“From a healthy child to a severely disabled one”: the herpes virus “ate” Arina’s brain | Life

That the cause of the symptoms is this virus was not determined immediately, but only after six days. During that time, the virus did its job – damaged the girl’s cerebral cortex. Therefore, she will never be completely healthy. But thanks to a loving family and benefactors, the baby, who is now a little over three, is slowly getting stronger. Mother’s dream is that Arina could attend kindergarten together with her twin sister.

“I believe that one day she will stand on her own,” is the goal Arina’s mother, Irina Černiauskienė, has set for herself. Her story only confirms how much the stubbornness, faith and efforts of a mother and relatives can do.

A virus changed life

Arina is one of the twins. Irina had them in her second marriage. “This is not my first pregnancy – I have a 15-year-old son. Even though I was pregnant with twins when I was older, I had genetic tests and they found nothing wrong. I worked in a cafe until the 7th month. True, a caesarean section was planned in advance. But not because of the fruit, but because of my condition – I have an aneurysm in my head, so the doctors didn’t want to risk my health and didn’t advise me to give birth naturally,” said Irina.

The girls were born at a gestational age of 37 weeks and 4 days. “As twins, it’s very good. Both were quite large: one weighed 2,800 g, the other 2,740 g and was 50 cm tall. All three of us felt great, so we came home from the hospital two days later.

There were no problems later either: the sisters grew and developed perfectly. True, when the girls were two months old, Arina’s hand twitches began. “In the hospital, they examined and found that it was epilepsy, but the cause was a high temperature (she had a fever at the time). The doctors said that this happens to babies, calmed them down, prescribed medication, which Arina took for six months. During that time, there were no more seizures, so after half a year there was no need to take medicine,” said the girl’s mother.

According to her, until 1.5 years old, Arina grew up cheerfully, happily and did not have any serious health problems.

“She danced, sang, walked and talked more than her sister. I went to work, and the girls were looked after by their grandmother – the man’s mother. Then Arina got sick – a simple, as it seemed to me at the time, laryngitis cough started,” the woman recalled the beginning of the disaster.

The baby’s health did not improve – she and her mother had blood tests at least three times during the week. “I was told that antibiotics are not needed, that everything is fine, it should go away on its own. One day my daughter woke up very sluggish. He ate his favorite yogurt and went to sleep again. I thought I was exhausted by the disease. But in the evening I decided to go to Santariške (VUL Santaras clinic – 15 minutes past.). Pneumonia was suspected, but neither blood nor other tests showed anything wrong. There was a lack of oxygen – sedation was 87, so they gave an oxygen mask and at that time Arina started having an epileptic seizure. From the reception department, the doctor carried her in her arms to resuscitation,” said Irina about her daughter’s sudden deterioration.

However, the doctors reassured the mother: if this was already the case, it is possible that this is how the child’s body reacts to the fever: “They said: ‘The next day you can come and take the child to the ordinary ward and lie with her.'”

Unfortunately, the next day Irina was informed that the girl’s neurological condition was worrying. An examination of the head revealed a hemorrhage in the cerebral cortex.

“This is a stroke. Then she was transferred to another intensive care unit. Her condition worsened by the hour – a council of doctors was called because they could not determine the reason why the child was dying. We brought Arina to the hospital on Saturday, and already on Wednesday they informed us that if we don’t agree to open her skull (since the brain is swelling), we will lose the child”, Irina recalled the most difficult hours of her life.

He spent the whole summer in the hospital: “They sent us home without any promises”

Cerebrospinal fluid was taken during the opening of the skull – doctors suspected that it could cause the girl’s ailments herpes simplex virus.

“That virus was just ‘eating’ her brain.” In the hospital, the antibiotics “Aciclovir” to fight the herpes virus started to drip on Arina only on the sixth day. Everything that was dripped on her before that didn’t work… The virus had already done its job – for the entire three weeks while her daughter was in intensive care, she couldn’t “drop” a very high temperature of 40 degrees. The epileptic attacks kept repeating. There was a constant hill of tears, because our child was between the earth and the sky”, Irina did not hide.

After spending three weeks in the intensive care unit, Irina’s daughter was transferred to a simple ward, where she could be with her mother, by the doctors’ decision. “The neurosurgeon who operated on Arina said that ‘maybe she will be calmer with her mother.’ Although at that time my daughter no longer recognized people, she did not respond to anything. But the doctor said – “I would get sick in intensive care myself.” That’s why we were put in an ordinary ward”, said the interviewer.

She did not hide it – the first month was the most difficult time. “Due to the brain damage, all her muscles “went out”, she slept during the day and cried at night because of the medication. She could not eat by herself – we fed her through a gastrostomy. Later, little by little, I started going outside with her and there in 1.5 hours. during the walk, I fed her a spoonful of 100 g of yogurt. We spent the entire summer of 2022 in the hospital,” said Irina.

The girl was released from the hospital without any prognosis. According to the mother, in such cases, the patient’s body determines a lot: “It’s already the case with the brain that you don’t know how those neurons will connect – maybe they’ll find a new “path” and the person will start doing something again, understanding.”

Connects with families with similar experiences

Currently, Arina is 3 years and 4 months old. The girl was diagnosed with severe disability. But even such a diagnosis does not seem like a sentence to her family. They rejoice in every achievement of Arina.

“Recently, she started smiling,” Irina said with a smile, and she doesn’t allow herself to believe the assessments of some doctors that “nothing good will happen.” Instead of giving in to pessimism, Arina’s mother is looking for treatment and rehabilitation opportunities abroad. Arina has already been to Poland 7 times.

“There they tell us that we need to work with her. And we see what happens when it works: they put her in a special walker and Arina takes two steps. For a long time it was not clear whether she could see. Nobody could tell us that in Lithuania. But after eye therapy in Poland, she began to observe objects, light, for example, she began to turn her head to the sun. In addition, she started eating on her own – I grind the food, and she eats it herself. Therefore, we do not give up and want Arina to do sports as much as possible”, said Irina.

Herpes simplex damaged brain is a rare medical condition that occurs only a couple of times a year in Lithuania. “How the virus affects the child depends on how quickly treatment is provided. If Arina had been given the right antibiotic on the first day, things would have been different. Unfortunately, it was not possible to determine quickly that it was herpes. After that, she was given acyclovir drip for 21 days…”

Irina said that she communicates with other mothers who are raising children herpes simplex infected and disabled children as a result. The “gifts” left by the virus are different – one girl has only migraines, another has severe epilepsy, another child’s brain is more damaged – after rehabilitation, the boy can sit on his own, but he needs help for everything else.

“Arina’s case is particularly bad. “We recently did an MRI examination, which showed that the cerebral cortex was almost gone – it was “eaten” by a virus,” Irina said.

24/7 Arina takes care of the three

Speaking about the services that are compensated in Lithuania, the woman said that there is a lack of specialists: “There are no ones who know how to work with such children. That’s why we are looking abroad – in Poland, Slovakia.”

The family pays for the services abroad out of their own pockets and a fund to which everyone who wants and can help make life easier for little fighter Arina and her devoted parents can donate. It is true that the State Health Insurance Fund compensates part of these costs.

Irina is happy that the state also pays for some of the devices that facilitate her daughter’s care: for example, a verticalizer – a special device that will allow Arina to “stand” or “sit”.

At home, the whole family takes care of the daughter – Irina, her husband, and his mother also help. Other people, according to the woman, are afraid to be alone with a disabled girl. For example, for defecation – because the girl does not know how to do it on her own, “enemas” are needed, as well as choking, and Arina sometimes has 10 of them a day.

“I work from home, so I mainly take care of my daughter. Of course, two more children are growing up who also need attention. But with the help of my husband and mother-in-law, I have half a day to myself. Of course, the mother-in-law is older, it is already difficult for her to lift, however, Arina weighs 14 kg. My husband knows everything and is not afraid of anything. He also puts together the medicines for a week to make it easier for me,” said Irina, joking that both she and her husband can now call themselves professional nurses and give advice to others.

“We will be interested in everything, we are looking for information, so we can definitely advise others raising similar children about what things are compensated, where to find help. By communicating in this way, we learn new things ourselves. For example, one mother, whose child was born without one hemisphere of the brain, told about how she got a job in kindergarten for half a day as her daughter’s assistant (special assistant – 15 min. post). The girl sees other children, but also her mother, who is busy with her. I am inspired by her example and think that I should also look for opportunities to do the same. Especially since my other daughter – Arina’s twin sister – has to go to kindergarten,” the three-year-old’s mother shared her plans.

On the occasion of Mother’s Day, Irina wished herself and her family to keep hope. She is the strongest motivator.

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Those who wish to contribute to the improvement of Arina’s health are invited to donate to the fund:

Arina Marija Černauskaitė Support Fund

Code: 306288039 Legal form: Charity and support fund

Office address: Vilnius, Laisvės pr. 66-19

Swedbank: LT697300010182409254