Paula and her parents live in France. Paula was born with Pierre Robin syndrome, which compromised her orality and breathing, therefore a Button has been placed for enteral nutrition. After stabilization of the medical situation, Paula didn’t succeed in the transition to oral feeding as she has become tube dependent. Her parents registered Paula for the Eating School in Mayenne, France, in which Paula took part at the age of 22 months. Paula learned to eat, tube feeding could even be stopped during the Eating School and her Button has been removed shortly after. Today, Paula eats age-appropriately and with joy!
From the parents
Translated from french
What was your life like before you decided to sign-up for one of NoTube’s programs?
Before our participation in the Eating School, our daily life was compromised, nobody could take care of our daughter. Two times per week she was at daycare where she could play with other children, but I had to fetch her early to tube feed her. As my daughter got a Nissen fundoplicatio, she was not able to vomit but gagged and retched regularly.
What were some of your most memorable experiences during the program?
We will never forget the day on which she finished her soup for the very first time as well as all other improvements. Our child surprises as frequently, she is strong. The exchange with other families and the atmosphere at the Eating School were strengthening. All parents made similar experiences and were at the same point… as well as the availability and the support of the NoTube Team.
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
We were well advised by the NoTube Team! We could raise all our concerns and doubts at all times, they were available and reassured us very much! They helped us to work on ourselves, to change the experiences and habits towards food to support our child ideally in the “learning to eat” process… The children were in daily exchange with the team, the development of each child during the wean could be observed and guided in an optimal way. Really a professional and human team.
How has your life changed since you participated in the program?
My daughter goes to school, eats at the cafeteria, at her nanny’s, she sleeps at her grandparent’s house… she is more open to other children, is sociable, but she knows that she is different compared to other children. We must not fear that she removes her PEG accidentally, no daily nursing (her tube site was always sore, we had to treat her with nitrate), she doesn’t retch and gag anymore, she eats almost everything! And as far as I am concerned, I was able to go back to work.
What’s the most awesome thing that has happened with your little one since completing the program?
We have been on holiday for the very first time and that is really the best! To see how she thrives at school and at daycare!