Good afternoon!
My name is Lida Moniawa. I work in the children’s hospice “House with a Lighthouse”.
With a beacon because when in the parents’ hospital a doctor visits his office
and says that everything – your child can not be cured anymore,
nothing more can be done, it is very similar to such a storm and the end of the world,
when the earth leaves from under the feet and around is very dark.
And now we really wanted to give our parents some kind of sign and a signal,
that this is not the end, and that there is a place where they can be helped.
Therefore it is called “House with a lighthouse”.
Our hospice started with the story of the boy Zhora.
10 years ago Zhora was in the same way issued
from the Russian Children’s Clinical Hospital.
Doctors told the parents that everything: the treatment options are exhausted,
and Zhora needs to go home,
because in the hospital all the same nothing else can not help,
and at home there will be native toys, native walls, at home parents will sit next to each other.
Zhora left the hospital.
I was then 19 years old, we were volunteers in the Unitary Branch.
We thought that we would visit Zhora at home,
that we will bring him many, many balloons,
we will arrange a holiday with soap bubbles.
I called his mother to discuss all our wonderful ideas,
but there was a very tense voice at the other end of the line,
and Mom ZHory said that they are not at all until the holidays,
that Zhora is bad, he lies, he has very severe pain,
he no longer rises, and no one can help them.
And really there was nobody to help,
because in Moscow there was not yet a children’s hospice,
because from the hospital Zhora had already been discharged and did not want to take back,
because when parents called “03”, the ambulance came,
she turned her whole suitcase full of medicines to her parents,
and there was no morphine.
Parents Zhora two weeks went from one clinic to another,
trying to get him a prescription for morphine,
but nothing happened due to various bureaucratic problems.
Zhora was registered in one place, he lived elsewhere,
and polyclinics could not understand each other,
who should give him an anesthetic medicine.
For two weeks Zhora suffered so much from pain, he was very much excruciated.
Two weeks parents went
on polyclinics, and then Zhora died.
And that day, when he died, a polyclinic called his mother
and said they were ready to give her a prescription for morphine.
We then with friends came to the funeral of Zhora,
They saw how he lay there, all with black lips, bitten from pain,
saw his parents, who were completely killed by this whole situation,
and realized that they were very, very, very ashamed before them,
and that further so to live, if in Moscow children will die from a pain,
if these parents do not have help, it is simply impossible.
And so the idea was born to make a children’s hospice in Moscow,
the first hospice at that time, there were no hospices,
and now, in fact, also no.
We then rented an apartment on Komsomolsky Avenue,
an ordinary three-room apartment,
and arranged there an office of the hospice’s visiting service.
They hired the first doctor, hired the first nurse,
hired a psychologist and began to come to the terminally ill children home,
trying to somehow help, get for them anesthesia.
And a huge number of parents began to contact us in the hospice,
who also needed help.
Every month, we now get 30-40 new calls
from new families in a critical situation who ask them to help.
Literally in a few years the hospice grew very much.
Now we have 500 children in Moscow and the Moscow region,
it’s all incurably sick children,
who do not walk, who breathe through the tubes, eat through tubes,
who need help.
To reach them all,
We had to hire a huge team of doctors and nurses.
Now in the hospice there are already 130 people working.
These are nannies, psychologists, social workers, lawyers, doctors, nurses.
They all come to the children’s home, bring them medical equipment
and bring all the medicine to the child home.
But the hospice began to address not only children with oncology,
but children with a variety of diseases.
Children who were perfectly healthy, but were in a car accident,
and now they are dependent on the device of artificial ventilation of the lungs,
children with very rare genetic syndromes,
when one such child is for the whole of Moscow, and no one really knows how to help him.
Every month our hospice spends 30 million rubles
on consumables, medical equipment for children
and on salaries of doctors and nurses.
The state does not yet help our hospice in any way,
and we collect all the money via Facebook.
Thousands of people donate 100 rubles, 500 rubles each,
thus every month is going to 30 million.
A lot of volunteers help the hospice.
They take the children out on cars,
come home to cook something delicious for them.
And the hospice has become such an incredible story,
when just ordinary people self-organize,
To help those who really need help
and to whom, unfortunately, the state does not yet help.
You probably saw that now all of Moscow is hung up with our advertising:
“If a person can not be cured, this does not mean that he can not be helped.”
But what exactly to help is always a very difficult question.
The main idea of the hospice is,
that we care about the quality of life of a child and the quality of his death.
Quality of life is very, very different.
The child can spend all his life in the intensive care unit.
If a person can not breathe himself
and is dependent on the apparatus of artificial ventilation of the lungs,
he can lie in intensive care a year, two, three.
I know a boy who has been in intensive care for six years now,
he can not be taken home.
Resuscitation means that you see your mother 15 minutes a day, an hour a day,
and if in the city there is a quarantine, then you can not see a whole month.
And next to all the time other people’s nurses, who change every day,
and all in white coats, and around all these tiled walls.
I think it’s all very, very scary.
Therefore, even if we can not cure this child,
we can change the time that is left for him,
so that he spent his usual childhood life.
We can buy him all the necessary medical equipment
and take the child home,
we can teach parents to use all these medical devices,
that they themselves become as doctors and as resuscitation nurses
and would be able to help the child, and would not be dependent on the hospital.
We can buy a child a chair on the control panel,
and then he can drive pigeons in the courtyard, leave from his mother
and generally move independently.
And it becomes a completely different life.
Here, in the main, now leaf through photos from the camp of the children’s hospice.
We take our children out of town and fool around there,
because I really want to have a family with an incurably sick child
would not be turned off from a common life, from society.
We really want parents of children to continue to go to work,
to continue to invite guests to their homes and themselves to go to visit,
that the child, in whatever condition he might be,
would continue to study at school,
that mums continued to do makeup, dress nicely and cook delicious food,
and in general, that the house was cozy, and there was such a happy place,
despite the fact that there someone is seriously ill.
But…
Every year about 100 children die in the hospice.
And we see that children die very differently.
Well, usually all people are very prepared for the birth of children:
go to courses, choose a maternity home, choose a doctor, read books,
think about how this will happen.
But for some reason, we think very little about how we will die
and how our loved ones will die.
And we see that if you do not think about it at all,
then, as a rule, people die in the intensive care unit alone,
under the apparatus of artificial ventilation of the lungs.
Usually the child becomes ill, parents call “03”
an ambulance crew arrives, takes the child away, my mother is not allowed in there,
the child is connected to the ventilator, that is, a tube is inserted into the throat,
and the lungs are inflated for so long, until the heart stops.
This can take a very, very long time.
And for us this is a very big question, which is prolonged in this way:
the days of the child’s life are prolonged or are the days of suffering prolonged?
We always talk with parents in the hospice about the fact that the ventilator –
this is not an obligatory stage before death, which can be chosen in a different way,
that you can stay at home, you can give up resuscitation,
you can refuse to artificially prolong life.
And parents always have such a choice:
what they want for themselves, for their family, for their child.
They will fight for life to the end by any means,
even when the child can not be cured?
Will they prolong his condition to him or take care of the quality of life,
that every day would pass happily, that every day would be at home with toys,
with pets, with school, with clowns, with games,
and that every day would be happy?
That such a choice would be for families,
so that they could stay at home and not go to resuscitation,
Hospices are very necessary, because it is impossible without support.
It is very important that the children leave without pain, without suffering, so that they would have help.
For this, hospices are needed.
And the hospices are needed so that we all think about how we ourselves will die,
because it’s still our choice, our responsibility,
then, how our loved ones will die.
That’s all I wanted to say. Thank you.
(Applause)
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