Wende and her family are from the Netherlands. She was born with chromosomal aberrations and laryngomalacia. She also suffered from severe reflux. At the age of about one year, Wende received a nasogastric feeding tube due to failure to thrive. During and after drinking, she also suffered from a lot of pain. She often cried for hours. Due to long-term enteral nutrition, Wende stopped eating and drinking and developed a tube dependency resulting in excessive vomiting and oral aversion. Thus, at the age of almost three years, Wende’s parents decided to participate in the Netcoaching and to tube wean Wende. During tube weaning Wende was able to gradually increase her oral food intake. Therefore, her NG tube could be removed successfully two months after starting. Since then, Wende has been feeding herself completely orally and is making great progress in her eating development.
From the parents
What was your life like before you decided to sign-up for one of NoTube’s programs?
Very very frustrating and difficult and surviving.
What were some of your most memorable experiences during the program?
Of course the day the tube went out.
The day the day care centre told us that Wende had eaten like any other ‘normal’ child.
The day she was very thirsty because of fever and therefor started to drink from her sippy cup.
The day Wende was fed pear by her peer at day care. He also announced ‘bite’ and Wende took the piece of pear.
The day Wende discovered chocolate flakes and didn’t want to share.
The day Wende didn’t needed her large backpack, but took her little girls back pack to day care.
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
Yes, very attentive. All the time.
However the following was also very important for us: When Wende was ill, they really wanted to know how Wende was doing. They suggested to see a doctor, just to be sure. But when we recognised the symptoms of her being ill and we were sure she was doing fine, also then they trusted us.
How has your life changed since you participated in the program?
Yes, we finally have our own daughter. We can take care of our child on our own.
What’s the most awesome thing that has happened with your little one since completing the program?
She is developing more than ever, especially in communication. She is more clear in yes and no. She is feeding us very determined. Even with some fantasie. She is communicating more with her peers.