TIN(16)

Rijeka native Tin Juraga (16) was born completely blond. Doctors at the Rijeka maternity hospital immediately knew something was wrong, so they urgently transported the boy to the children's hospital in Kantrida.
They found that he had transposition of the great vessels and narrowing of the blood vessel leading to the lungs. When he was just five days old, Tin and his mother Ivona were transported to Italy, where his diagnosis was confirmed and where he underwent surgery at the age of nine months.
"The surgery was successful, and the doctors then implanted a so-called donor tube in Tin, which dilates the blood vessel. They strictly forbade him from any exposure to great physical exertion, stress, and extreme sports. Despite everything, he had to have a second surgery at the age of 13," says Ivona.
A month after the surgery, Tin felt much better and has had no problems since.

"Today I live a completely normal life, unburdened and carefree," says a smiling Tin, who plays volleyball recreationally. He adds that he still has an unfulfilled wish, which is to bungee jump at least once. His mother is much happier today, too, but there are things that still left a bitter taste in her mouth. He believes that the state is not sensitive enough when it comes to such diagnoses.

FRAN (11)

Fran Zgrajski (11) from Varaždin, doctors noticed a heart defect already at the first systematic examination, when he was only one month old. required a series of operations.
After they did everything they could at Rib in Zagreb, they sent Fran to Graz, Austria, where he had a stent implanted. "When he was finally sent home, he had to take five types of medicine, three times a day for the next four or five years," Fran's parents say. They also had to buy Coaguchek, a device that Franu's mother used to check her blood density at home every other day.

They checked his blood density.

When he was three years old, Fran had to have another heart operation, and then he was diagnosed with pulmonary hypertension. Because of this, he had to use Viagra, which dilates blood vessels, which we had to buy because it was only free in hospital treatment - Fran's parents recall, adding that his chest was opened three times. Due to illness and operations, Fran walked very late, only at the age of three, and between the ages of 4 and 5, Fran also developed heart rhythm problems, so doctors implanted a device under his skin that records the heart's activity, which the boy wore for three full years.

Just design exercises

"In addition to all this, Fran often had bronchitis and laryngitis, which made him quite tired. His muscles atrophied twice, and the stent they implanted in Graz will have to be expanded considering Fran's development," explains Ivana, who is the head of the Varaždin-based association Big Heart to Little Heart.
Due to his condition, Fran is not allowed to run, and he only does body shaping exercises in physical education. Despite everything, he loves to ride a bike. His entire 5th grade class at the Varaždin elementary school is understanding of him, as is his homeroom teacher and other teachers at the school. Despite everything, Fran is a cheerful and cheerful child who at first glance looks just like his peers. In fact, at only 11 years old, he has gone through a very difficult life.

EMA

12-year-old Ema was born with a heart anomaly that began to manifest itself when she was three years old, but fortunately, she got rid of this burden with surgery in December. She suffered from supraventricular tachycardia, which manifests itself through arrhythmias and sudden heart palpitations. This happened because Ema had two additional functional channels inside her heart, which caused the heart impulse to move in a circular motion.

Ema's father Damir tells us what her and her family's life has been like all these years.
"When it all started, we had no idea what was happening and we were completely lost, and that's when they first encountered it in the Koprivnica hospital. Ema's pulse reached up to 260 beats per minute during the attacks, so we stopped them by inducing vomiting, with ice, and we also figured out that it works when placed in the candle position. At first, they didn't have the medicine in the Đurđevac emergency room or in the Koprivnica hospital" – Damir tells us.

You never knew when or where Ema would have a seizure, so she had to stop swimming and all her efforts, and she couldn't go to the prom, because it happened to her even in situations where she wasn't making any effort, for example in class or in the car on the way to the swimming pool. Ema's procedure was delayed until she reached a certain age, and it was also rushed a bit because of her frequent seizures. Specifically, there were no rules. As her dad says, she used to have seizures once or twice a month, and sometimes she wouldn't have them for three months.

"She would be as pale as a rag and you could see her shirt rising above her beating heart. And the medicine that was used to restart her heart intravenously is not a good idea to give too often. "In addition, it cost us 800 kuna a year, because health insurance doesn't cover it" - Damir introduces us to the situation and praises the emergency room in Đurđevac, which stocked up on medicine just for Ema, so that they would always be prepared.
The parents would always manage to stop the first, minor seizure, but after three days there would always be a second one due to another canal that was unknown, and Ema herself told us how she experienced it.
"For me, these seizures were quite painful and everything happened while I was conscious, and when I got the medicine, something like a kind of leap came and then it was all over" - Ema describes the eye conditions she had to deal with for ten years of her young life.
As Damir says, wherever they went, they took the medicine with them and stored it in the refrigerator, it was going to a cafe or to the seaside.

"When she had seizures at school or at the seaside, there was always panic for anyone who had to deal with the situation at that moment, from the teacher to the doctor in Labin" - recounts the father of the adventures of this family already accustomed to the situation.

The surgery lasted about four hours, which Ema bravely endured while awake.
"The procedure was not an open-heart procedure, but was performed through a vein. During the surgery, she was deliberately given seizures to see if freezing the ducts had worked. However, at first, it was not known that Ema had two such ducts, so the seizures continued even after freezing that one, until they discovered that there was another one and extended the surgery and solved everything at once," recounts Ema's father.

Today, this girl no longer has to take that aggressive heart medication and now only takes medications such as aspirin to prevent blood clotting and for blood pressure. However, despite the successfully performed surgery that is now behind her, other problems have cropped up.

Ema started fainting frequently, which happened to her the morning of our arrival, after a week without fainting. Because of this, this girl recently spent a month in Zagreb in the hospital to have all possible tests done on her, and more tests are waiting for her.
"They can't find the cause. It was concluded that it is not a direct consequence of the heart and the surgery, but it is assumed that it is a psychological or neurological trauma after everything she has been through. There are moments when she feels like her heart is beating a little faster, and she immediately fears that she is going to have another seizure," Damir explained to us. After she fainted twice at school, the family decided that Ema should finish the school year by being homeschooled.

When she grows up, she wants to be a neurologist, and her current desires are just to go to school, have pizza and a movie with her friends, and practice basketball. However, she is deprived of even that, not for social reasons, but for health reasons, and her choice of future career is also related to them.

"I last went to school four months ago and I'm behind on my studies, but I'm trying to catch up. I used to be an excellent student, but now I also have school in the hospital and, considering the situation, I'm doing pretty well."
"The teachers are happy. I miss school and my colleagues, but my friends come to visit so I only go outside the house for a little bit of fresh air, and I was at a birthday party the other day," a visibly tired Ema tells us, clearly exhausted by fainting spells, which, according to Damir, look pretty ugly.

However, given the "sift and sieve" they have been through, as he says, they have already become callous and accustomed to the whole situation and are confident of a positive outcome, and the cheerful spirit of Ema's father, who turns everything into a joke, seems to make the situation easier for his daughter.
Our heroine told us that she has had enough of the hospital and what the tests she has to undergo look like, for which she is already practically specialized and ready for her chosen career as a neurologist.
"The most painful thing for me was the lumbar puncture, after which I had a sleepless night. This is where spinal fluid is removed from the spine with a large injection. Then I have to be observed all night long on all kinds of devices for measuring pulse, breathing, blood pressure, and the like, such as EEG and ECG, magnetic resonance imaging of the spine, and more. The most interesting test was when my mom and I were up all night so that an EEG of my brain waves could be done after a sleepless night, so we played, watched TV, and walked around Rebro at two in the morning," Ema tells us about everything she's been going through.