Cut-over-peeled

The history of the mountain, which was operated on in London, because in Russia they do not do such operations, and adopted in Moscow

Help the back of Bifida help

Until eight years, the mountains lay in a boarding school, looking at the ceiling. They refused him immediately after birth, hearing a terrible diagnosis of Spina Bifida. And yet, a year ago, the mountain was performed, then he had a mother, and now he knows how to read and write and even goes to school. Now the mountain and his mother are helped by the Step Step Foundation.

***

We stood on the steps of the Spartak cinema in Voronezh, and Panyushkin said: “I still need to return here, I want to look for children in their boarding schools with a diagnosis of Spina Bifida to enter them into the program“ take a step ”. I felt terribly, monstrously insulting. Although in fact there was already nothing to be offended.

Fatima and mountains photo: Anna Ivantsova for TD

I myself got a diagnosis of Spina Bifida under strange circumstances. Because of the stupid green plastic pelvis. It was on the day when the first private, tiny earned in Moscow-for 22 children-the Holy Sofia orphanage for children with severe multiple developmental disabilities. The children were brought from a large state boarding school, from the most difficult department where they lay in beds - who five years old, who are ten years old, and who were all 16. We fed them, walked, walked around the house with them (as they all immediately began to call it), then it was time to bathe all before bedtime, and I got into the car, drove to IKEA and bought a green plastic pelvis.

"Take me back to the house, I thought you were normal, and you are burning bonfires!"

By the time the children moved to the house, I already knew many of them. With an eight -year -old boy, the mountain was completely friends at all. We went with him to classes at the center of medical pedagogy, walked around the university metro, were at the zoo, went to the Christmas tree.

The mountain has absolutely preserved intelligence - while he lived in a group where two more children spoke in addition to him. And the incredible charisma - he is alive, bright, warm, remembers everyone in the names in a second, he is interested in everything. At the same time, the mountain did not have everyday life knowledge at all. He licked the ice cream: "Do you want to ditch me, it is icy!" I saw the lanterns in the evening: "They will not collapse?" I saw gas at my house in the kitchen: “Take me back to the house, I thought you were normal, and you are burning bonfires!”

The mountains drove in a wheelchair, one leg was paralyzed, the other was very short, stuck to the side. He also had a rather large head, so much so that it was striking, all the hats were not enough for him-I thought it was a hydrocephalus or some of its consequences. I knew nothing more about his diagnoses.

Clockwise: mountains during a trip to the shopping center; Mountains and Fatima; Mountains in his room; Mountains and Fatima Photo: Anna Ivantsova for TD

So, when I brought the green pelvis to the house and announced the mountain that we will now take a real bath with foam, I just did not know what I was doing. The mountains undressed before swimming, I saw with horror that it was not childish, but a huge diaper for adults, he was literally packed in it to armpits. I unfastened Velcro, smelled in urine, feces, terrible pink scars became visible - on the lower back, on my stomach. All this looked as if a grenade once exploded at the mountain on his knees. “You are more careful with me, Verochka, I’m a disabled person, an orphan, all the cut-perepret,” the mountains suddenly yelled. It is good that by that time I already knew about this manner of it - to talk with words and with the intonations of younger medical personnel from the boarding school. Then I asked that with the mountain, they told me that he had Spina Bifida.

All this looked like a grenade once exploded at the mountain on the mountain

I well remember that I was driving in the car and thought how it could have happened that so many misfortunes and diseases fell on one little boy: this terrible Spina Bifida, and paralyzed legs, and practically absent urethics, and hydrocephalus, and orphans.

Fatima photo: Anna Ivantsova for TD

At home, I first began to look for everything about Spina Bifida on the Internet. On Wikipedia it was written that this is an innate syndrome, a failure in the laying of embryo systems. The spine is split, the spinal cord seems to be squeezed out of it, a tubercle is formed on the back of the embryo, sometimes a huge bubble. This defect is visible on the ultrasound. In some countries, with such a diagnosis, intrauterine operation is performed , as if adjusting the spinal cord in place. In Russia, such operations are not done. They operate immediately after birth, the spinal cord is torn, the children remain with paralyzed legs.

It turned out that all the other troubles of the mountain are the consequences of Spina Bifida. The so -called concomitant diseases are hydrocephalus, the impossibility of independent urination, fecal incontinence, a failure in laying the genitourinary system (the mountains were born at all without a bladder and penis, he was simply brought to the ureters directly onto the abdomen), problems with the spine, and other orthopedic problems.

Even the orphanage of the mountain is partly a concomitant problem. In Russia, such children are often refused already in the hospital. Even in the tiny house of such children, there are two.

Clockwise: mountains; in the courtyard of the clinic; The mountains are going for a walk; Mountains and Fatima on a walk photo: Anna Ivansova for TD

So, when the journalist, editor -in -chief of “such cases” Valery Panyushkin told me that in Russia there is now a special fund for helping children with Spina Bifida, and that he was going to look for children with this diagnosis even in specialized boarding schools, I felt terribly offensive. It's a shame that there was no such fund when the mountains were only born - maybe then they would explain to Mom Gora what kind of diagnosis is, and what can be done, and how to live with such a diagnosis. It's a shame that no one found a mountain in a boarding school, did not pull it out of the bed and did not say what to do with his back.

***

I still keep a letter from the consultation of the best Russian urologists. It says: “Having analyzed the extract from the medical history, the Consulty decided- there is no testimony for reconstructive and restoration surgical treatment.” A little over a year ago, immediately after the mountains moved to the house, we began to show it to specialists. I introduced it in my arms in different procedural and cabinets, he in love with all doctors and nurses in love - he learned to do this well in the boarding school. His skill depended on this, painfully or not painfully will do this or that procedure. Then we waited a long time until we finally received this letter. I did not really understand what it means “no testimony”, it seemed to me that the hole in the stomach of a little boy was the most important indication. Then they explained to me that this phrase meant only that in Russia they could not help the mountain in any way, we do not do the plasticity of the bladder and genitals. Then everything spun quite quickly - we were helped to find Professor Imran Mushtak in the London Hospital Portland Hospital. The Russian Assistance Fund collected a huge amount of money, the mountain made visas and on September 1 last year flew off to the operation.

At the airport, when it was necessary to hand over the stroller in front of the ladder, the mountains asked: “Listen, maybe it is better to ask them for them to do another operation? Better to fix my legs so that I can walk like you. "

"Better to fix my legs so that I can walk like you"

The day before the operation, we rolled along London Street, and someone suddenly screamed after us: "Hey, Bifid's back?" A man shouted about 40 years old - with a beard, in a fashionable sweatshirt and in a wheelchair. We talked, it turned out that he also had Spina Bifida, that he was going from work to his favorite pub, he lives alone, was married, caring for his elderly grandmother. I translated the mountain, in response, said that he had an operation tomorrow, that he was an orphan, that we are from Russia, where people in wheelchairs do not often go to a pub and work.

Fatima shakes a mountain on a swing photo: Anna Ivansova for TD

About how the mountains transferred an eight -hour operation, for several days in intensive care, two weeks in the hospital - I already wrote . They explained everything to us, taught everything, supported at every step. The mountains are now practically no different from an ordinary boy - he was made plastic of the bladder and genitals. Of course, we did not overcome Spina Bifida, but overcame concomitant diseases. It seemed to me that the mountains are now an ordinary boy, just in a stroller. I flew to Moscow, at first his godmother was the mountain, then his teacher from the house, a month later I returned to pick up the mountain and bring it home. The hospital was assured that everything was perfect, everything works - the last ultrasound remained. The teacher of the mountain, flying away, told me that in the hospital something was hidden from us, they were not talking, and that there was no point in the operation.

I was one on one with a child who had just redrawn all the insides

Then three stranger days began. It is very difficult to describe them, because now, retrospective, it seems to me that there was nothing wrong. But then I was alone with a child who had just redrawn all the insides. There was now a small hole in the stomach of the mountain. It was necessary to insert a catheter there to pour urine from the new bladder every three hours. But we could not wait in any way: the catheter slipped out, the urine poured directly from this hole, we were both wet all the time, everything stinked, I was nervous, cursed for idiocy, the mountains cried, asked to be returned to him as it was. The hospital said that everything is fine with us, that time needs time, that the bladder will stretch, and everything will return to normal. I left the hospital calm, we came to the apartment, and it all started first. I needed someone who had already gone through it. Who could talk to me about the details.

On the Russian -speaking Internet, I found a forum for people with spinal injuries. Young men, after accidents and accidents, immobilized, who is below the waist, and who is completely paralyzed, tried to find help and advice from each other. I read their messages all night and sobbed. Almost all of them wrote that a doctor from the district clinic simply did not understand such subtleties, they taught each other how best to insert a catheter into the urethra, which catheters are better, the guys paralyzed from the neck, asked where the wife or mother could learn catheterization, every second message was about how painful, every third - about how embarrassed.

Self -portrait. The photo is taken by mountain

Then I began to look in English. The first link led to the website of the British Ministry of Health. There was a large section about Spina Bifida and many subsections - catheterization, urinary incontinence, feces, spine problems, hydrocephalus. Everywhere it was written that yes, the syndrome is serious, but nothing terrible and shameful, you can live normally, socialize, there are solutions. Then I found links to helping organizations: help people with Spina Bifida, help people with bladder plastic, help people with fecal incontinence, parental associations, forums, hotline phones.

After three days of reading articles, messages on the forums and everything that could be found, I realized that we were all right, that soon we would adapt, that everyone went through it. We returned to Moscow.

So, when Panyushkin said that now in Russia there is a fund that helps people with Spina Bifida, I felt terrible, it’s a shame to tears. That there wasn’t such a fund when I stood with a catheter in my hands, all in the urine, holding a wet child in my arms, afraid to pierce him through this catheter through. I was offended that then I had no one to call. I was even more offended that there was no one to call hundreds of people throughout Russia, that there was no one to teach them how to use the catheter, there was no one to support them. Although in fact there was already nothing to be offended.

***

Now I, indeed, is almost completely offended by the mountain. In early summer, a funny, cheerful girl Fatima took the mountain to the guest regime. And two weeks ago it officially became the mother of the mountain. He now lives at home, sleeps in his bed, goes to school, learned to read and write, was with his mother in Georgia and in the country with friends, knows that the pasta must be boiled, and bread is sold in the store.

“Why didn't you do this before? For 10 years the child lived with a protruding leg! ”

In the summer, Fatima with the mountain flew again to London. This time a small leg was operated on the mountain - now the mountains can lie on his stomach, and when it lies on his back, the leg no longer sticks up at a right angle. The gray -haired and strict Dr. Hill, who performed the operation, first seeing the mountain, could not believe his eyes: “Is it just idiocy, why didn’t you do this before? For 10 years the child lived with a protruding leg! ”

Fatima did not have her children, but from somewhere she knows the most important thing about motherhood. What I thought of only the third child. Fatima knows that there is nothing more important than attachment and acceptance. That mom is a person who will not go anywhere, and who needs you. The mountains say the word "mother" about a million times a day. Firstly, to make sure that Fatima is nearby, and secondly, because it is, however, a very pretty word. Mom is a person who will fight your problems with you always. And with Spina Bifida, the mountain and Fatim will always have to fight. They will need catheters all their lives, problems with their backs will not go anywhere - they will need a special bed, and the help of a physical therapist, and the help of an orthopedist.

Hide and seek game: mountains and Fatima are hidden photo: Anna Ivantsova for TD

But the mountain has already been taken to the Spina Bifida program “Take a step”, in the framework of which journalist Panyushkin is looking for orphans with such a diagnosis. Now a physical therapist and orthopedist will regularly go to him.

Read also Mom was mistaken in the story of Fedi Sarabiev, operated on the womb

I am no longer offended by the mountain, I just really want the fund to grow and work.

The fund supports not only children with Spina Bifida. The program helps pregnant women who are faced with this problem, find a doctor - in Switzerland, in Israel, in India, in Russia, undergo examinations, collect money, receive, if necessary, visas and tickets.

The Spina Bifida program exists on your donations. Any amount - 100, 500, a thousand rubles - can help. Let's take this step right now by issuing a regular donation.