Meet Colombe!

Tube-free since 2015
Meet Colombe!
Tube free!

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.

From the parents

Translated from french

What was your life like before you decided to sign-up for one of NoTube’s programs?

Before we started the program, we had two open-heart surgeries within five months. For each surgery we had to go to hospital, the procedures were very complicated. Colombe was tube fed 20hours/day, she vomited a lot. Regularly, mainly at nighttime, Colombe gagged and vomited her tube, therefore we had to replace it quite often. We needed to get up during the night: Vomiting, which interrupted the tube feeding, clogging of the tube,… I am not even able to list all the reasons.

What were some of your most memorable experiences during the program?

  • Colombe covered in chocolate, to bathe her after her meals three times a day
  • The whole family participating in feeding Colombe. Even her two big sisters were so proud to show her how to eat.
  • When I removed the tube and threw it away.. I did not dare to believe it, but I was full of  hope.
  • The lovely messages from the Team, always full of trust and encouragement. They were always positive and gave us hope when we we desperate.

Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?

Yes, at all times. They answered all our questions. At the beginning it was hard to trust a new Team which we have never seen. Colombe couldn’t eat anything and we were exhausted after a stressful year we had gone through.

How has your life changed since you participated in the program?

Colombe eats! She drinks her bottle. She doesn’t eat that much yet and still vomits when she is ill, but she keeps her weight stable, it is great. We know how to deal with different situations.

Since some days we are able to sleep at night! (Before we had to get up as Colombe was hungry)…Even when the day starts at 4am, it is such a pleasure to see Colombe asking for food and being angry if we don’t prepare the bottle fast enough. We can sleep without worries about a clogging tube. Colombe is slim, but she is a little rascal and her progress in her psychic and motoric development are enormous. We are able to go out without the machine which peeped regularly.

What’s the most awesome thing that has happened with your little one since completing the program?

To sit with her at the table, to give her a piece of bread. To watch her eating the soup which i prepared for her sisters. That we are able to go out without the … To visit her cardiologist who was stunned about her progress…and to remember the visit one year before when we sat in his office…we wanted to ask him how we could accompany our baby. We thought she will immediately die after birth. What a journey!

A big step has been made through the wonderful work of your Team! Thanks to all, we owe you a lot and we will never forget that!

Guillaume and Anne-Solène 

Colombe img_7022-2 img_6818-2 fullsizerender_4-1 fullsizerender_3-1 img_4775-2

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.