Over the years, we have established many fruitful relationships and partnerships with other institutions and associations, caring about families with children with feeding tubes, children with eating and feeding disorders or with certain related diagnoses. Thus we have created a non-exhaustive list of parent and professional associations, health care providers and other valuable links in the field.
Children’s heart association When a child is diagnosed with a heart problem it is a difficult time for the whole family. The Children’s Heart Association would like to help.
The scottish association for children with heart disorders The web site is packed full of interesting and useful information about our charity that supports children and young adults with congenital heart disorders, and the families.
The Children’s Heart Foundation The Children’s Heart Foundation was founded in 1996 and is the country’s leading organization solely dedicated to funding congenital heart defect (CHD) research. Our mission is to fund the most promising research to advance the diagnosis, treatment, and prevention of CHDs.
Little Miracles Little Miracles UK supports the families of premature and sick babies throughout the UK. Our mission is to provide support to all parents on neonatal units throughout the UK which can include basic toiletries and information about the various types of support available. We provide 24hr online support via our website forum, social media and regional support groups.
Other associations and initiatives
Health care providers & crowdfunding
Mitz and his parents are from the Netherlands. Due to his weight loss and bottle refusal that occurred a few months after his birth, Mitz’s parents started feeding him while he was asleep (dream feeding). He also suffered from reflux. Despite many efforts, he did not succeed in becoming an independent eater. The unusual feeding situation stressed his parents a lot, and when Mitz was of fifteen months old, his parents decided to participate in our Eating School. Within two weeks, Mitz learned to eat and drink independently and the dream feeding could be stopped entirely. Today, Mitz enjoys communal meals with his parents and other children and has increased his eating and drinking autonomy.
Tube free!Meet Ruairi!
Ruairi was born prematurely and suffers from cyclical vomiting syndrome. Due to failure to thrive, he had a nasogastric feeding tube placed in February 2018. A few months later, G tube surgery was performed,followed by a PEG feeding tube few months after that. Although all medical issues stabilized, and despite many efforts to support him, he did not succeed in transitioning to oral nutrition. His parents decided to participate in one of our Eating Schools in summer 2019. Right from the start, Ruairi showed a great motivation to learn to eat and increased his oral intake steadily. Within only two weeks, he learned to sustain himself fully orally and has been enjoying his new skills ever since.
Tube free!Meet Marie!
Marie and her family come from Germany. Marie was born much too early. As a result of her extreme prematurity and her complex medical history, she was given a nasogastric tube immediately after birth for her nutritional needs. Because of the long-term enteral nutrition, Marie developed tube dependency, accompanied by severe vomiting, food refusal, and a noticeable oral aversion. Once Marie was medically stable, her parents wanted to help her have a tube-free life. So, in August of 2018, the entire family traveled to Graz to participate in an Eating School. It was a good decision; shortly afterward, Marie was weaned from her tube and has been living tube-free ever since.
Tube free!Meet Dorian!
Dorian, who is from France, and his twin brother were born in the 29th week of pregnancy. Dorian weighed only slightly more than 600 grams! He was fed via feeding tube since the time of his birth. At first, he had a nasogastric tube; eventually, a PEG-tube was laid and a fundoplication performed. Dorian suffered greatly from the tube feeding and was often extremely nauseous. The situation was burdensome for the whole family, and they decided to travel as a group to Graz in September, 2018 to participate in an Eating School. At this point, Dorian was nearly four years old.
In the Eating School, he appeared as a playful, curious little guy. He showed interest in food and developed a great fondness for chocolate cake! At the beginning of October, Dorian could already completely stop his tube feedings. Several months after the therapy in Graz, Dorian is successfully eating age appropriate foods – and, with pleasure.
Tube free!Meet Leo!
Leo is from Germany. He was born slightly early (in the 36th week of pregnancy) with cardiopulmonary anomalies. Because of the severity of his underlying medical conditions, he was fed via a nasogastric tube from the time of his birth. He had to have several surgeries and required many hospitalizations. When Leo was eleven months old, an attempt to wean him from his tube was made at a tube weaning program in Germany that lasted several weeks. The much anticipated success, however, was not forthcoming – he did not achieve the transition to oral nutrition. The expectation was that it would take nearly another entire year for him to reach that goal. The family decided to participate in a NoTube Eating School in Graz. Leo made such good progress that the tube could already be removed on day nine of the program. From that time on, Leo has fed himself fully orally. He participates enthusiastically in family mealtimes. The entire family is pleased with the quality of life that they have gained.
Tube free!Meet Camille!
Camille and her parents live in Belgium. A few months after she was born, Camille suffered from a severe lung infection. She was given a nasogastric tube to ensure optimal nutrition and thriving. When Camille was nine months old, her parents contacted NoTube. Camille was to be weaned off her feeding tube, because she had developed a tube dependency due to being long-term tubefed. The consequences were frequent vomiting and loss of appetite. She had also developed an oral aversion. In summer 2017, the family took part in our Netcoaching program. During the tube weaning, Camille made very good progress and the tube could be removed after only a few weeks. Camille had learned to eat. A brief episode of tube feeding became necessary due to an infection, but since the beginning of November 2017 Camille has been eating completely orally. She no longer needs a feeding tube and enjoys eating.
Tube free!Meet Hanna!
Hanna and her parents live in Italy. Because of her cleft palate, Hanna has been fed through a nasogastric tube since birth. All previous tube weaning attempts made by Hanna’s therapists had been unsuccessful, so Hanna’s family decided to participate in the Eating School in Graz. Hanna was 15 months old at the beginning of the Eating School. Right from the start, she made great progress, accepting various pureed foods and drinking formula so that she was already able to be partially weaned while still in Graz. Back at home, Hanna was fully weaned during the aftercare portion of the program. Hanna hasn’t needed her tube since the end of March, 2018 – her favorite is drinking formula.
Tube free!Meet Felix!
Felix was born with a severe esophageal atresia and therefore had to be fed since birth via a jejunal feeding tube. He underwent several surgeries with associated complications. After his medical situation stabilized, he did not succeed in the transition to oral nutrition despite many efforts. When Felix was slightly more than one year old, his family and he attended the Netcoaching program. He sustained himself fully orally within only two weeks. He takes part in communal meals and learned to enjoy eating and drinking ever since.
Tube free!Meet Wende!
Wende and her family are from the Netherlands. She was born with chromosomal aberrations and laryngomalacia. She also suffered from severe reflux. At the age of about one year, Wende received a nasogastric feeding tube due to failure to thrive. During and after drinking, she also suffered from a lot of pain. She often cried for hours. Due to long-term enteral nutrition, Wende stopped eating and drinking and developed a tube dependency resulting in excessive vomiting and oral aversion. Thus, at the age of almost three years, Wende’s parents decided to participate in the Netcoaching and to tube wean Wende. During tube weaning Wende was able to gradually increase her oral food intake. Therefore, her NG tube could be removed successfully two months after starting. Since then, Wende has been feeding herself completely orally and is making great progress in her eating development.
Tube free!Meet Lillian!
Lillian and her parents live in the US. Lillian had to be ventilated right after birth. Due to her medical condition and to help her to thrive adequately, needed to be tube fed. Although all underlying medical condition became stable she did not succeed in the transition to full oral feeding. At the age of almost five months her parents decided to participate in the Netcoaching program to tube wean Lillian from her G-tube. Right from the start she accepted small amounts of infant milk and pureed food. She increased her oral intake and only ten days after her treatment start she could be weaned off her feeding tube. Lillian has been tube free and eating orally ever since
Tube free!Meet Louis!
Louis and his family live in Germany. He was born with a genetic disease and received a nasogestric (NG-) feeding tube right after birth. He suffered from insufficient sucking and dysphagia after receiving a tracheostomy. Due to long-term tube feeding, Louis developed a tube dependency resulting in active food refusal. He vomited several times a day and showed a massive sensory and orally hypersensitivity.
In April 2017, at the age of almost 7 months, Louis parents decided to participate in the Netcoaching tube weaning process. During Netcoaching his oral aversion was gradually desensitized. He began to accept small amounts of fennel tea and was fed orally via a finger feeder. During Netcoaching the family decided on recommendation to take part additionally in our Eatingschool in Graz in June 2017. There, Louis started to increase his oral intake steadily and Louis’ tube could be pulled out one and a half weeks afterwards. Since then, Louis and his family enjoy their tube-free life.
Tube free!Meet Margarethe!
Margarethe from Germany was born with a cleft palate and was put on nasogastric tube feeding. All weaning attempts failed, so Margarethe’s parents decided to bring her, and her brother, to the Eating School in Austria. Margarethe was four months old when she arrived; she learned to drink and had her first experiences with solid food. The tube stayed in Graz. Margarethe doesn’t need it anymore!
Tube free!Meet Knox!
Knox, who lives with his parents in the USA, suffered from laryngomalacia and severe GERD during his first months of life. Along with a milk protein allergy, these conditions led to the insertion of a G-tube through which Knox has been fed ever since, causing him to completely stop oral eating. In June of 2016, his family travelled all the way to Austria to participate in one of our Eating Schools. Not only did Knox learn to eat, he loved it! In fact, he ate so well that his tube feedings ended during the course of the Eating School. Since then, Knox has been enjoying his new life!
Ilias was born with a severe heart defect, which led to the insertion of a nasogastric tube right after his birth. After successful surgeries, he didn’t succeed in the transition to oral feeding. His family got in contact with NoTube and started the Netcoaching program in September 2016. Ilias was 11 months old and took nothing orally. During the Netcoaching program, he began to drink formula, he got also interested in purees and solids. He even swallowed his medication orally! The nasogastric tube was removed for good in October 2016.
Tube free!Meet Mika!
Mika from Germany was born with a malformation syndrome. An esophageal atresia made oral feeding impossible. After successful surgery, Mika was supposed to start oral eating; unfortunately, he refused to eat and drink. Mika vomited a lot on full tube feeds, and he showed signs of oral aversion. In April 2014, at the age of 16 months, his parents signed up for the Netcoaching tube weaning program. Mika began to eat and drink; after only three weeks, all tube feeds could be stopped completely! Since then, he sustains himself fully orally. Mika is now four years old and eats just as much as his little friends in kindergarten!
Tube free!Meet Mathis!
Mathis and his parents and siblings live in the french-speaking part of Switzerland. The feeding situation of Mathis was always very difficult, after many examinations and hospitalizations, he received a nasogastric tube. Unfortunately, he developed a tube dependency, the meal times became a big struggle, Mathies cried, screamed, refused all oral feeding attempts. In summer 2016, he and his parents travelled to Graz to participate in the Eating School. Mathis left the Eating School without his feeding tube!
Myrtille and her parents live in France. She was born with a rare chromosomal aberration which influences her development. Since the age of nine months, Myrtille is fed by NG tube. Myrtille suffered a lot during tube feeding, she vomited regularly and developed a severe oral aversion. At the age of 20 months, Myrtille and her parents visited an Eating School in Graz, at this point, Myrtille accpeted no oral feeding. At the Eating School, Myrtille learned to eat with pleasure. Due to the severity of her underlying condition, Myrtille still needed partial tube feeds. She was supported by Netcoaching for several months after the Eating school to optimize the situation. In the meantime, a G tube was placed, in order to let Myrtille eat without a tube in her throat. Now Myrtille can enjoy eating, during phases when she can’t eat enough on her own (e.g. during/after seizures), she is supported in the best possible way.
Tube free!Meet Lilly!
Lilly and her family live in France. She was born with a diaphragmatic hernia and, consequently, had to be tube fed via nasogastric tube. Over the course of several months, tube feeding became more and more difficult: Lilly’s gagging increased, she avoided oral eating… At the age of 8 months, her family started the Netcoaching program and Lilly discovered joy in relating to food. She likes yogurt, fruit puree and various finger foods. After less than three weeks, her nasogastric feeding tube could be removed. Since then, Lilly has been enjoying her tube free life!
Tube free!Meet Lotta!
Lotta and her parents are from Germany. Due to her prematurity she was tube fed since birth. In February 2016, at the age of six months, her family decided to attend the Netcoaching program. In addition, they decided to participate in an Eating School in Graz to help their daughter getting finally rid of her feeding tube. Lotta made great progress, she learned to accept pureed food and liquids orally and to swallow food/drinks safely. Her tube could be removed in September 2016 once and for all! Lotta is able to sustain her nutritional needs fully orally ever since and enjoys her tube free life.
Tube free!Meet Maria!
Maria and her parents live in the Netherlands. Maria was born extremely premature, at a gestational age of 26+1 weeks. Due to her extreme immaturity, she got a nasogastric tube right after her birth. After a long time in the NICU, Maria was discharged with a feeding tube. Due to long-term enteral nutrition, Maria became tube dependent and suffered from recurrent vomiting. In order to help Maria, her parents contacted NoTube. At the age of 9 months (corrected 6 months), she participated in the Netcoaching program. Only 10 days after starting Netcoaching, Maria got her very last tube feed and has been tube free ever since.
Tube free!Meet Louise!
Louise and her parents live in France. She has been born with CHARGE syndrome and has been fed by G tube. Louise completely refused oral eating. To wean their daughter off her feeding tube, her parents signed up with NoTube. Netcoaching was commenced, but due to recurrent infections, the weaning needed to be postponed. Finally, after a tonsillectomy, Louise’s health situation stabilized! To support her in the best possible way, her family travelled to Graz to attend an Eating School in June 2016. At the age of almost 3 years, Louise learned to eat, at the end of June all tube feeds could be stopped! Since then, Louise makes great developmental progress.
Tube free!Meet Leonie!
Leonie and her parents live in Germany. Due to her complex medical history, she has been tube fed since birth. Since the age of 6 months she is tube fed via G-tube. Due to her long-term enteral nutrition, Leonie developed a tube dependency resulting specifically in an oral aversion: each time she tasted food or just smelled it,she gagged and vomited frequently. In April 2016, Leonie’s parents decided to participate in the Netcoaching program. Already two weeks after start of the coaching, she received her very last tube feed. She has been tube free ever since.
Tube free!Meet Victor!
Victor and his parents live in Germany. He was born with Pierre Robin sequence including a cleft palate, which made tube feeding obligate. After completion of therapy, Victor was allowed to eat orally but he refused. In early 2013, his family started Netcoaching and despite many difficulties and setbacks, Victor suceeded in the transition to full oral nutrition within the next months. We are very proud of him!
Tube free!Meet Marco!
Eight-year-old Marco and his parents live in Switzerland. Marco suffered from a trauma during birth, from which he recovered quite well, but his feeding tube is still in place. He has been tube fed for many years. In summer 2016, he and his parents attended one of our Eating Schools where he could be weaned successfully off his feeding tube. Now he is finally able to enjoy shared meals with his friends!
Tube free!Meet Noémie!
Little Noémie and her family live in France. She has been seriously ill right after her birth, therefore, Noémie needed to be fed through a nasogastric tube. Fortunately, Noémie recovered fully, but she never learned to eat orally. Tube feeding led to severe side effects, Noémie vomited regularly, her parents were desperate. At the age of one, Noémie has been participated in the Netcoaching program. She started to try different drinks and kinds of food and increased her oral intake steadily, so tube feeds could be stopped and the nasogastric tube has been removed! Since then, Noèmie is feeling much better, she doesn’t vomit anymore and develops well!
Tube free!Meet Len!
Len and his parents, Christin and Thomas, are from Germany. In Autumn 2015, they participated in the Netcoaching program. Len was four months old, when his parents started the weaning process. Len was born full-term. During delivery, birth complications occurred and Len needed to be reanimated. During his first four weeks of life Len was in hospital. Since birth, he was tube fed via a NG-tube. He got tube dependent very soon, resulting in oral aversion and frequent vomiting. During the Netcoaching process he re-learnt drinking and eating. Just one week after the Netcoaching program has started, his feeding tube could be removed successfully. He is able to sustain himself fully orally ever since.
Tube free!Meet Colombe!
Colombe, her parents and her sisters live in France. She was born with a genetic syndrom and cardiopathy which required two open-heart surgeries. Colombe was fed by nasogastric tube, she suffered from the tube feeding, vomited frequently. At the age of seven months, Colombe was signed up for the Netcoaching tube weaning program. Colombe started to drink from a bottle, the vomiting subsided. In September 2015, Colombe’s nasogastric tube has been removed, she is sustaining herself orally ever since.
Tube free!Meet Paula!
Paula and her parents live in France. Paula was born with Pierre Robin syndrome, which compromised her orality and breathing, therefore a Button has been placed for enteral nutrition. After stabilization of the medical situation, Paula didn’t succeed in the transition to oral feeding as she has become tube dependent. Her parents registered Paula for the Eating School in Mayenne, France, in which Paula took part at the age of 22 months. Paula learned to eat, tube feeding could even be stopped during the Eating School and her Button has been removed shortly after. Today, Paula eats age-appropriately and with joy!
Tube free!Meet Sophia!
Little Sophia and her family live in Tyrol, Austria. She was born in the 35th gestational week, suffering from an esophageal atresia. After multiple surgeries, her medical situation has been stabilized, but Sophia didn’t start to eat orally. She has developed a tube dependency and was connected to her jejunal tube 21 hours/day. Her parents decided to sign up for Netcoaching, which has been started in May 2015. Sophia got interested in food for the very first time and finally started to eat orally. She received her last tube feed mid of July 2015. Since then, she eats and drinks orally and develops beautifully.
Tube free!Meet Scarlett!
Scarlett and her parents live in the US. Scarlett was born with a severe heart defect and underwent multiple heart surgeries. Right after her birth she was diagnosed with Down’s syndrome. Due to failure to thrive, a NG tube has been placed at the age of three months. After a failed weaning trial, her parents decided to sign up for the Netcoaching program in order to help Scarlett learn to eat. Weaning has started mid of February 2016, after only a short time Scarlett started eating pureed food. At the end of February, Scarlett has been successfully weaned off her feeding tube and is sustaining herself fully orally.
Tube free!Meet Emil!
Emil is living in Sweden with his parents and
was born as a healthy and happy child. The first couple of months, he was growing excellently. At the age of 5 months his condition changed badly. View months later he was diagnosed with general fasciitis.
He got hypotonic and was in a lot of pain. He stopped eating and growing. In the beginning of 2013, Emil got a NG-tube and in February 2013, a PEG-tube was placed. He was tube fed since then. In October 2015, Emil was 4 years old, the family participated in the Eating School. Although it was a lot of work for Emil, he finally started to eat at the Eating School in Austria and got weaned successfully afterwards in the telemedical aftercare process. On December 2nd, 2015 he got his very last tube feeding and has been tube free and eating orally ever since.
Tube free!Meet Paulina!
Paulina and her twin brother were born in the 30th week of gestation. Due to failure to thrive and severe feeding problems a nasogastric tube was placed at the age of four months, a G tube was implanted surgically in February 2012. Paulina stopped eating and drinking completely, she suffered from frequent vomiting and developed a severe oral aversion. In October 2013, her family decided to enrole in the Netcoaching program. Since May 2014, she does not need any tube feeds anymore, the vomiting stopped completely, the whole family and especially Paulina’s twin brother enjoy their new family life!
Tube free!Meet Élise!
Élise and her family are from Germany. Élise was born with a rare genetic defect. Immediately after birth, there were complications. Élise suffered from respiratory distress and had to be artificially respirated. In addition, she was born with a cleft palate and fed via a nasogastric tube from birth. As a result of the long-term tube feeding, Élise developed tube dependency and along with it came a lack of desire to drink and a refusal of food. At the age of 3.5 months, Élise started the Netcoaching program. Within a few days she made great progress. Élise began to drink breast milk and her tube could be removed. Since then, she has been feeding entirely orally.
Tube free!Meet Ayram!
Little Ayram and his parents live in the french-speaking part of Switzerland. At the age of almost 4 months, Ayram received a nasogastric tube due to little oral intake and related failure to thrive. Ayram got tube dependent quite quickly. Insertion of a G tube was already planned when his mother decided to go to Austria to participate in one of NoTube’s Eating Schools. Ayram discovered the wolrd of oral eating and was the star of playpicnics! Already on the third day, Ayram removed his feeding tube himself, since then there was no need to reinsert it as Ayram eats orally and sustains his nutritional needs himself.
Tube free!Meet Lilly!
Lilly, 5 years old, and her family live in the USA.
She was born with a weight of only 765g in the 32nd gestational week.
Lilly suffered from severe reflux, which led to food refusal, at the age of nine months a G tube has peen placed through which Lilly has been fed ever since. Her mother Karen decided to sign up for the Netcoachin program and finally, in July 2015, the time had come: after 4 years on exclusive tube feeds Lilly learned to eat. Tube feeds could already be stopped in September. Lilly’s favourite foods are maccaroni and cheese as well as ice cream!
Tube free!Meet Zachary!
Two-year old Zachary and his parents live in Laval, Quebec, Canada.
He was born with a genetic disorder: Cornelia de Lange syndrome.
Many children with this kind of syndrome are tube fed, and so was Zachary since his second day of life. His family did a lot of research and finally decided to sign-up for NoTube’s Netcoaching program which started in March 2015. At this time, Zachary didn’t tolerate any food orally. During Netcoaching program, Zachary started to take interest in different kinds of food, discover them in a playful way, taste them and eventually eat larger amounts. Finally his nasogastric tube could be removed!
Tube free!Meet Viktoria!
Viktoria was born with a complicated defect of the esophagus. When she was 2.5 months old, the stomach was raised and joined to the rest of the esophagus. After this there was frequent bougienage until she was discharged from hospital aged 4.5 months; underweight and with a nasal gastric tube. She still needed a weekly bougienage, and a PEG was placed in March 2014 due to poor weight gain. She could only take small amounts of food and also suffered severely from Dumping-Syndrome. In May 2014 she had an operation for a narrowed Anastomosis. Only a week after being discharged, food entered the pleural cavity through a leak in the esophagus and she had to stay in hospital for six weeks. During bougienage in August 2014 she suffered a perforation of the esophagus and needed another six weeks in hospital. Raising the stomach further was planned for as soon as her health allowed. Oral and PEG feeding was strictly forbidden until after the next operation. She was given a Hickman Catheter and was fed through this. Four months later, in February 2015, it was finally time for the stomach to be raised again. She was to be fed temporarily through an intestinal tube, but the tube had to be removed a few days after the operation due to complications. She came through everything well and we were happy to start a normal life.
Tube free!Meet Gina!
Gina was born on June 25, 2010. She was equipped with a nasogastric tube following a spinal cord compression, which was operated in February 2011. She would not eat much and only gained a little weight. After the placing of the tube, Gina began to refuse bottle-feeding. She could not stand enteral feeding and her nasogastric tube was subsequently removed in December 2011. She then accepted bottle-feeding again but she was struggling to grow. She only ate small amounts of food. In October 2012, she was given a gastrostomy tube. The bottle-feeds were interrupted again because Gina was vomiting a lot – she could not bear this tube.
Tube free!Meet Naren!
Naren was born at 30 Weeks 4 days gestation weighing 2 lb 5 oz (IUGR and very low weight) and 14 inches. His twin sister was born weighing 3 lbs. He was in the hospital for 9 weeks and was on oxygen for around 5 weeks. He was difficult to feed but came home drinking breast milk fortified with formula. However, the feeding difficulties remained and as time progressed he would not even take the nipple into his mouth. He was in feeding therapy and we had multiple appointments with doctors to find any issues. We found no answers and eventually Naren started losing weight. At around 6 months of age Naren had a g-tube placed since he was losing weight.
Tube free!Meet Sari!
Sari and her family live in Sydney, Australia. Following a suction-assisted birth Sari showed no interest in feeding and when, after 3 days, she still wasn’t feeding, the medical team fitted a naso-gastric tube and started enteral feeding.
Investigations failed to find an underlying physical cause for her eating problems, and she was discharged home without a tube only to be re-admitted due to failure to thrive a short time afterwards, and the naso-gastric tube was re-inserted and feeds re-commenced.
When the family were told she would have to progress to a PEG tube at 6 months old, they searched the internet for an alternative solution and found NoTube.
In April 2010, using the Netcoaching approach, Sari was weaned from the tube in 14 days, and has now been tube-free for over 5 years.
Tube free!Meet Josephine!
Josephine (Josie) was a full-term, healthy baby born with tongue tie, which made it difficult for her to nurse. After having the tongue tie revision procedure, she was still unable to drink enough breastmilk to gain weight and always refused a bottle. At one month of age, she had an NG tube placed because she was still below her birth weight. At two months of age, she completely refused breastfeeding and became 100% tube dependent. Josie’s parents had a very supportive feeding team in place at home and did everything within their power to help Josie make positive associations with feeding. Unfortunately, she still refused to drink. With the blessing of their feeding team, they attempted to wean Josie with the Notube Netcoaching Program at 6 months of age. Within a day, she began drinking and experiencing hunger. However, there seemed to be too many changes at once, so Josie let her parents know she needed things to slow down. They stopped the weaning process and tried again at 8 months of age. Within days, she was taking in half of her recommended daily intake by mouth and was completely tube-free in two weeks. Over the entire course of the weaning process, she only lost about 150 grams. Six weeks after her last tube feed, Josie is gaining weight beautifully, enjoys drinking, eating and displays no signs of ever being tube-fed! Here’s what her parents had to say at the completion of the program:
Tube free!Meet Dylan!
Dylan – American. Dylan was born with Hypoplastic Left Heart Syndrome and was tube fed from birth. Dylan and his family worked with several different therapists during his life to wean the tube with no success. Later he was diagnosed with “severe oral aversion.” The pediatrician said that he would be tube dependent until 3 or 4 years of age. He vomited 5-7x daily and had plateaued for weight in the 26th percentile. He would not touch food and would cry at the sight of any spoon, bottle, sippy cup or other food. He was behind in major developmental milestones. He could not sit without support, wouldn’t crawl or try to sit up or stand up. The family turned to Notube when Dylan was 11 months old and started the Netcoaching program in April 2013. On day one of our program, the vomiting stopped and never returned. On day three, he could already sit, crawl and even tried to stand up. On the third week Dylan started to eat food. He never cried at the sight of food anymore. On the fifth week the family did the last feeding with a tube and never used it again. His G tube was removed six weeks later. When his first birthday came around all the family watched overjoyed, as he ate his cake and loved it. After 3 months of weaning, Dylan shot up to the 82nd percentile for weight. Notube took a child who was strapped to a chair for most of the day, miserable because he was constantly vomiting, who was unable to explore his world because the tube was hindering milestone achievement and totally gave him his life back. It was an amazing transformation.
Tube free!Meet Bommel!
Bommel and her family live in the Netherlands. When she was two weeks old she was hospitalized due to failure to thrive, hypotonia and respiratory problems. She was not able to sustain herself, so she got a nasogastric tube that was replaced by a gastrostomy button after a year. Bommel drank small portions from a bottle by herself until she was about 8 months old. Then she refused and was completely tube fed. During that time she did accept being fed by spoon. Drops of pureed fruit at a time. NoTube was recommended to her parents after posting a blog on being tube fed. They started Netcoaching in May 2014. Within one week of starting the program Bommel became tube free and has been ever since! After surgery in December 2014 she had difficulty starting to eat again. The NoTube Lean to Eat program helped Bommel become her old, eagerly eating self within days of starting the program. Bommel can eat everything now, fluid & pureed. Her favourite is vanilla custard!
Tube free!Meet Everett!
Everett and his parents live in the United States. Everett was hypoxic at birth. He was put on several ventilation machines throughout his stay in NICU. Doctors believe Everett’s severe oral aversion and GERDS result from the trauma of being intubated. When he was 8 months old, Everett left an intensive, inpatient feeding program with a mini g-tube. Beginning March 2015, 15-month-old Everett was enrolled into NoTube’s Netcoaching program. Almost immediately, his GERDS disappeared. After the first week in the program, Everett would only drink water. Then, he moved onto swallowing yogurt and fruit purees. By June 2015, Everett was tube free, and even began accepting some solids! There are not enough words to describe our joy! Seeing our baby eat is priceless! Thank you, NoTube!
Tube free!Meet Piper!
Piper and her family are from New York, USA. Piper was born at term, and suffered from obstructive sleep apnea, and aspirated all fluids. Physicians also suspect she has a submucous cleft palate. At 3 weeks old Piper was given a NG tube. She was unable to tolerate large volumes of feeds. Piper was put on a 24 hour feed for the next 3 months, with no oral feedings. Piper was transitioned to bolus tube feeds at 3 months old. She projectile vomited most feedings. Her family attempted oral feeding once she was no longer aspirating (at the age of 3 months). Piper would not take any oral feeds, and cried at the sight of the bottle. At 4 months old Piper was accepted into the net coaching NoTube program, and was tube free within 13 days!
Tube free!Meet Nova!
Nova and her family live in Kungsbacka/Sweden. When she was born, she was diagnosed with arthrogryposis, a rare, neuro-muscular disease, which mainly affects her extremities. Nova drank little and very slowly from the beginning. When she was 4 months old, a nasal tube was placed, because she stopped the intake of food altogether due to a human parainfluenza virus infection. She never ate or drank water orally any more, because she became tube-dependent within a very short period of time. When she was 8 months old, a PEG button was placed. When Nova was 1 year old, the family contacted NoTube. After 11 months of working together, Nova is now tube free and likes to eat and drink very much. She still has to learn to accept new consistencies, but she is on the right track.
Tube free!Meet Bennet!
Bennet, his siblings and his parents live in the US. Little Bennet was born with hypoplastic left heart syndrome, a severe congenital heart defect, in which the left ventricle of the heart is severely underdeveloped. An open heart surgery was necessary. Due to his severe medical condition, he received a g-tube 5 weeks after birth. After a successful heart surgery, he was allowed to eat orally, but Bennet didn’t succeed in the transition to oral feeds because he had developed a tube dependency, resulting in oral aversion, food refusal and recurrent vomiting. In January 2014 when Bennet was 16 months old, his parents signed up for NoTube’s Netcoaching program. Bennet learned to eat immediately and all tube feedings could be stopped within less than one month. Bennet did well during the wean, he was happy, playful and active all the time. He started eating different solids (veggie straws, pizza, pasta…), semi-solids (pudding) and drinking water. Since then, Bennet is doing well and the whole family’s life has changed for the better. Bennet is much happier without tube feeds. He is able to participate in family meals and enjoys different kinds of food.
Tube free!Meet Ezra!
Ezra lives with his parents and his older brother in the Netherlands. At the age of 5 months, he received a nasogastric tube due to heavy reflux. During the phase of enteral nutrition, he suffered from severe negative side-effects (gagging, vomiting, etc.) and developed an oral aversion. He had to be completely tube-fed eventually. His parents decided to register him for the Eating School in Austria, which the whole family attended in February 2015. Soon after, Ezra began to make big progress and his oral intake improved. Ezra left the Eating School without his feeding tube and has only been eating orally ever since! In the course of the tube weaning, he was also able to take further important steps in other aspects of his development.
Tube free!Meet Zoe!
Zoe, her mother Maria and her family from the United States registered for NoTube’s Netcoaching program in May 2010. Zoe had some very severe cardiac problems, which had made enteral nutrition necessary for the first month of her life. As an unintended negative side effect of the tube feeding, Zoe developed reflux and vomited and gagged a lot. In June 2010 she got her last tube feed and to the delight of her parents, Zoe has been tube free ever since, while the negative side effects vanished completely.
Tube free!Meet Lukas!
Lukas and his parents, Andrei and Aubri, from Honolulu in the United States registered for NoTube’s Netcoaching program in September 2010 . Lukas suffered from: Hypoxic ischemic encephalopathy, global diffuse brain damage, seizures, high blood pressure, aspiration pneumonia (once), dysphagia and reflux. Previous attempts from various institutions to wean Lukas off his feeding tube failed. The Netcoaching program was started when Lukas was 3.5 months old. The experienced staff of NoTube coached Lukas and his parents through the weaning process. After three weeks Lukas’ feeding tube could be removed as he was eating like a champ! To delight of his parents, he has been tube fee ever since.
Tube free!Meet Melissa!
Melissa and her family live in Canada. In March 2010 they participated in the Netcoaching program. Melissa was born with a palsy of the N. phrenicus sinistral. Because of the severeness of her disease, a NG-tube was placed, which led to better growth, but unfortunately also to a tube dependency. As a result of this condition she vomited, gagged and sweat a lot. Furthermore the whole family system suffered, thus, the family contacted Notube’s experts, who defined Meliassa as suitable for the Netcoaching program, which was started on March 10th, 2010. Two weeks later, Melissa had learned to eat and her feeding tube could be removed. Since then, Melissa and her family are tube free and they enjoy their life again.
Tube free!Meet Daniel!
Daniel and his parents Amanda and Brendan from New South Wales in Australia registered for NoTube’s Netcoaching program in March 2011. Daniel is a monochorionic twin who suffered from severe intrauterine growth restriction with reverse end diastolic flow, due to a marginally inserted umbilical cord to the placenta. He was born in the 29th week of gestation by emergency caeserian section. These circumstances made NG-feeding necessary. Daniel showed a lot of negative side effects like vomiting, retching and gagging. When Daniel and his family started the Netcoaching program, he had his tube for already 10 months. Only one month later, Daniel was tube weaned and he has been tube-free ever since.
Tube free!Meet Reagan!
Reagan and her parents Tracie and Tim from the United States registered for NoTube’s Netcoaching program in December 2010. Reagan was born with a congenital heart defect: Double inlet left ventricle, aortic atresia, Laevo-transposition which made enteral nutrition necessary. One week after birth she already had her first surgery, followed by another in October 2010. As a negative side effect of the long term tube feeding, Reagan got NG-tube dependent, so her parents contacted the NoTube team in December 2010 and on December 12th, when Reagan was 5 months old, the Netcoaching program started.
NoTube’s medical and psychological professionals coached Reagan and her parents through the weaning process and after only 4 days in the program she got her last tube feed. Reagan is tube weaned since then, which is a blessing for the whole family.
Tube free!Meet Ethan!
Ethan and his parents live in the USA. They registered for the Netcoaching program end of May 2012. Ethan was born with a CDH, which was repaired on day 1. Furthermore a short bowel obstruction removal was performed. At the age of 2.5 months, Ethan got a NG-tube. At the beginning of Netcoaching he was 100% tube fed. His doctors recommended a PEG-tube, but his parents decided to sign up for the Netcoaching program. After a few weeks of coaching, Ethan ́s tube could be removed and he has been tube-free ever since.
Tube free!Meet Manuel H.!
Manuel H. and his parents are from Germany. Manuel was born with Down Syndrome and a cardiac defect. Because of Manuel’s severe sucking problems, he received a nasogastric feeding tube right after his birth and was fed by tube since that time. With assistance by the Notube team Manuel’s insurance company has confirmed to cover the costs for the NetCoaching program. So he was able to participate in the online tube weaning program in August 2013. At this time, Manuel was 19 months old. Short time after the start, Manuel started to make good progress and began to eat age appropriate food in a sufficient way. On October 19th, 2013 he was finally weaned off his feeding tube and has ever been eating orally since this time.
Tube free!Meet Sarah!
Sarah and her parents Jeffrey and Judy from Queensland, Australia registered in for NoTube’s Netcoaching October 2010 program. At the age of 3 months, Sarah got her NG-tube due to failure to thrive. She received mainly overnight feeds. Sarah ́s mother found out about NoTube while researching the internet for the best possibility to wean Sarah off her feeding tube. After five days of working with the NoTube team, Sarah got her last tube feed and to the delight of her parents, she has been tube free ever since.
Tube free!Meet Elsa!
A few months after her birth, Elsa from France got a nasogastric tube due to food refusal. Subsequently, a G-tube was implanted by surgical means. Elsa showed severe side-effects of tube feeding: massive oral aversion and frequent vomiting. Her distressed parents decided to participate in the tube weaning course in Mayenne with 4.5 years old Elsa. During the course, Elsa learned to eat orally again. In July 2013, her G-tube was removed!
Tube free!Meet Charlotte!
Charlotte lives in France together with her parents and her older sister. She was born with a genetic defect and had severe respiratory problems after birth. At the age of four months, she lost weight, so she got a nasogastric tube, followed by the insertion of a PEG button. After being in touch with Valérie of the NoTube team, the family decided to participate in the tube weaning course in Mayenne in 2013. The three-and-a-half-year-old girl made great progress regarding her oral intake and after only a few days in the program, she was able to sustain herself entirely by oral means. Even her PEG button could be removed in Mayenne, a fact that makes little Charlotte proud to this day. Since that time, Charlotte eats completely orally and the PEG button stayed in Mayenne altogether.
Tube free!Meet Barnabás!
Little Barnabás and his parents live in Hungary. He was born with an oesophageal atresia requiring tube feeding until the surgical repair. After Barnabás was declared as suitable for the Netcoaching program, he started the wean end of November 2013. He made rapid progress and after only 2 weeks, tube feeding could be terminated. 2 months after treatment start, his feeding tube could be removed. Since then, he loves to eat and eats quite a lot. His favourite dishes are semolina porridge, carrots, pumpkin and ginger bread!
Tube free!Meet Ella!
Ella and her family are from Zurich, Switzerland. Ella was born with Down Syndrome, Oesophageal Atresia and a cardiac defect. The oesophageal atresia was successfully repaired on day 3 of Ella’s life. However, due to the long term tube feeding Ella developed a tube dependency. She was completely tube-fed from the beginning of her life until she was about 7 months old.
Download Ebook: Choose the most suitable tube weaning program for your child: From NoTube’s experts For Parents
Tube Weaning is the process of stopping any tube feeding and for the child to sustain itself orally!
To help you make the right choice we offer some objective facts to help you in your research:
- What is a tube-weaning program;
- What is the best time to start a tube weaning process;
- Things that must be considered before any tube weaning program