Meet Scarlett!

Tube-free since 2016
Meet Scarlett!
Tube free!

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.

From the parents

Our daughter was born with a congenital heart defect that required open heart surgery. At 3 months, she could no longer sustain growth on her own and we made the hard but necessary decision to place an NG tube to help her grow for her impending surgery. She almost immediately developed an oral aversion – gagging. The tube took up too much space in her throat for her to be able to take a bottle. By her surgery, she was completely tube dependent. Following surgery, we began feeding therapy to help wean Scarlett from the tube. With little and slow progress, my husband decided a more aggressive strategy was needed. Our daughter hated the tube, it made it very hard for her to eat and she was never hunger since she was being artificially force fed every 4 hours. We had no luck finding any resources locally that could help us. Additionally, we felt so trapped by the tube and all the equipment that goes along with it. Then we found This team of people is amazing! Not only are they very patient and answer any all questions you may have about the program prior to starting. They are available 24/7 once you start the program to walk you through it.

We have 3 memorable experiences – the first day our daughter ate all of her nutrition by mouth! Then the next day, she ate all of her nutrition by mouth again AND pulled her tube out on her own. She hasn’t had the tube since that day. Even at almost 8 months old, it seemed as though she decided she was done with the tube, pulled it out and never looked back. The third experience was the day our daughter took her entire feed by drinking it. As we learned, drinking is the hardest skill to learn and even harder to learn after 5-6 months old.

The NoTube team is fantastic. They are caring, informative, patient, kind, available and understanding. We live in the United States. And even with an ocean between, I always felt the NoTube team was available and near by for support. I don’t think this team ever sleeps!

Our daughter has been tube free since February 29, 2016. Her development has been incredible since the tube came out. These improvements are not only in feeding, she’s more active, talks more, eats great and is overall happier. Its incredible how much a tube can hold back a child’s development. This program is not just a tube wean for children. It is a tube wean for parents as well. We become as dependent on the tube as our children. I think I had a harder time weaning myself than weaning my daughter. She sleeps, eats and plays like a baby should. I still find myself wanting to count every milliliter and calories to make sure she’s getting enough. But at the end of the day, we (our entire family) has our lives back. We are days and nights are not dictated by tube feeds anymore! IT’S AWESOME!!!!

The most awesome thing that has happened with our daughter is she’s drinking. She hasn’t done that since October 2015 and she did it within 1 month of starting the NoTube program. 

 Down's syndrome tube wean

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