Marie and her family come from Germany. Marie was born much too early. As a result of her extreme prematurity and her complex medical history, she was given a nasogastric tube immediately after birth for her nutritional needs. Because of the long-term enteral nutrition, Marie developed tube dependency, accompanied by severe vomiting, food refusal, and a noticeable oral aversion. Once Marie was medically stable, her parents wanted to help her have a tube-free life. So, in August of 2018, the entire family traveled to Graz to participate in an Eating School. It was a good decision; shortly afterward, Marie was weaned from her tube and has been living tube-free ever since.
From the parents
Translated from german
Whew, am I glad that I got to travel to see you in August, 2018. I, Marie, that is. In May, 2017, I was born prematurely. I can tell you: my start in life was no bed of roses, but I somehow managed it. Unfortunately, from day one, I had a strange tube in my face that I could not get rid of no matter how hard I tried. The doctors wanted me to get a PEG, but my parents successfully fought against that.
Before my family and I travelled to Graz, every day revolved around filling up my tummy. I often had to throw up. Eventually, I couldn’t handle it when anything even touched my mouth. At this point, I started speech therapy, but even that couldn’t help me to get rid of the tube. So, we decided to drive to Graz.
We drove 1200 kilometers in the car without knowing what awaited us. I can tell you, I was pretty nervous. I thought the first few days were very strange. I had such a weird feeling in my tummy… This feeling, I didn’t recognize it. My sister and my parents convinced me pretty quickly, though, that melon puree is totally my thing. After that, I managed to fill my tummy a little bit more each day, and that weird feeling disappeared. The rest of the time just flew by. As we drove home, we were all convinced that by Christmas I would be rid of that crummy tube. And, what can I tell you, four weeks after beginning therapy, the tube was out.
That day is like a holiday for us, because our life is so unbelievably more peaceful. And, you know what? After I eat, I can move around – without throwing up. I can be rowdy and play with my sister, and my food stays in my tummy.
A few weeks ago, I unfortunately had to go to the hospital again, but even with a fever of over 40°C, I was super hungry and ate. Mama and Papa were mighty proud.