Delicate topic. "my child is a freak." The strangest newborns Expensive freaks supposedly dead baby

1. Frog baby (Anencephaly)

This strange-looking baby was born in Charikota in 2006, Nepal. His neck is completely fused to his head, and his eyes are so big that they pop out of their sockets. This child suffers from anencephaly, a disease that develops early in pregnancy and is usually associated with exposure to environmental hazards, toxic substances, or infection. Most infants with anencephaly do not live to see birth. Unless the baby is stillborn, he or she usually dies within hours or days of birth.

2. A child with two faces (Diprosopus)

Lali was born with two noses, two pairs of lips and two eyes, but (!) only two ears. While she appears ugly and strange to those around her, her proud parents believe that she is the reincarnation of God. Her parents claim she is "a gift from God".

The girl was born with diprosopus disease - this is a deformity of the fetus: conjoined twins with one body, normal limbs, but two faces.

The doctors who examined the child said that she was in good condition and was leading a normal life without difficulty in breathing. They were not initially sure that the child would have normal functions, but as it turned out, she was doing well with two pairs of some organs. The most amazing thing is that she can open and close all four eyes at the same time.

3. Child with one eye (Cyclopius)

This child was born in Nigeria. He suffers from cyclopia, a fetal malformation in which the eyeballs are fully or partially fused and placed in one eye socket, which is located in the midline of the face. Usually Cyclopes do not have a nose. The defect is due to a chromosomal mutation or maternal ingestion of teratogenic substances

4. Striped baby tiger (Arlecchino ichthyosis)

This strange baby was born in Pakistan in March 2010. He suffers from a strange skin disease - Jester's Ichthyosis. The first case of this disease was reported as early as the 1700s. With this rare disease, the skin hardens, becomes covered with cracks and scales. The child was in intensive care after birth due to his weak and terrible condition. Shortly after the birth, huge crowds of people gathered in the hospital to see the strange baby. It had red stripes all over its body just like a tiger, and blood-red eyes that looked like the eyes of movie aliens. According to the doctor, his chances of survival are only 10%.

A nurse holds an Egyptian child named Manar Magid at a hospital in the city of Banha, north of Cairo. He suffers from a rare disease in which the head of a twin that does not have a torso is attached to the head of a normal twin.

In total, there are 10 documented cases of this phenomenon in the world. Although currently at least 80 cases have been described in various sources. Only three of the newborns with this disease managed to survive.

6. Child with a heart outside (Ectopia of the heart)

This baby was born in 2009 with a heart outside of his body. He has an ectopic heart birth defect, in which the heart is not properly positioned. In most cases, children are stillborn or die during the first days of life. Causes of death are usually infections, heart failure, or hypoxemia.

7. Child with multiple limbs (Polymelia)

Polymelia is a birth defect. This is a deformity of development, consisting in the development of extra limbs.
Lakshmi was born in India and is accepted as a Hindu goddess in India who has multiple limbs.

I gave birth to a freak child. It is impossible to look at him without a shudder. I dare not even describe it to you. At the hospital, I asked the doctors to kill him. I felt that if I took it in my arms, then the maternal instinct would wake up in me, and I would doom myself and him to eternal torment, which was the result. I was offered to take him to the orphanage, but would that save me from the torment? My son's deformity is incurable. I hide it from neighbors, acquaintances, relatives. If you could imagine what my life has become... I'm on the verge of suicide. Why is our society so cruel? I still remember how the doctors screamed at me when I asked him to give him a single injection that would solve all the problems ...

I. P., Kursk

In preparing this material, I encountered a similar reaction. Doctors, mothers, obstetricians and officials, to whom I tried to read the letter, began to shout in one voice: "How can you?! What cynicism! Yes, we have never even heard the word such a wild "freak"!" Maybe. Deviation from the norm is now called pathology. But there is such a word in Russian. There is even a whole science dealing with deformities - "teratology".

The problem of whether or not such people should live in this world is also not new. In Sparta and Athens, newborn deformed children were thrown off a cliff. In ancient Rome, it was allowed to kill children "without a human image." In the Middle Ages, the birth of a freak was considered the result of the fact that his mother sinned with the devil, and such women were considered witches. In the XVI-XVII centuries. freaks were publicly burned at the stake. In 1683, a child "with a cat's head" and his mother were burned in Copenhagen.

In Russia, in 1704, Peter I issued a special decree forbidding midwives from killing freaks.

Both humane Soviet medicine and our current one know such cases. Of course, it is unlikely that any of the doctors will admit that they did something like this with their own hands. And not even under the fear of the existing criminal liability for this, but simply ... Nevertheless, doctors who, by the nature of their specialization, have to face every day how cruelly nature sometimes takes revenge on a person, know that parents are sometimes ready to take a soul and their own and others' sins. If only not to carry this cross through life and not to know that somewhere the little creature, abandoned by you to the mercy of domestic social protection, is "adapting".

"Sometimes you operate on such a child, and the mother prays outside the door:" Lord! If only he were dead!" - says L. Frolova, director of the medical and practical complex for the treatment of children with congenital malformations of the face and jaws. - Or they invite you for a consultation and ask: "Can you make him ... well, how- painlessly..." I immediately answer them: "Who did you invite: a doctor or a murderer?!"

“During the 4 years that we have been in existence, I have been approached with such requests three times,” says A. Prityko, head of the Children’s Center for Neurosurgery, Psychoneurology and Surgery of the Craniofacial Region. “When we say that we will not kill anyone, they take away children and leave. They don’t want to continue treatment.”

There were no statistics on how many such babies are born in Russia. Dr. Prityke claims that every year we have 10,000 small Quasimodos that he could help. Of these, 50-60 people get to his Center, the only one in the country. As a rule, these are all abandoned children. Until now, their treatment has depended on the conscience of the children's home workers. So what will happen now that everything has come down to money?

Previously, the birth of freaks was explained by the wrath of the Lord, comets or impending disaster. Today, every specialist can name their reasons and "geography" of the appearance of deformities. L. Frolova, for example, classifies deformities - up to the microdistrict of the capital and even the season. However, she is not going to publish this data: after all, there is nowhere to go from the dangerous area anyway. The main causes of ugliness: our hard life, smoking, alcohol, ecology, unfavorable conception cycles.

The ways to prevent the birth of little sufferers come down to one thing: to see the pathology as early as possible and persuade the woman to have an abortion. The indications for this have now been expanded and the period has been increased to 6 months.

In order to accurately determine the pathology, there are many methods: from insanely expensive cytogenetic (analysis, which, according to N. Volodin, is done in the West for free for all pregnant women over 40) to more or less simple cytochemical. Of all this, only ultrasound scanning (ultrasound) is really available to our expectant mothers, which a little more than half of pregnant women can do.

In addition, it is clear that the pathology of pathology is different. I have seen children with Down's disease, there are many of them in orphanages, and sometimes they can hardly be distinguished from healthy ones. But one day, when I saw a child with a head several times larger than his body, with atrophied arms and legs, I could not hide my horror ... And my first thought was - what does he live for?

When I asked the doctors, and it would not be more humane .., they involuntarily burst out: "And who, in your opinion, should do this? Who will dare to commit murder?" But since there is such a question: who will do it, then, even theoretically, there may be situations when it is necessary to solve it?

In Russian social networks, the #necessary_words project is gaining popularity. Its mission is to support women who have lost a child before, during and shortly after childbirth. According to the Light in Hands charity foundation, in 2016, 17,000 stillbirths were registered in Russia. Approximately the same number of pregnancies were terminated for medical reasons. For a woman, the news that she will have to have an abortion because doctors doubt the viability of the fetus becomes a tragedy. A family in such a situation is often left alone with their grief, and in dealing with doctors, instead of receiving support, they receive additional psychological trauma. Why is this happening and whether it is possible to help them - found out.

The editors intentionally chose a harsh tone in the presentation of this material in order to draw attention to the problem of ethical treatment of mothers who have lost their children during childbirth.

"Lenta.ru"

newborn waste

Three years ago at Natalia and Vladimir Skripin's (surname changed) from Yekaterinburg, a child died in a hospital during childbirth. The doctors refused to release the body for burial. Legally, they did not violate anything, because according to Russian laws, a fetus born no earlier than the 22nd week of pregnancy, weighing at least 500 grams and at least 25 centimeters tall is considered a person. Everything else is biological waste and must be disposed of as sanitary waste.

The pregnancy was long-awaited, Natalya recalls. - At first everything went well. Even toxicosis did not torment. And then I went with my husband for an ultrasound. He wanted to know the gender and get a photo of the baby. I can still see the expression with which the doctor looks at the computer screen and hides his eyes from me. And I have a smile on my face. Because it is clear that something terrible has happened. And then the verdict: "The fetus is not viable."

The term was already long - five months. Doctors insisted on artificial childbirth. During this manipulation, the pregnant woman is given special pills that cause contractions. Parents did not agree and ran from one local luminary of gynecology to another with a crazy hope: suddenly a mistake.

You have no idea how much pressure the doctors put on us when they found out that we did not want to terminate the pregnancy, Natalia sobs. - It's very scary. And this squeamish tone - as if a threat to all mankind is growing in my stomach!

According to Natalia, everything ended naturally - a spontaneous miscarriage. Natalya really wanted to look at her son, but in the first minutes after the birth she was almost unconscious. And then no one allowed. They also refused to give out the body for burial with the wording: “You will give birth again. Everything is for your own good, so that at night you don’t dream of horrors later. ”
Despite the fact that several years have passed, Natalya says that she cannot forget her failed son.

My mother-in-law and even my mother erased everything from memory and pretend that the child didn’t exist, Natalya continues. I really want to, but I can’t reset the memory. I often think about who my boy would look like. I didn't even see him. I dream about how it is thrown into a landfill, like biological garbage.

At family forums, the topic “Is it necessary to bury embryos” is constantly discussed. Tragedy survivors share experiences. Since the law does not endow the fetus with human rights, a birth and death certificate is not issued for it - therefore, it is impossible to officially arrange a burial. But many do it bypassing bureaucratic procedures.

My baby, who was born at the 20th week of pregnancy, died, ”says Irina, a Muscovite. - The hospital did not want to give the body, they said that the state buries the stillborn. But then the husband informally agreed. Issued in a box. They buried themselves in grandfather's grave. For a long time I could not decide to come to the cemetery. And now I go there often. It helps to let go of grief.

One of the first to raise the topic of pain from failed parenthood in the public space was the writer. In the autobiographical story “Look at him,” she told how, at the 16th week of pregnancy, she found out that her child was terminally ill. The book details what the mother-to-be faces if something goes wrong. A woman is treated like an inanimate object that is not supposed to have an opinion. For example, if a rare pathology is found in an embryo, then the doctor, without even asking permission from the patient, may invite students to look at the “interesting object” for educational purposes.

Photo: Sergey Venyavsky / RIA Novosti

Against the background of global problems in Russian healthcare, the lack of ethics does not seem something terrible, but recently an ultrasound doctor from St. The doctor gives specific recommendations on the tactics of conducting a conversation.

Telling a patient bad news is a certain test for a doctor, Nekrasova explains. - A defensive reaction in a morally difficult situation is the desire to end an unpleasant conversation as quickly as possible, since it is difficult not only for the patient, but also for the doctor.

Dr. Nekrasova is now working on the details of a practical training on "Breaking bad news" for doctors of prenatal (prenatal) diagnostics, in which professional actors will participate.

“Parents should have a chance to say goodbye”

In Russia, they are just beginning to talk about the need for perinatal palliative care, including psychological assistance to parents. And in Europe and America, this direction has been developing for a long time. At the Palliative Care for Children conference organized by the Vera Charitable Foundation, Joan Wolf, Head of the Department of Palliative Care at the Boston Children's Hospital (USA), spoke about this. Later, she answered questions from Lenta.ru.

"Lenta.ru": Why is the US concerned about this problem?

Joan Wolf: A number of scientific papers have been published in which neonatologists have pointed out that many newborns die in agony without receiving any help, and their parents are left without support. This problem was widely discussed, and about 10 years ago, at the request of society, a new service appeared.

The main task of the perinatal palliative care is to help the mother and family when it is found that the fetus has serious pathologies. We are talking about conditions when a child can die in the womb, live a short time or remain disabled. Usually the starting point is the office of an ob/gyn who understands that the fetus has serious problems. The doctor talks about the diagnosis, and then, if necessary, calls the palliative care team. Experts come and discuss different options.

Photo: China Stringer Network / Reuters

There may be several? In Russia, in case of serious malformations, doctors strongly recommend terminating the pregnancy.

In the US, the situation is similar: most families said that doctors persuaded them to have an abortion. Most often this happens with identified genetic disorders. In such cases, many gynecologists for some reason are sure in advance that the woman will want to have an abortion. But it all depends on what values ​​the family professes. Do not forget that the United States is a religious country, there are many Catholics. Under no circumstances can they have an abortion. Often mothers, even fully aware of the difficulties ahead, decide to give birth and wait for the natural development of events.

Who is the palliative team?

This is usually a pediatrician with a year of training in palliative care, a nurse and a social worker.

What exactly do they do?

Most importantly, they provide complete information about how the disease will develop, what to expect. If the family decides not to terminate the pregnancy, they prepare the parents in advance for difficulties. The issue of resuscitation is being discussed - with the help of a ventilator, life can be maintained for a long time. If the natural path is chosen, the doctor decides how to alleviate the child's condition from the first seconds of life so that he does not feel discomfort. Parents should have a chance to hold their child in their arms, to say goodbye. We always suggest doing this, even in case of premature birth, when the baby is very young.

But why? In Russia, doctors, on the contrary, believe that this can negatively affect the psyche of a woman. Long farewell - extra tears ...

Previously, the United States adhered to exactly the same position. But there are scientific studies that in the long term, for many, such alleged “care for the psyche” led to serious mental problems. The woman has an unprocessed psychotrauma. She does not understand - there was something or not. The rite of farewell, as it were, puts an end to it. Therefore, now all mothers are asked the question: do you want to? Most agree.

"We remember your child"

And if the child has obvious physical deformities, will this condition of the mother aggravate?

Doctors warn relatives what to expect, what to prepare for. Even a child with developmental anomalies is always useful for mothers to hold in their hands. For many parents, this baby, despite all the shortcomings, is a favorite, he is a part of them. The child is usually cooked before being handed over to the hands of relatives. They swaddle him, put on a hat. And he doesn't look terrible. We also always offer to make prints of arms and legs so that parents have something to remember. We partner with a professional association of volunteer photographers who, as volunteers, invite families to take professional photographs of a child before or after death. This remains later as evidence that their child was, he did not disappear without a trace. We invite all family members and close friends to participate in the farewell ceremony.

Even older children, if they are in this family?

If a brother or sister is over four years old, then it is right for them to have this experience. That is, it is better to participate in a family tragedy than to remain in the dark. Children still feel that something bad is happening, and can draw terrible pictures in their imagination. At such moments, they are given less attention, and some take it personally - they think that bad things happened because they did not obey. Others suddenly decide that they are no longer loved. And when they themselves see what is happening, it also has a psychotherapeutic effect on them.

In Russia, the bodies of premature babies are often not allowed to be buried because it is legally considered "bio-waste".

Our family decides everything. Parents are guided by their traditions. Usually such a child is buried in the same way as everyone else.

Have there been cases when terrible forecasts of doctors turned out to be erroneous and an absolutely healthy child was born?

Misdiagnosis can be made, but it mainly concerns chromosomal abnormalities. For example, Down syndrome, Edwards. A couple of days ago we had almost a miracle. At the stage of pregnancy, the child was diagnosed with a serious pathology of the skeleton. It was seen that the fetus had abnormally short limbs and a very small chest. Doctors were sure that the girl would die in the process of childbirth. However, a normal baby was born. Of course, we are not talking about absolute health, the skeleton is underdeveloped, but the most important thing is that the child can breathe on his own. And it's practically a miracle. A gynecologist at one time recommended an abortion to the family.

Of course, there are no pre-prepared scenarios where all the remarks are written. But on this topic, trainings are necessarily held, where different situations are played out with the actors. A doctor of any specialty can participate. However, there are many specialists in the same palliative who are trying to do this work without proper training. They make a lot of mistakes in communicating with families.

What, for example?

I can give an example not from the perinatal palliative, but the situation is similar. I interviewed the parents of children who died of cancer. Among others, the questionnaire included the question: “What is your impression of how you were told the tragic news?”. Parents often recalled that doctors and nurses were too emotional in these situations. Sometimes they even felt some anger towards the families of the sick.

The doctors were angry because they couldn't cure the patient, couldn't help?

This happened, for example, when the parents refused the solutions recommended by the doctor. And in perinatal medicine, a doctor can often say rudely: “Don't you understand that your child will be born dead? Why don't you terminate the pregnancy?" If a woman even heard this once, she will never forget it.

Photo: Yury Martyanov / Kommersant

Are those who work in palliative care required to receive training in the ethics of dealing with patients?

We do not have a supervisory body that would monitor this. But our system is set up in such a way that over time everything will normalize itself. Untrained specialists can exacerbate the tragedy -
hence ruining their reputation. And we take our reputation seriously. Therefore, gynecologists need to take this into account and develop appropriate skills.

How long is a woman under guardianship after a tragedy?

So far there are no standards. Everything is individual. Some time after the death of the child, the palliative team invites the woman to come back for a consultation. Then they keep calling her. And usually the perinatal palliative team six months, a year, and a half after the tragedy sends cards to the family by mail with the words: “We remember you, we remember your child.”

Maybe some families, on the contrary, want to quickly forget this nightmare? And you open their wounds again.

We pre-survey parents. There is a column in which it can be noted that information letters are not needed. But this mailing list has been running for ten years. And for all the time there was only one refusal. Families appreciate personal attention, they are grateful that someone remembers: there was such a child. This is very helpful for parents to deal with grief.

WARNING NOT FOR THE FAIRY HEARTED! DO NOT ALLOW CHILDREN TO VIEW!
More than 30 years after the end of hostilities in Vietnam, relations between Hanoi and Washington remain strained. The reason is America's use of a chemical weapon, Agent Orange.

This war ended on April 30, 1975, but its curse affects both the second and third generations of Vietnamese people.

In the 60s and 70s, the Americans, trying to find the hiding places of the Viet Cong, sprayed Agent Orange from aircraft. The main component of "Agent Orange" - poison "number 1" - dioxin.

Dioxin is a generic name for a whole group of organochlorine substances with a rather specific structure. There are about eight dozen dioxins in total. The most common in the "language of chemists" is abbreviated as TCDD. Perhaps it is also the most dangerous, since it is 67 thousand times more poisonous than potassium cyanide. It can become a powerful immunosuppressant, like the AIDS virus. May cause serious cancer.

During the war, the United States sprayed about 80 million liters of Agent Orange over the territory of Vietnam ...

45 million liters were secretly sprayed over the southern parts of the country, close to the Cambodian border.

The Vietnamese had to sit in shelters for weeks due to American bombing. When they went outside, the trees around were already without leaves.

"Agent Orange" has had and is having a detrimental effect on the gene pool of the population of these regions.

The potent defoliant is responsible for the increased rate of birth defects in people in areas where this poisonous chemical has been sprayed.

Until now, children with various kinds of congenital deformities, physical and mental, are born in Vietnam. Many of them are at high risk for cancer.

There are especially many disabled people in remote villages in the Mekong Valley.

In Vietnam, there are approximately 4.8 million victims of this poisonous substance, including three million directly affected by the so-called "orange rain".

There are still a large number of people who have become disabled due to the fact that their parents and grandparents were subjected to dioxin treatment.

In the late 1990s, Canadian researchers took samples of the soil, water, and fish and ducks living in it, as well as samples of human tissue.

They found that in the contaminated areas, the concentration of dioxins in the soil exceeded the norm by 13 times, and in the fatty tissues of the human body - by 20 times.

Japanese scientists who compared infected and uninfected areas found that in infected areas, the risk of having children with a cleft palate, the so-called cleft palate, is three times higher ...

Or with extra fingers and toes.

In addition, children born in these places are eight times more likely to have an umbilical hernia ...

...and three times more likely to have congenital mental disorders.

The spraying of chemicals over Vietnam ceased in 1971 at the request of the public, but by that time 6,000 sorties had already been flown.

Nguyen Trong Nhan, a spokesman for the Vietnamese Association of Agent Orange Victims and a former president of the Vietnamese Red Cross, considers the use of the substance a war crime.

"We are trying to help those affected by this substance and the dioxins it contains, but our government's capacity is limited," he admits.

In 2004, the association's activists filed a lawsuit against the chemical companies in an American court. The plaintiffs sought compensation from chemical companies for damage to human health and the country's ecology.

The amount of monetary compensation in the event of a judicial victory could amount to several billion dollars.

About freaks and children
Valery Yakov

My Motherland killed a child. My motherland is strong, proud, powerful... They even say on TV that she got up from her knees, and now everyone is afraid of her. And some even respect to hide fear. My homeland is called Russia.

And the child, on the contrary, was small, weak, he hadn’t even had time to get on his knees, let alone from his knees ... He still didn’t know what fear was, because his world was full of love - the love of mom, dad, grandmother ... The child was only five months. And his homeland was also Russia. The child's name was Umarali. Nazarov.

The boy was lucky - he was born in the great city on the Neva and, if he grew up, he could consider himself a Petersburger, which is worth a lot in modern times. His dad worked for the good of this city, his young mother came from Tajikistan with a dream to give birth to a child in Russia. And mom, dad, and grandmother - everyone was lucky, their dream came true, and a smiling Umarali appeared in the family. But their happiness lasted only five months. And then everything collapsed.

One evening, unfamiliar men in uniform suddenly knocked on the door. At first they seemed like decent people because they were in uniform and represented the state. And that means Russia. But the men were ugly. These freaks from the FMS dragged a mother with a five-month-old baby to the police, because the mother did not have time to renew her registration. Mom did not threaten mighty Russia with anything, she was ready to rush to renew the registration with the child in her arms, especially since all family members had everything in order with the documents. But the freaks dragged her and the child to the police.

In the police, other freaks, already in police uniform, threw the mother behind bars, and the child was torn away from her. At that moment, the world of love for the five-month-old Umarali ended. The world of freaks has begun.

Freaks in police uniforms called doctors to the police to give them the child, who was torn from his mother without any court decisions. Freaks in white coats took the child, who was torn from his mother, and took him to the hospital. When, a few hours later, grandmother and father arrived at the hospital to pick up the child, the freaks in white coats did not give the baby away. They told me to come in the morning. But until the morning in the world of freaks, the child did not survive. Little Umarali died alone in big Russia, left alone with the freaks. And with the Motherland, which never had time to love him.

The death of this unknown baby stirred up many kind people of various nationalities. People began to go to rallies, organize pickets, began to demand punishment for freaks. And the bosses of these freaks shuddered. And the chief of chiefs, Prime Minister Medvedev, took the matter under his personal control. And he even promised the President of Tajikistan to find those responsible. And to punish ... In short - everything is as always ...

But soon the chiefs in the FMS, in the police, in the hospital reported that they had no guilty. That freaks are not found there. That mom is to blame. And Umarali himself is to blame. She didn't have a seal. And he had all the deadly diseases that could be urgently invented. True, neither the children's doctor, nor the district nurse, nor the parents had time to notice these diseases in five months, while the cheerful Umarali was alive. But as soon as he died in the world of freaks, the diseases showed up ...

And if so many deadly diseases were suddenly discovered, then the perpetrators were gone. And the freaks again turned into decent-looking people in uniform and white coats. And for the time being they disappeared among the really decent ones, who are in the FMS, and in the police, and in clinics ...

Last night, freaks expelled from Russia a recent young mother, Zarina Yunusova, who had fallen into terrible melancholy and depression. Together with her, a coffin with the body of a five-month-old Umarali was loaded onto the plane. Mighty Russia dealt with this Tajik family. Strong Russia did not flinch from the tears of a child. She was not afraid of pickets of indignant Russians. She did not come to the defense of a five-month-old baby, for whom she was the Motherland. She did not support her heartbroken mother. Proud Russia defended its freaks. After all, though they are freaks, but their own ...
P.S.
Save. Bless and save.
You see destruction in deeds.
Do not execute by the hand of the lord.
I am a sinner You do hear.

But I repent and sin again
And I carry a heavy cross.
I am strong in faith, weak in spirit,
The soul is free, the flesh is a slave.