intestine) • JEJ (jejunostomy - a tube that you may get if you have had surgery and it goes down to your small intestines) • PEJ (percutaneous endoscopic jejunostomy - a tube that your doctor does endoscopic that shows them where to place your tube through your small intestines by making a small hole on your stomach that will be called a stoma and placing the tube through that) • PEG (percutaneous endoscopic gastrostomy – a PEG tube that goes through your stomach through an opening called a stoma) • RIG (radiologically inserted gastrostomy – placed under X-ray guidance, directly into your stomach, through a small opening called a stoma)
Some people can be 100% dependent on their tube, other people can be 50%, or even lower than that. But know that if you see someone eating or drinking orally, while having a feeding tube, it’s because they are ALLOWED. Just, believe them. ❤
I started my feeding tube journey December 2019. There’s so much that I’ve learnt in this timeframe. There are some things that irritate me to this day and that is when people are making remarks out loud and you hear that they think you have the tube because you have a swallowing problem or/and anorexia. The thing is that not everyone with a feeding tube has any of these problems. I have it because I have severe gastroparesis, neuromyelitis optica (NMO) and multiple sclerosis (MS). Before I was diagnosed, I had so many people tell me I was anorexic. I used to tell a lot of doctors, “I don’t have an eating disorder. Every time I eat and drink, I get sick.” 🤷🏼♀
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 and updated February 2023
Lincoln’s Story
Feeding tubes have been a huge part of our lives, from my son at 2 weeks old to now my son at 3.5yrs old. We have spent a good chunk of his life with a feeding tube. Although it can be difficult, it has allowed us to travel Australia. In December 2021, we sold our house, bought a caravan and headed west! We crossed the Nullarbor and started exploring the beautiful country of Western Australia.
After 4 months into our trip our son Lincoln needed to have his tube placed again. After situating in Perth for 3 months it was finally time to head north. We set off, and had an amazing support network as we went. We had paediatricians and specialists supporting our travels and the incredible tubie community helped us with supplies. We were very grateful. We explored the coast, we saw natural wonders, lived off the grid. We snorkelled, watched whales, dolphins and just were in complete awe that this was our lives.
It wasn’t always smooth sailing, but with the gear we had we could really make sure we got help before it became dangerous. Lincoln suffers from low immunoglobulins so is very susceptible to infection. We have had to check into a few hospitals for treatment, but had the right paperwork, reports and doctors’ information to make it smooth and seamless (mostly).
Lincoln has thrived from travelling and is so much more confident. He loves making friends wherever we go, and hike Gorges well beyond most 3yr old’s. We have seen and done so much, and all because we had his tube to keep him healthy and well. We are so very grateful to the incredible little tubie that gave us the opportunity to explore this beautiful country. We have been swimming in some of the most spectacular lakes and waterholes. We’ve seen some of the most incredible Australian landscapes that takes your breath away.
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After 13 months travel, we have made it halfway around the country. We plan to work in Darwin during the wet season, and then head to Cape York, touching the furthest most tip of the mainland of Australia. Something we have dreamed of for years.
As we travel, we have met the most incredible families. When we left, I wanted to make sure we still connected with families and we gave other tubie families the opportunity to capture moment and memories to last a lifetime. I had always wanted to start a photography business, so this was perfect. I aim to capture tubies all over Australia, share their story and remind them to be proud of their tube. To show others they’re not alone. To share the life that come from feeding tubes. It’s not all sad and bad. Its lifesaving, and life giving. We sure wouldn’t have been able to travel if it wasn’t for Lincoln’s tube.
We still make beautiful, printed tapes for feeding tubes, something that gives back choice to those faced with needing a tube. We have an incredible family back in South Australia that does this while we travel. She is a mumma to two beautiful kiddies, one whom has had a feeding tube for many years. So we know the importance of what these tapes and gear mean to other medical families.
Find out more about The Travelling Tubie Project’s nasogastric and oxygen tapes here. You can follow their travels on Facebook: The Travelling Tubie Project and Instagram: the.travelling.tubie.project Story contributed by Chloe; February 2023
Find out more about The Travelling Tubie Project’s nasogastric and oxygen tapes here. You can follow their travels on Facebook: The Travelling Tubie Project and Instagram: the.travelling.tubie.project Story contributed by Chloe; February 2023
Mateo's Story
Mateo is 17 months old (15.5 months corrected). We are from Victoria! Mateo was born premature at 34 week gestation at a tiny 4 pound 1803g. Mateo spent the first 5 weeks learning to feed supported by a NGT (nasogastric tube) in NICU (neonatal intensive care unit) and SCN (special care nursery). With months of persistence at home and with his speech team, Mateo never learnt the development to feed in volumes greater than 50ml. Mateo's little body would reject anything he would consume on a regular basis. Mateo developed many other conditions during his time in and out of hospitals in the early months including ASD (atrial septal defect) of the heart, central sleep apnea, Laryngomalacia and more. Mateo’s low muscle tone made it hard for him to be able to feed and support his own body. At 7 months Mateo's little bottle rejected his NGT bolus feed, and therefore he was placed on a pump, by 10 months. At that point Mateo was finally able to hold a feed longer than 2 hours and we had our very first 3 hour feed interval.
At 11 months of age, Mateo had surgery to have a PEG (percutaneous endoscopic gastrostomy) inserted, and along with that came huge milestone developments in many areas. Now at 17 months he is still 50% supported by his PEG and 50% on a normal solid diet.
Mateo has gained a fabulous 6kg in his life and he loves his food.
You can follow their journey on Instagram: Pocket.Memories
Story contributed by Brittany; February 2023
Jess's Story (Parent Advocate)
I have two children with Mic-Key button feeding tubes, and both have been tube fed since birth which means feeding tubes have been a part of my life for over 9 years! I have cared for my children through NG (nasogastric) tubes, an NJ (nasojejunal) tube and gastrostomy buttons. Both children will likely have their tubes for a long time, due to metabolic disorders, feeding difficulties and eosinophilic oesophagitis (EoE). Working as a Psychologist alongside being a tubie mum has led me to form a special interest in carer mental health. I am passionate about supporting families of tube fed loved ones as a parent advocate.
I run a local tubie support group (Macarthur Tube Feeding Families) with another tubie mum and we have met so many incredible families – in our group, tube feeding is the norm. I am also involved with SUCCEED Child Feeding Alliance and embrace their value of ‘supporting children with feeding tubes to thrive’. I’m grateful for Feeding Tube Awareness Week (FTAW) and to ausEE for creating such solid foundations for individuals and families who tube feed to be able to learn about, embrace and thrive with feeding tubes.
During last year’s FTAW 2022 Virtual Education Program, Jess provided a presentation sharing tips, information and resources on how to look after yourself as a tubie parent/carer. You can watch the video recording here.
Story contributed by Jess; February 2023
Lewis’s Story
In 2011, Sarah’s son Lewis was 3 years old when he had a spontaneous stroke that left him with right sided paralysis (hemiplegia), a diagnosis of cerebral palsy, epilepsy, ADHD and was unable to safely chew or swallow.
A CT scan revealed a massive cerebral aneurysm in the basal ganglia area of his brain. He suffered a massive stroke with the bleed the size of a hockey ball, his family was told to say goodbye. The doctors advised that if for some incredible reason he did survive, he would never walk, talk or eat ever again. He would be wheelchair bound, need a communication device and be PEG (percutaneous endoscopic gastrostomy) fed for the rest of his life. The doctors didn't know Lewis, nor mum Sarah’s tenacity, strength and resilience.
Lewis is now 14 and in grade 9 at mainstream school with his identical twin brother Cohan. Whilst he has partially recovered (with a lot of very hard work), he still has a lot of paralysis as a result of the stroke. With intense therapies such as physio, OT, and hydro, today he walks, runs and swims. He wears an AFO (Ankle-Foot Orthosis), his right hand does not work and he has regained most of his speech with all the help from his amazing speech pathologists.
Lewis’s eating was majorly affected by the stroke. He lost his ability to safely chew and swallow and initially was on an NG tube (nasogastric tube). He had periods of time being on and off the NG, however, was often hospitalised for malnutrition and rehydration when he was off it, and the NG was always reinserted. After years of back and forth with the NG, doctors placed Lewis with a permanent PEG, he was then 9 years old.
Mum Sarah, wasn’t comfortable with the high sugared artificial chemically enhanced hospital formulas, so Lewis started on a wholefood blended diet only a few days after having his PEG surgery.
The family travelled a lot and it was frustrating not being able to find commercially safe enteral blended feeds that did not have to be refrigerated. Blending for school every day was difficult, it always needed to be fresh and temperature controlled to avoid risk of bacteria. Sarah decided to set out to create a shelf stable natural blended meal not only for Lewis to consume, but also for the thousands of other families across Australia that enjoy a healthy wholefood diet would have options too.
From this, Wholesome Blends was created. Wholesome Blends is Australia's first shelf stable real food option for tube fed children and adults. There are 4 flavours of nutritious real food with no added nasties, it is dairy, soy, egg and nut free and allows families freedom to throw it in a bag and go. Sarah, Lewis and Cohan started Wholesome Blends to give families a choice about what their tubies consumed. Sarah educates families and save blending practices at home, and is an advocate for NDIS support for enteral feeding.
Lewis, now 14, loves to show his friends how he can have a whole dinner while not ever opening his mouth. His friends accept seeing his tube feeding when they are on social situations and are all very supportive and protective of Lewis. Tube feeding has saved Lewis’s life; it’s never hindered it nor made him different. He is thriving today because of the PEG, giving him freedoms that he was once told were out of his reach.
Story contributed by Sarah; February 2023
Liv's Story
Liv is turning 8 during Feeding Tube Awareness Week! She is a beautiful girl that loves nothing more than to dance, play with her sister and friends, and watch scary movies or go on a ghost tour.
Liv started her feeding tube journey as she was born at 35 weeks, and came home at 5 days old gravity fed, I thought at 13 days when it was removed that would be the end of our journey, however Liv had the NG (nasogastric tube) for short times throughout the first 4 years until it was decided just before Christmas when she was 4 that she would need it to maintain her sugar levels and get a bit of normality in her life back.
Liv has since been diagnosed with ARFID (Avoidant/Restrictive Food Intake Disorder), ketotic hypoglycaemia, FTT (failure to thrive) as well as an array of other conditions. she had a NG tube for 3 years before we swapped to a PEG (percutaneous endoscopic gastrostomy) in November last year. She has 4 bolus gravity feeds a day which provides her daily nutrition, and a pure carbohydrate at night to maintain sugars. Without the tube Liv has just not woken up before as her sugars were so dangerously low. On bad days we are able to use the tube to keep Liv out of hospital which has meant we can have a better quality of life!
Liv doesn’t allow her tube to define her. She dances competitively, attends mainstream schooling, she's swam with sea turtles in the great barrier reef, and been on rollercoasters in the Gold Coast.
Story contributed by Kate; February 2023
Hunter and Rory
Hunter's Story
Hunter is 16 years of age (nearly 17). When he was 15 years old, he first had a nasogastric tube placed and then was on the waiting list for a PEG (percutaneous endoscopic gastrostomy), which he now has. He has several disabilities; autism, epilepsy, developmental delay, two chromosomal abnormalities, ehlers-danlos syndrome and eosinophilic oesophagitis (EoE). Over the last few years Hunter lost over 25kg in weight. Dietitians and specialists tried all they could think of but food gave him constant pain. Over two years ago Hunter had a seizure which lasted 42 minutes and resulted in brain trauma. Since then he barely touched any food and lost some sense of taste and smell due to the brain trauma. Because of this, he had the nasogastric tube put in. Over a year 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 was not happy having a nasogastric tube but his PEG surgery was put off for several months due to COVID. It was good however that with the tube he was getting nutrition and gaining weight. Specialists and dietitians were hoping Hunter would start to eat when he got the PEG but that hasn't been the case. He also dislikes being tube fed and has constant issues. Having the PEG has not enticed him to eat at all, but it does give him the nutrition he needs. His numerous disabilities are increasingly getting worse as he gets older.
His best mate Rory (baby in the pic) has cerebral palsy. They have a special bond because of the feeding tube. 😊
Story contributed by Amanda; January 2023
Rory's Story
Rory is 2.5 years old. He has had a nasogastric tube since birth and is on the waiting list for a gastrostomy/jejunostomy. He has several disabilities; Spastic quadriplegic cerebral palsy, refractory epilepsy, global developmental delay, cortical vision impairment, hearing loss, gastroparesis and severe brain injury. The impact of Rory’s severe brain injury has resulted in an inability for him to safely swallow. Coupled with his gastroparesis diagnosis, Rory has significant difficulties in maintaining his nutrition status. Rory has struggled since birth to grow at a healthy rate and is delayed on all growth charts as a result. Each time Rory becomes unwell (which is frequently), he has a regression with his nutritional status resulting in weight loss, increased vomiting and needing to reduce the rate of his feeds which are delivered by a feeding pump. This means Rory must have prescribed multivitamin powdered formula to ensure he is meeting his daily nutritional needs and doesn’t become malnourished. Due to Rory’s Cerebral Palsy, he also has significant issues with internal and external muscle spasms and excess secretions. This makes it difficult for Rory to tolerate his feeds (even through a tube). He is frequently in pain during feeds and spends over 10 hours per day attached to his feeding pump to ensure he receives sufficient nutrition at a slower rate to minimise the pain experienced.
Rory has an older sister who attended school with Hunter (friend in pic with Rory). From the moment Rory and Hunter met they had an instant connection. Hunter is very special to Rory and the two enjoy spending time together. Rory loves to pull out his nasogastric tube, and was keen to show Hunter how he too could do this (before he received his PEG). 😊
You can follow their journey on Facebook: Rory's Journey
Story contributed by Karla; January 2023
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
