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.
From the parents
The fee we paid for Netcoaching was the most well spent money in my life, and I tell anyone who asks.
My daughter just had heart surgery and wasn’t willing to drink more than 30mls at a time (on a good day). She had had a NG tube for four months at that point. We started feeding therapy, and ask our doctors for help with weaning. The feeding therapist said “She will not enjoy drinking by mouth for a long time, my professional recommendation is to go ahead and get a G-tube”.
The doctors had some suggestions but nothing really helpful. I had been reading about Graz and signed up that very same day in the afternoon. After emailing back and forth with MDS, she asked to please not do the G-tube and give her some days. That week we started the wean. The first attempt was unsuccessful (my daughter pulled out the NG-tube so she went from full feeds to none in one day). We tried again a week later. It was so hard to go through a wean, she was not drinking and getting delirious, and I am sure that if MDS had not been there we would have given up. It was such a relief to have someone tell you what to do and give you the assurance that things are moving in the right direction, even if you think they are not.
We felt very comfortable because I knew MDS would let us know if something was wrong and if the tube needed to go back in, so I felt she knew what she was talking about. She had great suggestions and always responded within 24 hours. With her support, Zoe was weaned and a month later, back to her original weight. From there, the weight gain started to come steadily.
It’s been 1.5 years, and Zoe is a happy toddler that eats and drinks normally. I sometimes think how life would’ve been if we had followed the speech therapist recommendations. We would have a g-tube dependent baby that would vomit a few times a day and would want nothing to do with food.
Thanks to MDS and the entire Graz team! I wish more doctors here followed your lead. You are really helping children all over the world.