Sophie is twelve years old and has already had to get more operations in her life than most people will ever have in their entire lives. The girl suffers from a rare disease, the cataracts syndrome, which is only available in Austria in this form.
In Sophie, tied up sneez syndrome, also known as TCS, also occurs. The summarizes neurological symptoms that occur by attaching the tailstinate at the end of the spinal canal.
This deformation is congenital with Sophie. It was discovered during pregnancy. “The doctor saw that there is something wrong with the kidney, and TCS was also discovered. It is also called tied back,” says Sophie’s mother.
First operations immediately after birth
Immediately after the little girl was born, it was operated on for the first time – and then a second time, because because of the first operation of the intestine it was not independent. Sophie still has an artificial intestinal output. She was in intensive care for three months and after four months she finally went home.
Breathe for mom, dad and brother? No. Because the little one needed infusions that had to be brought out of the pharmacy in Vienna once a week. “We drove every Friday every Friday to Vienna every Friday in the late afternoon until their gut finally worked again,” says the father. But he liked to accept that for his little one.
More than 100 surgical interventions and Panic fear for needles
To date, Sophie had to be placed in anesthesia more than 100 times. Your most dangerous operation was just a few weeks ago. The spinal cord was separated from a lipoma for which it had grown. “We have long considered whether we should do it at all.
On February 3, Mama and daughter went to the Children’s Surgery Center of the AKH Vienna. After the procedure, the twelve -year -old 72 hours had to be flat. “That alone and the pain was a horror,” says the mother. Every time the girl tried to mobilize, violent headache came.
Until it was discovered that the area where the spinal cord was leaked was reopened. Intended: Work again. Again Intensive Care unit, are 72 hours again. “This time my daughter was bad too. In the morning the sidewalk of the wound was completely soaked.”
It was assumed that the position had been torn again. Even more glue was used in the third operation and a fascia was sewn. Again the girl had to last 72 hours. “We really panicked when we put them,” says the mother, who has not always given away from the side of her daughter. And the worst happened: Sophie had a serious headache again this time, complained about nausea. The fourth operation was in the room. They wanted to try to close the crack with a blood patch. A top radiologist investigated the girl again. Then the good news. The seam was no longer torn. After weeks, Sophie was finally allowed to go home.
Room arrest because it was impossible
She had to spend a few days here in her room. Because this was on the first floor and she could not just go up and down the stairs, the ground floor was denied her for a few days. In the meantime, she can move slowly with the walker, but still a relief for her parents.
After the many hospital experiences, the girl is afraid of needles. “If she gets access, we have to sleep,” says the mother.
An operation closely is now on the program because a foot has been distorted on vacation after an accident. The parents Sophie don’t want to do that yet. “We now need time to prepare them mentally,” the two agree. Because she combines different rare things – for example, she has two noise mothers, problems with bubble and intestine – she always has to go to urological studies. “Our most important clinic for this is in Linz, but we were already in a top surgeon in Cologne. You always experience arguments, even if everyone always makes you really nice. The sisters of our station in the operation of the children in the AKH are great, for example. They ensure where possible.” Sophies Mama is currently a Caren for the profession. “Otherwise I couldn’t be that much with her,” she says.
“People, be grateful if everyone is healthy”
Despite everything, Sophie is a happy person. “It’s great how everyone always strives that they can lead a fairly normal life, we are very grateful for that,” the parents believe. And are often surprised by people who get upset about small things such as eating at school or in kindergarten or bad weather. “People, just be grateful if everything is fine. Some have much more difficult and do not complain about it.”
Source: Krone
I am Wallace Jones, an experienced journalist. I specialize in writing for the world section of Today Times Live. With over a decade of experience, I have developed an eye for detail when it comes to reporting on local and global stories. My passion lies in uncovering the truth through my investigative skills and creating thought-provoking content that resonates with readers worldwide.
