My son died yesterday

2024 Author: Seth Attwood | [email protected]. Last modified: 2023-12-16 15:55

Yesterday my son died, he was 8, 5 months old. It happened exactly 5 years ago. And today I would like to tell you how sick we are.

After Maxim's death, I lost the meaning of life. I didn’t understand what was happening, I didn’t know what time of day, my body existed, but I was not in it. This went on for several days, until I splashed out some of my pain on paper - until I wrote my story, which I could not finish writing to the end. I read the story at the funeral on November 16, and my relatives asked to publish it.

Since then, you have known me. A huge story has happened, a lot of things have been done, but the main thing has not been done - I could not break the callousness and indifference in those who inform their parents about the death of their children.

As it was with me:

Part 1. Ambulance

November 10, 2010, 10:00

On the morning of November 10, at about 10 am I woke up next to my son, he snored nicely, calmly and peacefully. After admiring my miracle, I decided to make coffee, I thought - this is what a nice son, I decided to give my mother a good morning.

After about 10 minutes I went up to him again, shook him to wake him up … and froze - the whole little body was like a cotton - a lifeless sluggish body. A few seconds of stupor, then an attempt to remember how to call an ambulance from a cell phone (it turned out - 033), then a thought flashed - a coma. Pulling myself together, I feverishly realize that he is pink, breathes evenly, which means there is a chance. I throw all my things into the bag, and the doctors are already on the doorstep.

A quick examination, a decision - we are taking urgently to the nearest hospital. The ambulance doctor says that you need to drive to Mochische - 60 kilometers, to the other end of the city, along the only road clogged with traffic jams. According to rough estimates - about 2-3 hours of driving. The paramedic of the ambulance says that we may not be in time - we need to look for a closer option, but according to the laws of our country, they have no right to bring them to the nearest clinic - only to the one we belong to (in Mochishche).

I am in shock, I try to pull myself together and call all the doctors whom we have had in a small life (8 months). Refusals. I called a neurologist I knew: he had no right and offered to speak with the chief medical officer (who is this?). Nobody knows how to contact him, either. I called the head physician of the regional maternity hospital (he received Maksimka), I beg, I beg, he agrees to help. He calls back after 2 minutes - no, the chief medical officer refused and quotes: "Take the child to Mochische, let the transfer be made out there in the emergency room and then to us." I shout that he is in a coma, that we will not take him one way, not that there and back…. "Alas, it hurts, but I cannot help you …"

We leave Akademgorodok, stand at the turn to the Meshalkin clinic. The ambulance doctor calls on the radio:

- Adopt an urgent baby, a boy of 8 months, coma.

Refusal. I dial to all the doctors I know at this clinic - someone forgot their cell phone at home, someone is on vacation, someone does not pick up the phone. Let's go further …

Traffic jams … traffic lights …

11:45

- Breathing?

- Breathes … I listen to him (doctor with a phonendoscope, keeps his hand on the pulse)

11:55 … Doesn't breathe! Stop. Intubating!

A young ambulance doctor is trying to intubate the baby. The ambulance is not equipped - there is nothing. Miraculously, it turned out to insert a tube, connect the pump and pump … Small lips turn pink. They are trying to adjust the ventilator - it does not work for small lung volumes.

Do heart massage. There is no defibrillator in the car, no norepinephrine.

We fly with flashing lights on the BSh. I raise my head - there is a mess of cars, sleet and mud on the road. We fly in the opposite lane, all lanes in the city are occupied.

We are approaching the required hospital.

- The third nursery, adopted …

- Code 46, prepare intensive care!

I look at the whitening hand of my son, my head is noisy, my heart is pounding. I pray, I ask God to help, if only they will take us, I believe that they will help us. I heard that there are good doctors in the 3rd children's room. I hope for a miracle. I whisper - hold on, baby, hold on, you are so strong with me!

I raise my eyes to the doctor - she whispers, "Oh, we won't, we won't." A young doctor pulls her back - “We'll take you! He puffs, I can feel. " We fly into Red, rush through the stream of cars. Some minibus climbs into an empty lane right in front of our car, the driver desperately honks his horns, goes around him and we drive along an icy hill into the hospital courtyard.

Behind a thin paneled door is an eerie staircase, tattered walls, cobwebs, pipes sticking out of the walls. Repairs have not been done here for 20 years. It's cold.

The next door is resuscitation, everyone is not allowed to enter. The doctors picked up the baby, carried away, only the ambulance nurse remained with me to fill out the card. I don’t remember any questions, I don’t remember how I signed the papers. In 40-50 minutes the ambulance doctors come out - they have stabilized, there is a chance. I grab the sleeve - can I go to him? Will he live?

They shake their heads - ask the local doctors, I'm alive, how and what's next - all the questions are for them, we need to go, we have other challenges. I wait, I bite my lip, I pray. The ambulance doctors left - they did everything they could in those inhuman conditions. Thanks to them, they gave us a chance, they gave us hope.

We were lucky that the only free ambulance team were professionals - cardiologists.

Part 2. Resuscitation

Another hour or two has passed - there is no feeling of time, I rush up the staircase. “Come on, we need to take a history,” a very young doctor looks at me with compassion. I tell her everything, show all our cards, examinations. There is hope in their souls - all this will help them, they will definitely figure it out, find a reason for how to save him.

- Are you mom?

- Yes … - I look at an elderly short lady in fashionable glasses, in her eyes condemnation.

- Tell quickly - what happened with you.

I tell the whole story again, I look at it, I ask: what's wrong with him? Will he survive?

- I can't say anything, wait …

A few more hours of tossing down the dirty staircase. A gloomy unshaven man comes out - this is the chief resuscitator Vladimir Arkadyevich:

- Your child is in a very serious condition, how long has he been in a coma?

“I don’t know, I woke up in the morning, but he didn’t …

- What time it was all - tell me.

I tell everything again from the very morning, I ask him to help, I beg him to let him go to see my son - no, it’s impossible, now it’s impossible.

- Tomorrow morning we will do CT … if we do.

- Why not now? - my voice trembles - how is it "if"?

- Now we need to stabilize, observe, tomorrow at 10 am we will take pictures, then we'll see.

- When can I see him?

- Reception hours from 16:30. Two minutes.

Goes out the door. I measure the stairs with my steps, I count the tiles - 33 yellow, some more red.

After a while the nurse comes out, I rush to her - can I go to my son? Please, I beg …

- No, only after obtaining permission from a doctor - contact him.

- Who is the doctor? A man with glasses?

- Yes, Vladimir Arkadyevich …

- But he said that it is impossible!

- So it will be so, do not interfere, wait.

It's already evening, sleet outside the window. People are constantly scurrying around, no sterility. Here is a huge aunt with two bags, all like a snowman, pieces of wet mud fall off her boots. Goes straight to the intensive care unit - she is one of the nurses, she took over.

The resuscitator comes out again - can I see my son?

- Yes, walk for 1 minute.

- Thank you, thank you, thank you …. thank you endlessly.

I walk on wadded feet on the old dirty linoleum, I enter the ward - a spacious room that has not been renovated since Soviet times, large windows are sealed with blankets and draped with gray sheets. There are broken tiles on the floor, two beds, on the right one is my baby.

- Can I touch him by the handle?

… silence, then grunted - Only carefully.

I gently touch the little hand. His fingers are a little warm, cut and covered in blood - they took a lot of tests, he needed a lot of blood. There is a lump in my throat..

- Son, this is mom … mom came … son, you are so strong, you fight and everything will be fine! You just come to your senses, we will immediately transfer you to a good hospital, there you will be cured and we will go home to your Mishenka and Karasik, they miss you very much.

Tears choke me, I can't speak … The nurse demands that I leave. I bend over to the baby and kiss him on the hot forehead, whisper to him - I am with you, I am always with you, I love you very much.

I go out into the corridor, before my eyes there is a terrible picture - my baby is in tubes - there are two tubes in the nose, one more in the mouth, the skin around is tightened with a band-aid. There is a catheter in the subclavian vein, a bruise has spread around - a large purple spot. On the left leg, some kind of sensor is fixed to the finger, another one on the left handle. There are some sensors stuck on my chest. Next to the bed there is a ventilator (the only mobile device in the hospital that crawls through the door of the intensive care unit), a heart rate monitor, droppers … I can’t believe - all this is a terrible dream, this is a nightmare, I’ll wake up now, and Maksimka is next to me, all the glorious pink-cheeked toddler.

My brother and uncle came to support me, to be with me. Seeing this staircase, the general condition of the hospital, listening to the doctors barking at me, we were shocked. My husband is about to fly in, they followed him, again measuring the stairs with my steps.

The resuscitator on duty was replaced, instead of a sullen unshaven man, a middle-aged woman, tortured by life, came - Natalya Anatolyevna. She is the only doctor who treated us humanly, she probably understood that Maksimka was not long left, she regretted it.

- You must go home, you cannot spend the night here, leave.

- Natalya Anatolyevna, please, I beg you, can I call to clarify the condition?

- Yes, of course, here's the phone - points to the number scribbled with a ballpoint pen on multiforme. Calls are allowed until 22:00

- Thank you, can I call several times? I understand that I cannot disturb you often, but I must know what is wrong with him, how is he … Please!

- Okay, I'll pick up the phone until one in the morning, but not later, understand me too.

- Yes, yes, of course, thank you … I wanted to ask you about one more thing - I know that you do not call your relatives, but I beg you - dial me, if Maksyushka's condition changes - he regains consciousness or … I bite my lip, I cannot say that my son will die!

- Okay, - sighs and leaves.

We go with my husband to the car. My brother tries to throw a jacket over me, says that I will freeze, and I must be strong and hold on - Maxim needs my strength. Nearby is my husband, in about the same state as me, but he has not yet realized, has not fully realized what has happened.

-Yes?!

- This is Maksim Maksimov's mom, how is he?

- Without changes…

11th of November

Somehow we survived the night, I call in the morning.

- Hello?

- Natalya Anatolyevna? This is Maxim Maximov's mom …

- No changes, the pressure dropped at night, stabilized, - sighs.

- Can we come? We really want to see him for a minute, please?

Sighs again - come …

Straight along the corridor, to the left and down to the basement - there is a wardrobe and bathrobes. Ceilings are 1.5 meters high, sewage and water supply pipes hang, at the end of the corridor there is a kitchen with typical smells of a Soviet canteen. In exchange for outerwear we get numbers and filthy dressing gowns…. We spent the whole day next to the intensive care unit.

November 12

On the morning of November 12, my husband and I were invited to a consultation, they talked to us, but we were not allowed to see our son after the consultation, which took place in the room next to the intensive care unit.

I was literally taken out of the department by the arms. Having put us out the door, we were told that the reception hours were as usual, go away…. but we didn’t leave.

We stood in front of the door, listening to the grumbling of the medical staff that we were interfering with everyone. I remember that feeling of a vacuum - no pain, no suffering, just a vacuum. And I'm in it … just waiting, like a pupated caterpillar.

2 hours passed, he came out to us in intensive care, how he came out … he looked out from behind the door and said:

- Leave here, you have nothing to do here, your son is dead.

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? …

- Leave, you disturb the others.

- But can you see him? Say goodbye!

- Get the body from the morgue and say goodbye!

And locked the door.

And then the first memory lapse - I don't remember what exactly happened, but they say I kicked the intensive care door with my feet and shouted to let me see my son, that I would not leave until I saw him.

The door opened and I was severely reprimanded, they promised to call security and force me out of the hospital.

I don't know how, but I persuaded the doctor to take us to Maksyusha.

Reanimation room. Old Soviet tiles, a shabby leatherette couch with a parcel on it. I go up and am afraid to look the bundle in the face. My husband hugs me … but we don't cry. We just don't believe. There was no greater sense of surrealism in my life.

Someone from the intensive care unit is standing next to us and gives commands in a stern voice:

- Do not touch! Don't come close!

This voice brings me back to reality, and the thought slips through my head: “I will never forget this. This is some kind of nightmare. I turn to the voice and ask:

- Can I kiss him?

- Not!

Just understand - a mother CANNOT kiss her son. You can't and that's it. Not allowed. In their SICK system, where everything is upside down, where human life does not mean anything, where there is nothing human, there is no kindness and compassion, in their world it is forbidden for mothers to kiss a child, and even more so - to take it in her arms.

This is our society … a significant part of it. This is the electorate. These are the people…. a sick person following soulless instructions.

In our country, parents CANNOT visit their children in intensive care (my husband and I were given 2 (!!!) minutes once a day), CANNOT say goodbye to a deceased child, CANNOT pick him up.

A lot of things are not allowed. 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 the people working within the system were not born that way, but became - thanks to the system.

Woe to grieve, but to do business

I know for sure that if then we were treated like a human being, if our loss and our grief were treated with care, if they were allowed to say goodbye to my son and let him go, then I would not have engaged in charity, politics and change for these five years health care systems.

When, on the day of the funeral, my mother went to pick up her son's body from the morgue, I waited at home. I was shaking, I was very afraid to see my dead son. Then I took my laptop and sat down to write. What was in my head, I wrote about the last two days of Maksyusha's life.

I read my text to relatives and friends at the commemoration. They said: people need to know about this nightmare, it needs to be spread. And I started LJ - before that I didn't have one. There was a funeral on November 16, and this story was published on the 18th.

Many of my friends, including journalists, spread the link, it quickly spread to the media, and the next morning I received a call from Echo Moskvy. Letters began to arrive in which people offered to unite: let's do something, we also have children, we are also afraid for them.

On November 19, residents of Akademgorodok (the Novosibirsk microdistrict where I live) gathered in my friend's office and created an informal public association "Health care for children!", then the charitable foundation of the same name. Thousands of people have joined us.

Thanks to the support of people who read my story, we held a rally in Novosibirsk, then met with Pavel Astakhov. I told him everything how it was. He said: “The doctors did their best, but under these conditions the child could not be saved. What do you want?" - "So that it does not happen again." - "What are you ready to do for this?" - "Anything. I’m not afraid of the war with the Ministry of Health”. He said that the only way he can help me is to give me "crusts". So I became his plenipotentiary in Novosibirsk. It was just a management decision. The status of Astakhov's plenipotentiary helped a lot to establish contact with the mayor's office of Novosibirsk and with the regional Ministry of Health. They were obliged to communicate with me - this is the main thing. I even ran for mayor, but I was not registered.

We have established excellent contact with the regional Ministry of Health. They saw that the work of the fund was effective and they invited me as a “freelance advisor”.

Since then we have succeeded in:

- to achieve transparent regulations for admitting parents to children's intensive care units in Novosibirsk - there is a hot line, - construction of ambulance substations, - purchases of 13 reanimation vehicles (they were not at all at the time of his son's death in 2010), - opening of the ONLY sanatorium in the Russian Federation for children with genetic pathologies and orphan diseases, - repair and equipping of ALL children's intensive care units in the city, purchase of a tomograph at a children's neurosurgical center, - opening at the expense of the fund of five playrooms in children's hospitals, five children's libraries in hospitals, - equipment of a sensory room in a neurological children's center, - opening of a rehabilitation center for children with neurological pathologies.

In addition, reminders for parents on health issues have been created:

1. Rules for treatment and hospitalization in hospitals,
2. Rules for calling an ambulance and the rules for its work with children,
3. Rules for obtaining subsidized medicines,
4. Rules for obtaining HTMP in the following areas: cardiac surgery, orthopedics and traumatology, ophthalmology, transpoanthology (all for children),
5. Instructions for obtaining a referral for spa treatment at the expense of the municipality budget,
6. The actions of the parents if the child is admitted to intensive care,
7. The actions of the parents if the child has been diagnosed with oncology.

With the support of the fund, our local companies deliver clean drinking water for FREE to 4 children's hospitals! This is the "Water - Life" project.

With the support of the fund, a social action "Pass the ambulance" was launched.

The Foundation has created the project "Hospital - not from the word pain" - the artists of the city painted the walls in the admission rooms and in some departments of children's hospitals.

With the help of the foundation, we held matinees in children's hospitals - in all hospitals of the city - the Little Joy project. On New Year's Day and June 1, all children (8 hospitals, more than 1000 small patients) are congratulated by artists of local theaters, children receive gifts.