Parallel worlds of Maxim Stolyarov

12-year-old Maxim Stolyarov suffered from a little-known disease in Russia-the muscle dystrophy of Duchenna. And he died from the fact that the hospital did not really know how to help him

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More than anything in the world, Maxim liked to sculpt from plasticine. Or still play computer games? He dreamed of gathering a million likes for a post about passing an unfinished level. No, probably still sculpt. He could spend hours and days to create his own desktop world, where tiny knights did not even fought with each other, but with an invisible formidable enemy. Like Maxim himself.

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Love and get sick

12-year-old Maxim Stolyarov suffered from the muscle dystrophy of Duchenne. A disease that is little known in Russia. Even among doctors. Therefore, most of his life he did two things - he was sick and loved.
“He was very kind, affectionate, gentle,” recalls Lyudmila's mother. - He loved the sisters - Christina, who turned 12 at the end of November, they were the weather, together the cartoons were watched. He adored the younger Dasha. She has a Down syndrome. At that time, she was one and a half years old, they all made together, played, laughed. Loved to draw. He loved the brother of cousin Sasha and sister Masha. Maxim even had a password on a laptop "I love you, Sasha." They had such mutual understanding, such friendship. Sasha always played with Maxim, did not refuse anything, even though he loved to study 17. He loved the teacher. They always had common topics for long conversations - about God, about space, about politics. ”
These people were perhaps the only echoes of the world that Maxim almost did not know. He had the world of his plasticine knights on the windowsill. There was a world of a loving family. And somewhere-he understood this-there is also a world of other people whom he was very interested in.
“He loved long conversations. And he sometimes had such abstruse questions that you are sitting, clapping his eyes, you don’t know what to say. We, in general, have no one. Grandma, my mother -in -law, dad, my sister ... And then suddenly Maxim began to fantasize, as if he, for example, the president. And then he would have fed, dressed, would have cured everyone ... "
And he himself was not cured.

"I will not treat you"

Maxim passed away on August 6, 2016. He spent the last days in a hospital where he was not waiting for him at all. Natalia Kulikova, head of the Pediatric Department of the Samara Regional Clinical Hospital named after the V.D. Seredavin, became a representative of another world for Maxim, who did not intersect with his own. How the world of the Samara hospital did not intersect with the world, where there are experts who know how to work with patients with the myodistrophy of Duchenne.

“I still can’t sleep normally, I constantly think, I think. And I don’t even know who to consult with, which specialists to contact, ”Lyudmila grieves. - One question does not let me go, sometimes to a headache: what should I do? Go to the prosecutor's office or not? After all, I have no direct evidence, there are no video recordings of how Kulikova threatened me, which would not take my child anymore in his department. This is after she had a conflict with the fund. ”

Illustration: Rita Cherepanova for TD

We are talking about the Momio Charitable Foundation - the first fund for children with myodistrophy Dyushenna, who supports parents, increasing the level of training of medical personnel and the quality of medical assistance, advisory assistance with attracting the best specialists, social support and psychological assistance. All this was tried to do all this for Maxim and Lyudmila, urgently arriving in Samara at the request of the boy’s mother.

"Contacted the scammers - so go to your Moscow, but I will not treat you"

“If it were not for the“ word of mouth ”, we might not have learned about Maxim's situation,” says Elena Shepard, co -founder of the MoMio Foundation. - In the department of the SOKB lay a man from the family who was in our rehabilitation camp. From him, Lyudmila found out about us and immediately called to Moscow. But this was already after Maxim experienced two clinical deaths. Time was missed, moreover, the obvious conflict with the staff of the hospital had risen. When the head of the pediatric department found out that I made copies of Maxim’s disease, acting by proxy, she literally changed in her face, immediately became stiff and sharp and literally drove me out of the office. After that, the pressure on Lyudmila immediately began (“they contacted the scammers - so go to your Moscow, but I will not treat you”. ”

When mom is nearby

Maxim Maxim is sure that her son died due to oversight and not rendered in time. And she has grounds for this. “When he went to the hospital in the spring, on the ambulance, the reason was a stop of breathing,” recalls Lyudmila. - As they later explained, doctors should immediately connect to the IVL apparatus in such a situation and send the patient to intensive care. And Maxim was simply pulled like a log into the department where he was lying all day-and nothing ... Because of this, he got even worse. ”

The formulation of the representatives of the fund is more restrained: “An impregnation is not yet a proven fact,” emphasizes Elena Shepard. -We believe that the tragedy occurred due to the fact that medical care was provided without taking into account the underlying disease. When the doctor does not pay attention to the patient until he begins to blue, questions arise, of course.
The child is taken to intensive care, when he is still able to speak and shouts to his mother: “Please, I don’t want to die!”, Then the first clinical death follows, then another one, and Maxim is returned to Lyudmila in a state of coma with a pipe for breathing (tracheostoma) in the throat. You know, it sincerely seems to me that if it weren’t for the mother who was nearby all the time, Maxim would not have survived to the hospital. It was Lyudmila - herself - that provided her son the necessary assistance. After intubation, she noticed that the Medsestra girls come to take sputum only once a day, and Maxim’s squeal intensifies, and just begged: teach me. And then every half an hour he sanctified the child, like a real nurse. She literally pulled out Maxim. "

That short period of the house - between the April hospitalization and the last days of Maxim - was also a landmark. “Maxim went to improve,” says Lyudmila. - He began to react to the presence of loved ones, follow us with his gaze. I re -taught him to eat from a spoons, swallow. I read to him ... "

But in itself, the fact of the presence of a palliative child at home without any support of specialists of the palliative service was discouraged.

To die home

The main question that Elena Shepard does not cease to ask himself: why did Samara specialists flatly refused to contact Moscow colleagues?

“When Maxim was taken to the hospital with a respiratory stop, Lyudmila had not yet managed to contact us,” recalls the co -founder of the MoMio Foundation. - But immediately after the call, we connected very actively. They tried to combine the leading doctors with Moscow colleagues. One of the best pulmonologists of the capital with experience in this disease, Vasily Andreyevich Staffnitsky, was personally ready to remotely advise respiratory support from respiratory support that arose due to non-sputum non-performance (maxim was not provided with a bickering). He sent his conclusion, wrote a recommendation.

Illustration: Rita Cherepanova for TD

We tried to explain that the standard oxygen therapy for Dyushenna dystrophy with difficulty breathing is difficult to breathe. But everything was pointless. In response from the doctor, only a list of equipment for Maxim came, in which there was a ... oxygen concentrator for oxygen therapy, which was not shown to the boy. And even when we bought everything necessary for the hospital for the hospital, the tonality of the conversation did not change, and any of our proposals came down to the oncoming question: “And who are you, in fact, such - and do you have a medical education?”

Why did Samara specialists flatly refused to contact Moscow colleagues?

The co -founders of the MoMio Foundation do not have a medical education, but they have been studying Duchenne's myodistrophy for six years and are personally familiar with all the doctors who have been engaged in it in our country. And they can be counted on the fingers of one hand.

“Our task is to combine doctors from one city, who do not specialize in illnesses, with doctors from the capital, where they still work with a dwarf,” Elena explains. “But we received a refusal in Samara.” We tried very hard to make contact, because everything always depends on the person. I flew to Samara and tried to talk with the head of the pediatric department, but I was told: "I have nothing to talk about with you."

And after a few weeks, Maxim was discharged home. Without the Ivl apparatus. Just with a hole in the throat (the doctors left the tracheostom so that the boy breathed through the tube). They wrote out without any escort, even without a medical card and specific prescriptions, without a schedule for visiting a hospital by doctors. The palliative child was simply sent home to die. And this happens at every step. They do not want to deal with such patients, they are as if they are withdrawn from accounts. ”

Elena Shepard wrote a request to Gennady Gridasov, the Minister of Health of the Samara Region, on the provision of maximum of outbound palliative care. Nothing. I wrote requests to the insurance company for checking the volume and quality of medical care provided. Demanded doctors. But the only visitor - the district pediatrician - did not even know how to approach the boy to listen to him.

“For the second time, the suffocating Maxim on the ambulance enters the SOKB,” Elena recalls, “and the situation is repeated. They do not pay attention to him. Do not follow our advice. The factory of pediatrics takes the child to the hospital, an official from the Samara Ministry of Health promises me to take the case of personal control. And then ... goes on vacation. It was Friday, July 22. "

Illustration: Rita Cherepanova for TD

“I can no longer prove anything, but it seems to me that Maxim was not connected to the Ivl apparatus,” Lyudmila cries. - Although it should not have been removed from the apparatus at all. And then suddenly Kulikov came from vacation - and the child dies. At the same time, the morgue concludes that the child entered the department on August 3, although he entered on July 22. Why? What did the doctors do? How did you fight for his life? What did you do? There are no video cameras in intensive care, the protocol is not underway. What can I prove? Closhers advise me to change my mind: “Are you not afraid that these people are not a small post? Still, you still have children. ” And I don't know what to do. Maybe leave everything, forgive, let it go to itself? But it is impossible to forgive this. ”

They can live

“Samara doctors simply did not do what was needed, and that is why we lost Maxim,” says Elena Shepard. - With proper appeal, it could have been released. Maxim would be at home now.

Throughout the world, patients with a dwarked live up to 30 years old, but we do not have this. And the story of Maxim will be repeated endlessly, until certain standards for the provision of medical care to patients with Duchenna's myodistrophy.

Hospital workers are difficult to blame for anything. They acted according to existing norms. And de jure were right. The trouble is that there are officially no norms and standards for working with such patients. And neither we nor they have nothing to rely on.

Maxim’s story will be repeated endlessly, while there are no standards for the provision of medical care to patients with myodistrophy Dyushenna

We are trying to do everything possible so that the standards are introduced. Or at least in the standards of neurology and pulmonology a separate point prescribed the specifics of working with the wards of our fund and other boys with this ailment. But so far everything rests on the budget - and there are no moves. ”

Having lost Maxim, Lyudmila wants, “so that people from the Fund seek the maintenance of medical protocols, so that the cameras stand in intensive care, and you could at least prove something. And help others with the same children. ”

You can help the little wards of the MoMio Foundation Right today, now - with any regular donation. Even a hundred rubles will become an invaluable contribution. If you imagine that the ruble is like, together we can fulfill the dream of Maxim - and collect a million likes and donations for the fund for it.