In this article we will share the story of an extremely brave woman who, after the painful loss of a child, nevertheless decided to tell the world about her. Moreover, all these five years after the tragedy, Daria has been struggling with the health care system for admitting children to reanimation and ensuring that the children are given adequate and timely assistance that complies with international standards of medicine.
Daria Makarova published this story on her Facebook page, we bring her story verbatim.
Today, my son died, he was 8.5 months. It happened exactly 5 years ago.
And today I would like to tell you how sick we are.
After the death of Maxim, I lost the meaning of life. I did not understand what was happening, did not know what time of day, my body existed, but I was not in it. This went on for several days, until I threw out part of my pain on paper — until I wrote my story, which I could not finish writing. I read the story at the funeral - November 16, and my relatives asked him to publish it.
Since then, you know me. A great story happened, a lot of things were done, but the main thing wasn’t done - I couldn’t break the callousness and indifference of those who tell their parents about the death of children.
Half a year before Maksyushi’s death, my half-sister lost her son (fetal death the day before the birth), and she told me HOW in Europe they treat parents in this case. I was struck by the sensitivity, tact and careful attitude of health workers.
But it is they ... they have special rooms in hospitals where parents can change a baby, shake him in their arms for the last time, KISS their child ... they can let him go.
The format of this relationship is set by the international fund SANDS (I recommend to google it), in Russia there are none.
As was with me:
On the morning of November 12, my husband and I were invited by 12:00 to a consultation, they talked with us and hung noodles on our ears ... but we were not allowed to see our son after a consultation that was held in the next room from the intensive care unit. I was literally under the arms taken out of the department. Putting us out the door, we were told that the reception hours were as usual, go away .... but we did not leave.
We stood in front of the door, listening to the nurses of medical staff that we interfere with everything.I remember that feeling of vacuum - neither pain, nor suffering, just a vacuum. And I'm in it ... just waiting, like a pupated caterpillar. 2 hours passed, the head of the resuscitation department came out to us ... well, as it came out ... he looked out from the door and said:
- leave here, you have nothing to do here, your son has died.
And that's all. And the point.
I came out of my stupor and heard my voice from afar:
- but how ...? ... you said ... the doctors saw him ... why did he die? ... how is it possible ?!
- leave, you disturb the rest.
- but can you see him? Say goodbye at least ?!
- get the body from the morgue and say goodbye!
And shut the door on the lock.
And then the first failure in memory - I do not remember what exactly happened, but they say that I kicked the door of the resuscitation with my feet and screamed that they would let me go to my son that I would not leave until I saw him.
The door opened and I was severely reprimanded, they promised to call the security and remove me from the hospital by force.
I do not know how, but I persuaded the doctor to take us to Maxusha.
Reanimation room. An old Soviet tile, a shabby dermantine couch, on it lies a bundle. I walk up on cotton legs and am afraid to look at the bundle in the face. Husband hugs me ... but we do not cry. We just do not believe. There was no greater sense of surrealism in my life.
Near us is one of the resuscitation staff and issues the commands in a strict voice:
- Do not touch! Close not to approach!
This voice brings me back to reality and the thought slips into my head: "I will never forget this. It's some kind of nightmare." I turn to the voice and ask:
- and you can kiss him?
You see, it is IMPOSSIBLE for mothers to kiss their son. It is impossible and that's it. Not allowed. In their SICK system of coordinates, where everything is upside down, where human life means nothing, there is nothing human, there is no kindness and compassion, in their mother’s world it is forbidden to kiss the child, and even more so - to hold her hands.
This is our society ... its significant part. This is the electorate. These are the people .... sick, soulless, stupidly following instructions, invented by nonhumans.
In our country it is IMPOSSIBLE for parents to visit children in intensive care (my husband and I were given 2 (!!!) minutes once a day), it is IMPOSSIBLE to say goodbye to the dead child, it is IMPOSSIBLE to pick him up.
A lot of things can not. In retrospect of the last 55 hours of my Maxim’s life, I can say that the attitude towards us is bestial. And it’s scary that people working inside the system were not born that way, but became, thanks to the system. The rules and regulations are written by some fascist robots.
And, I know for sure that if we were treated humanly then, if our loss and our grief were treated carefully, if we were allowed to say goodbye to my son and let him go, then I would not become involved in charity and politics for five years and changing the health care system.
For five years I worked for free, helping parents of young patients, forcing the system to work.