Meet Zachary!

Tube-free since 2015
Meet Zachary!
Tube free!

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!

From the parents

We had incredible luck in meeting an angel on our journey who put us in contact with the family of a tube-fed girl, who was weaned thanks to NoTube. Our son, Zachary, was born in January 2013 with a rare genetic syndrome (Cornelia de Lange syndrome), which affects his intellectual development and his motor skills. He had been tube-fed sinc his second day of life, as he couldn’t suck. For a whole year, before we decided to take part in the Netcoaching program, we read an incredible amount about NoTube and joined a parents’ group on Facebook to read reviews from parents all over the world.

A few months before the program began, a PEG-tube was discussed for Zachary. When we asked other parents in the Facebook group about their experiences with those, they all encouraged us to try NoTube before we let Zachary undergo such a procedure. We didn’t need long to make the decision since we already knew in our heart and mind that we would take part in the NoTube program and that the PEG-tube would only have a minimal impact on his learning development.

We had been treated by occupational therapists for over two years, and had tried our best to wean our son from the “umbilical cord” he was fed through. Unfortunately, Zachary wasn’t that interested in food, despite the wide range of food which we offered him and the many creative attempts we made to awaken his interest in eating. We were desperate but still convinced that our son could learn to eat, so we took the first steps with NoTube to see if he could be weaned. 61 days later, when NoTube team officially confirmed him being tube free for real, we could still hardly believe it. We still felt “tube dependent”, although it was our greatest wish to get rid of it…. The weaning of a child is a complex process and the whole NoTube-team was of great support along the way; a way that was short and long at the same time! Today, it has been more than 3 months since Zachary began to eat, began to catch-up on his weight and he has flourished exponentially! The decision for NoTube was the best decision of our lives and it has brought lasting improvement to the quality of life of our son.

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zachary with fater

 

 

 

 

 

 

 

 

Zachary

 

 

 

 

 

Testimonials

We’ve helped over 3,000 children learn to eat without their feeding tubes
  • Meet Mika!
    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!

  • Meet Lotta!
    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.

  • Meet Gina!
    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.

  • Meet Everett!
    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!

  • Meet Nova!
    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.

  • Meet Bennet!
    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.

  • Meet Ezra!
    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.

  • Meet Zoe!
    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.

  • Meet Lukas!
    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.

  • Meet Melissa!
    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.

  • Meet Daniel!
    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.

  • Meet Reagan!
    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.

  • Meet Ethan!
    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.

  • Meet Manuel H.!
    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.

  • Meet Sarah!
    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.

  • Meet Elsa!
    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!

  • Meet Charlotte!
    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.

  • Meet Barnabás!
    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!

  • Meet Ella!
    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.

  • Meet Mika!
  • Meet Lotta!
  • Meet Gina!
  • Meet Everett!
  • Meet Nova!
  • Meet Bennet!
  • Meet Ezra!
  • Meet Zoe!
  • Meet Lukas!
  • Meet Melissa!
  • Meet Daniel!
  • Meet Reagan!
  • Meet Ethan!
  • Meet Manuel H.!
  • Meet Sarah!
  • Meet Elsa!
  • Meet Charlotte!
  • Meet Barnabás!
  • Meet Ella!

Download Ebook: 8 Reasons Parents Continue Tube Feeding Their Children

Discover the common misconceptions that exist that prompt parents to continue tube feeding although it’s no longer medically necessary.

In this ebook, you’ll learn:

  • The common misconceptions about the necessity of ongoing tube feeding.
  • Why some parents are afraid to free their children from the feeding tube.
  • The options available for parents who wish they could teach their child to eat.