Sidney

Sidney was born with congenital diaphragmatic hernia and spent 8 weeks in the neonatal intensive care unit. His weaning began in the summer of 2024. 

Sidney comes from the USA. He was born with a congenital diaphragmatic hernia (CDH). At the start of the Netcoaching program he was four months old and was fully tube fed. He showed signs of oral bottle aversion. His parents registered him for the online tube weaning program in summer 2024. During Netcoaching he accepted the bottle again and drank good amounts. He improved his oral feeding skills and learned to accept small amounts of baby food. Due to his good oral progress, his feeding tube was removed one month after treatment-start. Sidney has been tube-free since then and is feeding in an age-appropriate way.

Tell us about your experiences with the eating or feeding situation of your child (with or without a tube) before, during and after the treatment. How did you feel during the program? What was difficult, what was easy? What kind of changes did you notice in your child? Please share with other parents what you care about most ...:

NoTube did not just change our lives. NoTube gave us the lives we wanted to live with our baby.

Our son Sidney was born with a Congenital Diaphragmatic Hernia (CDH) and spent 8 weeks in the NICU before coming home with a feeding tube. At the time of coming home from the hospital, he was taking 10–20 mL of milk from a bottle. That amount gradually tapered off over a week or so until he was no longer taking anything by mouth, and he soon developed a bottle aversion.

We were receiving weekly visits from a Speech-Language Pathologist through home health, but nothing we tried seemed to make him want to eat. We gave him breaks from trying to eat by mouth. We tried every position under the sun, but nothing helped. We were following all the advice we were being told to do by our weaning team here (Utah, USA), but nothing was working. They kept saying he was not gaining enough weight and that we needed to increase his tube feeds. They also said that CDH kids just have reflux issues and that he would grow out of it. But he was clearly uncomfortable almost all of the time, and he was also throwing up between 10–30 mL with each tube feed. Our hearts could not handle sitting around and waiting for him to grow out of this if there were things we could try.

We toyed around with the idea of a weaning program for weeks and weeks. We had a lot of hesitations—sure, they have all these success stories… what if Sidney is different? What if we pay all this money and it doesn’t work? What if he loses a bunch of weight? We trust our doctors and therapists—is this going behind their back and ignoring their advice?

We researched and researched programs. We read testimonial after testimonial (like this one) about how great these companies were. But we were scared to take the plunge. Finally, we decided that if it didn’t work, that would be devastating… but if it did work, our lives would be changed for the better. We looked at all of the tube-weaning programs out there, but when we read up on the Gratz Method and how NoTube were the ones who invented this method and have been doing it for 30+ years, we knew that if we were going to take this leap, we needed to leap into the arms of the people who were the most experienced and knowledgeable.

I was worried about the confidence of the NoTube team regarding weaning our son. If you do the intake form and they say they can wean your child, they CAN. I did the free meeting with Eva, and she said, “It sounds like there is no reason he needs the feeding tube and that his aversion/inability to eat comes from never being hungry/never needing to eat.” I thought it just cannot be that simple! It WAS just that simple! Within 1 week of starting the NetCoaching program, Sidney had stopped throwing up completely. I do not believe he ever had reflux. He was just being overfed. Within 1 month of the program, Sidney started accepting the bottle again, and within 6 weeks, he was 100% oral, and we removed his feeding tube for the last time. Sidney stagnated on weight for a few weeks, but he never lost any while we were doing the program, and now he is gaining steadily again! And he is a much happier boy who is able to live a better life!

Every single person we interacted with was kind and courteous. They were empathetic and showed concern and care for Sidney without belittling his issues and the difficulties they created in our lives. I specifically want to thank Lili and Marion as the two who worked the closest with us and Sidney. They were so kind and caring. They were timely in their responses to our questions and allowed us to freak out at them a couple of times when things were stressful without making us feel bad for being scared. Having a team of doctors and therapists who have been doing this specific thing for a long time was so comforting to us, as we felt we were ignoring our regular team’s advice for a little while.

I cannot sing the praises of NoTube enough. If you are in a similar hopeless situation with your child, reach out to them. If they say they can do it, they can do it. It took a leap of faith on our part, but our lives will truly never be the same.

Thank you, NoTube!!!

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