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For Victoria, this was not her first pregnancy: “My first child was already six years old and this pregnancy, like the first, was normal, mild, I had no complaints. But since it is very popular now, we decided to do a genetic test. “
Nicholas’s mother says that the surprises began after the test. At first, the test showed that a healthy child would be born, so the family celebrated the good news with joy. Later, the doctor with an ultrasound saw that a girl would still be born.
Bad news
“Synlab agreed in good faith to do the retest at their expense, shipped it to a more comprehensive and expensive America, and the Americans determined that there would be a congenital genetic defect, but they still thought the child would be born, just not healthy anymore, but with Clalainfelter syndrome.
So when the girl was born, they decided to test Nicholas herself and the whole family because they wanted to find out why the test returned wrong results.
We had several misdiagnoses before that, but eventually we were diagnosed with a genetic disease, Leri-Weil syndrome and the Y chromosome region. Those diagnoses varied, with each new stress.
But the girl was born earlier not because of that stress, because I was doing very well with it, but because she had an infection. I didn’t have any symptoms, so I didn’t know I had it, “Victoria recalls.
Victoria recalls a period of various diagnoses and says that it was very difficult: “We only learn something and read foreign literature, we reconcile.
For example, if there had been a child with Klainfelter syndrome, he could have been mentally retarded and six feet tall, and my husband and I are short, so we survived a lot thanks to that appearance. We were very scared, but we decided to love our son, no matter who he was. “
The woman says she was completely healthy. pregnant woman And I felt great when suddenly one day, lying quietly and watching the news, an unexpected labor began.
The birth lasted three days
Victoria remembers a difficult three-day delivery. Since Nicole wanted to come into the world four months earlier, she had to mature her lungs, give injections, suppress her contractions. Victoria, racked with pain, traveled from Klaipeda to Kaunas, because it is much safer for a child to travel in the womb than in an incubator.
When she was finally allowed to give birth, it wasn’t very difficult, as Nicholas was born at just 742g. Mom says she was infinitely tired, racked by struggles and especially overwhelming uncertainty about whether the girl would live because Nicholas was born with sepsis.
Unfortunately, a few days after his birth, Nicholas also had a stroke in both hemispheres of the brain. On one side is the third grade, and on the other the most difficult, the fourth. Victoria says that it is an inexplicable miracle and force because Nicolás, although quite small, has managed to survive these calamities sent by fate.
“There was a lot of support from the doctors and I would like to thank the Kaunas resuscitation doctors very much. The Kaunas clinics offer great help, the psychologist goes through the rooms and remembers their presence, encourages people to speak.
There is also an organization like “I help to grow up” in Kaunas, which also takes great care of mothers. This support was very necessary, but we lived in Kaunas for a hundred days ”, Victoria recounts her painful experience.
Great help
Mom is happy to have received the greatest support from the most important person: Nicholas’s father, for whom family is very important.
“When I returned from Kaunas to Klaipeda, I felt like I was in space, it seemed like I had returned from another world. It took us time to adapt, but we didn’t seem to have it, because we received a lot of instructions with the places we have to visit for Nikolė’s research ”, says the interlocutor.
Victoria also recalls some terrifying experiences that happened when she returned home: “We had bought a special rug that feels the child’s breath. Nicole’s breathing stopped three times in a couple of months.
When premature babies fall asleep soundly at night, they forget to breathe. I had to experience great shocks at night, revive, wake up the child.
Basically, we knew that there was also a high risk of cerebral palsy, so we immediately started working with him privately and privately. Va has been working for a year. We live at the rhythm of our little girl’s life. “
The anger of Nicolás is a great victory
Victoria admits that she sees Nicole slower than other children her age.
“She doesn’t talk, she doesn’t talk as much as she should, she doesn’t show much emotion, she’s more inclined to adapt to the situation. I would like to be more angry or happy sometimes like a normal child.
With her, all emotions are contained, but you can see that the situation is gradually improving. When she gets angry, my husband and I are infinitely happy. It seems that when you raise a healthy child, you don’t even think about those things, and for us, any strong emotion is a great achievement, ”says the woman.
At the moment, Victoria is working hard to keep cerebral palsy to a minimum, as can already be seen in the girl’s right hand.
People even say that at first glance it is not clear that Nicolás is paralyzed, but he does everything with one hand: “He is still not clear about his legs, because paralysis and its type are diagnosed a little later. And he’s still learning to stand up now, when he meets a 6.5-month-old boy, even though he’s 14 months old now.
Up to three years is the most important moment, now we can help her and work with her to improve the situation. We really want to go to Slovakia, to the rehabilitation center, here is the dream of our dreams.
But the prices are very high, so we can’t pay for them ourselves and we have to go at least twice a year. “
When asked where she discovers both strength and strength, Victoria responds that she simply has no other choice.
“It just came to our knowledge then. One way or another, we move forward, we work hard and so we strive to live,” inspires the mother of optimism Nikolytė.
Victoria asks all indifferent people to contribute to the treatment of little Nicolás: LT247300010094728272; Viktorija Arnotienė.
