Pediatrician pediatric palliative care service: Any person, no matter how he was born, we all need

“Rhinitis can anyone cure”. And here it is very difficult to find a doctor, but the help from our parents and patients also needed. The nurse brought diapers, the psychologist listened to them – and the parents got the feeling that they need someone, they are not alone. Brought me here and I felt that I had to be here.” Natalia kuksina, student of the faculty of soil science, Moscow state University, as a volunteer went to children with cancer. And then he realized that he wanted to be a doctor. Today she is a pediatrician, pediatric palliative care service “Mercy”. 13 October – the world day of hospices and palliative care.

Natalia Kuksina

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To cheer the sick girl, from the rack for droppers we did palm trees

All are surprised when they find out that the first education I am a soil scientist. Immediately after graduation I entered the Moscow state University faculty of soil science – is not very meaningful, and in the third year, I realized that here I’m useless. We drove to practice, we saw abandoned farms, plows that were scattered everywhere. And I always wanted to bring some benefit.

And then I began to settle in different places to work, to understand where I’m curious. But without education, but as a cleaner and nanny never took, I worked as a nurse in two hospitals and in boarding school, as well as by courier. And one day, waiting for its recipient, flipping through a magazine and saw an ad ‘ service for terminally ill children with cancer looking for volunteers. It was in 1997.

The service was created head of the clinic of Oncology center them. Blokhin Yevgeniya Ivanovna Moiseenko. She saw how the children were afraid of the local doctors did not know what to do, couldn’t numb. There was a puzzle, and I realized that I want to go there. Invited girlfriend. And the place it turned out that besides us no one responded. Several times a week we went to the family, brought diapers, care products, were just friends.

One day we were asked to come to the office: the girl Luba four year old with a sarcoma no one spoke, and the doctors thought that we will be able to find some approach and then the treatment will go better. We just might come up with – got the dolls, played the performances from the rack for droppers did palm, but she sat with a straight face. Only her dad asked us: “You just please come back! When you leave, she only talks about you”. And it so happened that my friend – our main merry got sick and I had to go alone. And dad asked to go to the store, and I was very uncomfortable. But what if I threw any ball, and she first laughed. From the time barrier in communication.

Then we lost touch, didn’t watch her fate, and after a couple of years on the celebration of children who have recovered from cancer, we suddenly fits a woman: “Girls, do you remember me? I am a mother of Luba”. Once clicked, and then to us bring the lube, we growth and fully recovered! And standing on two legs! At that moment I already went to medical school and took this meeting as a good sign.

Against this background, my work in palliative care service, I realized that I wanted to become a doctor. First it was my idealistic dream to be an oncologist and combat cancer, but of course, you can only think in 18 years. My husband supported, mother has put a condition “if you are going anywhere but MSU, you have to finish and get a diploma, then I will help you with paying Tutors”. I did not from the first attempt, and my senior year at MSU coincided with the first year of study in the medical benefit, the universities were in a few metro stops from each other, and I tried to make it there, but still everywhere was tails.

Heard the word “palliative” and wanted to refuse, but saw in the eyes of the people some light and meaning

Six years later I retired from the service: when my two sons were born, I became too to pass through a psychologically and could not stand. All the time imagined, what my mom feels, which a child dies. Realized that want to treat children to get better. And just finished medical school, started residency in Pediatrics and a job as a doctor in the house closest to the children’s clinic and worked there for seven years.

I had a very good relationship with the patients and parents. Children grow up in the eyes when I went on the site, someone was treated to a jam, someone tavern. There was a feeling that living in the village, although an ordinary Moscow district – of Timiryazevsky.

But unfortunately, the possibility of somewhere to grow in the clinic is not seen, and wanted to grow further, and the leadership was replaced, not very good relationship with him. Posted a summary on a special website.

I have long wanted to work in the Orthodox group. I thought of the monastery, believers will be different, wanted to have a more human relationship, and probably for my spiritual path to work in such a place would be useful. But in any stopgap measure I did not intend to return.

And one day the phone rang. The doctor called away from the Children’s palliative service “Mercy”, but when I heard the word “palliative” from the inside “no, never again!”. The invitation to come to talk said “I’ll think about it and call you back”, but call back, of course, was not going to. When a person does not want to go to work in a palliative – it is not surprising, and the idea she had to understand. But called back the second time: “Well, you think? Can you still come?”.

I think a very polite woman, uncomfortable, come, and refuse, looking into his eyes. We sat with her and the chief physician talked to and don’t know what happened to me during the conversation, but in the end, I agreed. I thought I saw in the eyes of the people some light and meaning and for some reason decided to stay here. Several events in his life as “a miracle” does not explain can.

Photo: Eric Daelan

The nurse brought diapers, drank tea and parents have a feeling that they need someone

Our parents and patients is one of the most vulnerable categories of people. Children health problems, mainly from us patients with pathology of the nervous system, cerebral palsy, children with organic lesions of the brain, consequences of infection, severe traumatic brain injury, almost completely immobilized, often with intellectual disabilities… Parents don’t always realize how they are tired and psychologically gutted. People years of almost no sleep. The child’s seizures, and the mother lying next to me and all the time listening. And it’s not days and years. This is a very difficult traumatic situation.

Often the mother is the one, often for the opportunity to help people in Moscow from the regions to sell their homes there, changing it for the worst conditions here, live is not clear where and how, and most importantly, losing the support of loved ones and remain with the child all alone. We have a lot of wards. And when you arrive our staff, these meetings are for them and sometimes the only signal from the outside world. The nurse brought diapers, drank tea, listened to their psychologist and parents have a feeling that they need someone, they are not alone.

Sometimes mom tells how she got pregnant, the baby got sick in three months and starts to cry, you know how it is difficult for her: ten years have passed, and it is for all these years, the situation has not digested… Or sometimes a young married couple, the first desired pregnancy, I thought that the beginning of the path, and born a heavy baby.

I once said the phrase: “common Cold, anyone can cure.” And I realized that because the clinic was completely interchangeable. Look, now my former patients, another doctor and everything is fine. And here, in Children’s palliative mobile “Charity”, it is very difficult to find a doctor, but the help that they need.

To parents faced with a choice: to introduce the child to the ventilator or to give him the opportunity to leave

A separate category – these children with spinal muscular atrophy. Most often they are completely intact intellect, but gradually they have lost muscle strength, motor skills, and at some point they completely obezdwijivanie, violations of swallowing and breathing. Here is promassiruyte disease… it flows depending on the type differently, and the hardest is the 1st type. As a rule, if not connected to the ventilator, to such children do not survive.

One day we took the boy with SMA, he was 4.5 months. He quickly grew weaker day after day, could hardly eat, started breathing disorders. And to parents in such moments, faced with a choice: connect to the ventilator, and the child will live, but completely immobilized, or give him the opportunity to live, how many come, and go…

We as doctors explain how you can help in one, and in another case, telling what the forecast. Now there are portable ventilators, they allow you to go out, but still mom or someone close to you needs to devote himself fully to the child machine must be constantly monitored. This is actually a Department of intensive care at home.

But not always the parents, when the child begins to move away, gasping for breath, they often can not withstand the suffering and still call the ambulance, and the ambulance takes her to the intensive care unit.

And that boy’s parents called an ambulance, while preparing for another choice. He lived on a ventilator for several years, even learned to speak. It so happened that the parents left him for a moment without apparatus, such children can live 15-20 minutes for the residual breath, and at that moment, as he cut down fell asleep sitting with a child. And the son left. The feeling that he found the opportunity to leave. Adolescents with SMA who have intact intelligence, often say they do not want to live on the unit. And our task is to help them off properly, without pain. Then it will be a relief for everyone.

Feel the deep, in which the person is, and cry along with him

Of course the children also play and enjoy. Pat them on the head, talking. React even it is not speech. By the way, mom understand the language of their children. They pay for some nuances I can understand, now he was cold, and now tired or hungry. I can’t do that.

Asking parents details what changes in condition occurred, examine the child. Someone correct regimen of drugs to someone and then just giving advice to some specialists, this need physical therapy, this corset.

Difficult topic, when we see the need for it, and the parents do not. Let’s say it’s a teenager, and at age 14 he weighs 14 pounds. But for mom it’s not a problem, she’s used to it. And we must be convinced that a child should be fed differently or put a gastrostomy tube.

Generally the most difficult for our parents to accept that the child is palliative. As doctors, we see that rehabilitation potential had not. He will never go and will not sit, and often complications of the disease are also growing along with it. But parents are looking for any loopholes, carry on endless rehabilitation centers, suffer, begin to live in the hospitals, wives forget husbands, families often begin to fall apart… my Mom always ask: “how was it? Better?” And I see no better and sometimes worse, but I can’t say that to Mama. Someone I may not yet…

And, of course, sometimes we cry. We are the same people. It’s always empathy, frequently blaming themselves: what if my child did that happen? Feel the deep, in which the person is, and cry along with him.

But my job allowed to deal with death and to accept it. To the question “why are children being born?” can be a lifetime to answer. I think any person, no matter how he was born here. Necessary for all of us.

Boy with cerebral palsy said, “Call the kids!”. My son played with him

My sons 15 and 12 years old. With a lot of them talking about it and believe that they are necessary and useful to know and to see these children. Sometimes I take them to the celebrations of our players on the tour.

I remember the horror in the eyes of his youngest child when he met his his classmate in a wheelchair. Apparently, at this point, he tried to imagine how he feels, and this work was reflected on his face.

This year he helped as a volunteer at our camp for families. At first I was a little apprehensive, but it turned out that all the children made a connection and his company preferred adult psychologists and assistants. One boy with cerebral palsy, but with intact intellect, all the time saying, “Bring the kids!”. And Illya rolled him in a wheelchair, played badminton. He’s my youngest, has no experience of caring for someone, and here was the first time the elder saw that someone needed it, felt its usefulness – it’s a very pleasant feeling. Meekly the boy went everywhere and was happy. I think he has become more compassionate, sympathetic to others ‘ distress.

Felt I need to be here. And I take a lot more than I give

I work in pediatric palliative care service for four years and in this area I definitely have room for growth. But the main thing – to have a little more attitude – a little less for ourselves, a little more – as is necessary – to others. Now, there are many medicine, but there are those where few people go, and help is needed. One of them is palliative.

It so happened that I haven municipal Deputy – capital repairs, parks, benches, trash. As a palliative is not sought and an MP, it struck me. During my adolescence sitting itching find their usefulness. I don’t think it had any impact on my fate, but remember, in my early childhood I found a dove, whose feet were tangled with a thread, she crashed into them, he couldn’t walk, kept falling. I sat crying, gnawed on these threads, trying to cut them with a key, but was unable to unravel. When you’re faced with someone’s pain, to the helplessness of his own, but I want to help…

Perhaps, man lives to learn to love, to understand God, themselves, to grow, to become better and to make life around them a little brighter and warmer by using all these opportunities and talents. Happened to be in the hospital, I realized my.

Don’t know what will happen in a year or two. Are we here to learn to live one day. And the parents of children that can suddenly leave, and we are living on the sponsorship money that might end up. Live and work as God wills. Just learn to accept things that… well, not up to me. Brought me here and I felt that I had to be here. This spiritual path. And I am here learning every day – take a lot more than I give.

Children’s palliative mobile service – a joint project of the Orthodox service of assistance “Mercy” and the Martha and Mary convent. Here get help about 90 families with terminally ill children. The doctors are doing everything possible to alleviate the suffering of children, psychologists communicate with children and parents. Nurses of the palliative care service arrange “a social respite” for mothers of seriously ill children so they can at least briefly to have the baby.

Children’s palliative mobile service “Mercy” exists on donations of caring people. To help ward of the palliative care service here.

Produced Hope Prokhorov

Photographs from the archives of pediatric palliative mobile service “Mercy”

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