“We have one enemy - disease”

The site zdravdeti.ru, created by a mother who lost a child, unites parents and doctors all over Russia

The first entry in her LiveJournal (mama maxima) is dated November 20, 2010. 10 days after the death of his son - 8-month-old Maxim - his mother, Dasha Makarova, will write how she lost him. How in the morning the son did not wake up, like at the arrival of the brigade ...

The first entry in her LiveJournal (mama maxima) is dated November 20, 2010. 10 days after the death of his son - 8-month-old Maxim - his mother, Dasha Makarova, will write how she lost him. How in the morning the son did not wake up, how the ambulance team that arrived did not have children's resuscitation equipment. How the ambulance rushed between the hospitals of Novosibirsk (they were refused everywhere, referring to the instructions according to which the child had to be taken to the hospital to which he was territorially assigned, that is, 60 kilometers from home). How they took him, but they didn’t save him.

One of the last entries for today in her livejournal dated March 26: “I brought the promised thermometers to the children's department of the Iskitim Central District Hospital. In addition to thermometers, two blood pressure monitors with children's cuffs, floor scales for pediatric offices and a catalog so that they think what else they need.

Between these two messages is the history of the creation of the public association "Health for Children" and the website of the same name.

Her first post on LiveJournal is a painful groan, anguish, a detailed step-by-step path to a tragic ending. Splashed out. The next day, she will write that she asks all parents to photograph the terrible conditions in children's hospitals in order to collect a database and demand officials to answer. "My soul was torn out - now I'm not afraid of anything or anyone, I just want to prevent such scenarios and somehow ease the working conditions of our doctors - to achieve new equipment EVERYWHERE, repairs."

Could she have imagined that she would be covered by a wave of responses? I could guess, but the scale impressed me. In the first days alone, she will receive several thousand responses (a total of ten thousand will be typed). But he will also get his own tub of dirt - anonymous, vile. On the same day, they will write to her: “Instead of mourning her son, she surfs the Internet.”

Doctors will react sharply. She will receive a message signed by one of them: “We must have one enemy - the disease, and we must and can fight it. But it turns out that all day long we are struggling with bureaucracy and general devastation. We are tired, we have no strength, many leave everything and go to sell bananas. We all have families and children, we must protect them, feed them. I can tell you for sure - none of the doctors will speak out openly, everyone is afraid for themselves. But we are all very worried and waiting for changes, we hope for you.”

These ten thousand parental cries for help and counter ones - already from doctors and also for help - will leave her no choice.

In the November Runet, Dashin's post about the death of her son, links to which will be posted on the Web by almost hundreds of people, will make her figure not only known, but also accessible. She will leave her phone number, postal address in the public domain and almost immediately take on the role of a dispatcher and guide.

On the first day of the new year, a sobbing man will call her and tell her how his little son has been in a rural hospital for a week with meningitis, there are no improvements, and local doctors refuse to transfer him to the region. Dasha will pick up the phone and knock this transfer out of the inhibited village doctor for several hours, and then with the same fierce pressure - an ambulance for the child. She will achieve and will conscientiously inform her readers about the condition of little Andryusha. Andryusha will be cured.

Then, in the first weeks of her communication with the audience, she will understand that the death of her son is not a tragic accident, but a systemic feature. From the messages sent to her livejournal: “After Lugol (an agent for disinfecting the nasopharynx. - N.Ch.), the child of friends began to suffocate. Stopped breathing. Then the heart. The child's father did artificial respiration and chest compressions before the ambulance arrived. Managed to bring back to life. The ambulance arrived quickly, but they did not approach the child - they found out why the policy was from another city, they found out by phone whether it was possible to hospitalize him. This mess continued until the child's grandfather threatened to take a gun ... "

A documentary series about forcing the system to perform official duties will gather around her LJ not only sympathetic readers and petitioners, but also like-minded people. They will help her organize the first rally, which will take place on December 19 and will bring together more than 200 people in severe frost, which by the standards of the city can be considered an impressive achievement.

Officials will react promptly, which will rather indicate not an unconditional willingness to cooperate with Daria Makarova, but a fear of threatening publicity on a Russian scale. And almost on the same day, the governor's commission will decide that in emergency cases it is possible to hospitalize a child in the nearest hospital, that opening several beds in a pediatric department at a large central hospital does not require any special financial injections or expensive equipment. It could have been done a year ago, or five years ago. I suspect that the fashionable term "optimization" of just this kind implied an interpretation, and not just another cut of budget money.

In short, under the pressure of the public, which showed a special parental obsession, the flywheel of the hardened medical bureaucracy in a single Russian region began to move.

The Children's Federal Ombudsman Astakhov will offer Daria to become his representative in the Northern Federal District. She will agree, bearing in mind that the new format of activities will help to more effectively seek, if not interaction with officials, then at least meetings with them.

December-January of Dasha's LiveJournal is not only a story about destinies, medical stories and total hopelessness in the medical field, but also a systematic analysis of the industry in the region. She will tell her readers in detail how many reanimobiles are in the city and how many are needed; what rates are missing in the pediatric service and how can they be redistributed without damage. Her trips with photo reports to hospitals will not be reduced only to fixing devastation and poverty; new equipment and repair of departments will be described with the same meticulous detail. In fact, Daria will take on the function of an industry manager who will collect a list of needs for hospitals, puzzle officials with them, and take something along with philanthropists. Thermometers in the Iskitim hospital are already her personal initiative.

One of the most important tasks of these months will be the creation of the website of the public movement “Health care for children”. The fact that the site is urgently needed to eliminate the information blockade of parents, Dasha realized not only in the days of her loss. Eugene, the father of a boy with meningitis who called her in his desperation, will tell her that they tried through various channels to find out what to do, tried to get one of the medical officials to listen and make a decision. Failed - the phones were silent (holiday). Those who were able to get through did not respond. One of the readers of her LiveJournal will express a fair consideration in response to this story: Sberbank has a round-the-clock support service, but the Ministry of Health does not, there it’s a question of money, here it’s lives.

One of the main sections of the new site zdravdeti.ru is legal. It describes in detail what the patient and his relatives are entitled to during hospitalization, visiting the clinic, calling an ambulance. The indications, according to which the ambulance team is obliged to offer hospitalization, are detailed. I confess that I read these rules, officially fixed, it should be noted, in industry instructions, with a fair amount of bewilderment. I, like the vast majority of citizens, many times faced with the fact that it is not customary to stand on ceremony with the sick, let alone hear him. The task is to take the patient out of the dialogue more harshly, so as not to interfere.

I will find an explanation on the site: “But in fact, according to the instructions: “When applying for medical care and receiving it, the patient has the right to receive information about his rights and obligations and the state of his health. Naturally, this paragraph of the law deprives medical professionals of the right to say: "My task is to treat, not to tell you about medical rights." Must. And know and tell. In fact, this section of the site undertook to cultivate a different mentality in the patient - not a petitioner for medicine, but a consumer of its services. By the way, doctors who will “surrender” secret information will help Dasha prepare this section. She will say about this mutual responsibility in one interview: “I understand that we should all be on the same side - both doctors and patients, because we are equally interested in the system working properly. Initially, we said to ourselves: we are not fighting against someone, we want to create.”

And in the section "They write to us" you can read stories not only of criminal negligence or indifference, but also of medical dedication. The site still operates on the principle of a public reception - you can send your question, describe the situation and get qualified advice or help very soon.

It so happened that Dasha Makarova became the iconic figure of the Health for Children movement. But without the headquarters of volunteers, she would not have pulled this burden. There are not many of them - in Novosibirsk there are 10 people, and those who support and joined the association are about 10 thousand, among them are lawyers, lawyers, businessmen ...

In the letter I will ask her what has been done during these months. Dasha writes: “A lot - from changing the rules of the ambulance when transporting children around the city of Novosibirsk to the understanding of officials that you can’t be more disgraceful and you need to make some kind of socially useful gestures. We have a lot of socially significant projects, for example, the informatization of society, raising the status of a doctor, supporting parents who have lost children ... a lot, and everything seems to be working out so far.”

To the clarifying question: “What do you consider your greatest achievement during this time?” Dasha will answer: "I was able to live."