How does a child get an extra chromosome
Trisomy 18 and 13 | Boston Children's Hospital
Listen
The term trisomy describes the presence of three chromosomes instead of the usual pair of chromosomes. For example, trisomy 21, or Down syndrome, occurs when a baby has three #21 chromosomes. Other examples are trisomy 18 and trisomy 13, fatal genetic birth disorders.
- Trisomy 18 occurs in about one out of every 6,000 to 8,000 live births, and trisomy 13 occurs in about one out of every 8,000 to 12,000 live births.
- It's characterized by severe mental retardation and health problems involving nearly every organ system of the body.
- Babies with the disorders usually die by age 1, but there have been a few cases in which children survive into their teens.
- Trisomy 18 is also called "Edwards syndrome" and trisomy 13 is also called "Patau syndrome," after the physicians who first described the disorders.
What types of problems do children with trisomy 18 and trisomy 13 typically have?
Trisomy 18
- thin and frail babies with a weak cry
- feeding problems
- small head size with the back of the head prominent
- ears are usually low-set on the head
- mouth and jaw unusually small
- shortened sternum (breastbone)
- about 90 percent of babies have heart defects
- clenched fists
- difficulty extending fingers
- contracted joints
- spina bifida, eye problems, cleft lip and palate, and hearing loss may be present
- seizures
- high blood pressure and kidney problems
- scoliosis (curvature of the spine)
- in males, the testes fail to descend into the scrotum
Trisomy 13
- low birthweight
- small head with a sloping forehead
- usually there are major structural problems with the brain including holoprosencephaly, when the brain does not divide properly
- close-set eyes
- underdeveloped nostrils
- eye problems
- ears low-set and unusually shaped
- scalp abnormalities that resemble ulcers
- birthmarks that are purplish-red
- extra fingers and toes (polydactyly)
- feet with prominent heels
- heart defects, kidney problems
- omphalocele, a condition in which some of the abdominal organs protrude through an opening in the abdominal muscle around the umbilical cord
- in males, testes may fail to descend into the scrotum
- females may have abnormally shaped uterus, or a bicornuate uterus
What is the risk of parents of a child with trisomy 18 or trisomy 13 having another child with trisomy 18 or 13?
The chance of having another baby with trisomy 18 or 13 is no more than 1 percent, although the risk increases slightly as the mother ages. The genetic test to diagnose trisomy 18 or 13 in a baby can determine the underlying chromosomal abnormality, which is important in determining a mother's risk in future pregnancies. Your doctor may refer you to a genetic physician or genetic counselor who can explain the results of chromosomal tests in detail, including recurrence risks.
Trisomy 18 and 13 | Symptoms & Causes
What causes trisomy 18 and trisomy 13?
Trisomy 18 and 13 are usually caused by spontaneous genetic mutations that occur at the time of fertilization. Normally, each egg and sperm cell contains 23 chromosomes. The union of these cells creates 23 pairs, or 46 total chromosomes, half from the mother and half from the father. Sometimes, an error occurs when an egg or sperm cell is forming, causing it to have an extra chromosome #18 or #13.
- When this cell contributes the extra chromosome 18 to the embryo, trisomy 18 results.
- When this cell contributes the extra chromosome 13 to the embryo, trisomy 13 results.
The extra chromosome 18 or 13 can come from either the mother's egg cell or the father's sperm cell.
In some instances, the extra chromosome 18 or 13 is attached to another chromosome in the egg or sperm. This is called translocation and is the only form of trisomy 18 or 13 that can be inherited. Sometimes, a parent can carry a "balanced" rearrangement in which chromosome 18 or 13 is attached to another chromosome. However, since the parent does not have any extra or missing chromosome material, they are said to have a "balanced translocation" and they are usually normal and healthy.
Trisomy 18 and 13 | Diagnosis
How we diagnose trisomy 18 and trisomy 13
Chromosomal abnormalities such as trisomy 18 and 13 can be diagnosed before birth by analyzing cells in the amniotic fluid (amniocentesis) or from the placenta.
- A fetal ultrasound during pregnancy can also give information about the possibility of trisomy 18 or 13, but ultrasound is not 100 percent accurate because some babies with trisomy 18 and 13 may look the same on ultrasound as those without the syndrome.
- A chromosome analysis, whether performed on a blood sample, cells from the amniotic fluid, or placenta, is over 99.9 percent accurate.
Since trisomy 18 and trisomy 13 each have a unique group of characteristics, a physician may be able to determine simply by physical examination whether a baby has trisomy 18 or 13. To confirm the physical findings, a small blood sample can be taken and the chromosomes can be analyzed to determine the presence of an extra 18 or 13 chromosome.
There is no cure for trisomies 18 and 13 at this time. Treatment is based on support and managing symptoms. In fact, many babies born with these disorders may not live beyond the first few days or weeks of life. It is important to discuss whether to use life support measures or other medical procedures.
Trisomy 18 and 13 at Boston Children's Hospital
Decisions surrounding the care of infants with trisomy 18 and 13 are difficult and personal. Your doctors at Boston Children's can connect you with resources available to provide support and help your during this time, including early intervention services, social workers, the Department of Spiritual Care (chaplaincy), and genetic counselors.
Other families who have or have had a baby with trisomy 18 or trisomy 13 are particularly helpful and supportive, since they have experienced many of the same questions and emotions. We can help connect you to families who have faced similar situations.
Trisomy 18 and 13 | Programs & Services
Departments
Programs
Facts about Down Syndrome | CDC
What is Down Syndrome?
Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms and functions as it grows during pregnancy and after birth. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. A medical term for having an extra copy of a chromosome is ‘trisomy.’ Down syndrome is also referred to as Trisomy 21. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby.
Even though people with Down syndrome might act and look similar, each person has different abilities. People with Down syndrome usually have an IQ (a measure of intelligence) in the mildly-to-moderately low range and are slower to speak than other children.
Some common physical features of Down syndrome include:
- A flattened face, especially the bridge of the nose
- Almond-shaped eyes that slant up
- A short neck
- Small ears
- A tongue that tends to stick out of the mouth
- Tiny white spots on the iris (colored part) of the eye
- Small hands and feet
- A single line across the palm of the hand (palmar crease)
- Small pinky fingers that sometimes curve toward the thumb
- Poor muscle tone or loose joints
- Shorter in height as children and adults
How Many Babies are Born with Down Syndrome?
Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 in every 700 babies.1
Types of Down Syndrome
There are three types of Down syndrome. People often can’t tell the difference between each type without looking at the chromosomes because the physical features and behaviors are similar.
- Trisomy 21: About 95% of people with Down syndrome have Trisomy 21.2 With this type of Down syndrome, each cell in the body has 3 separate copies of chromosome 21 instead of the usual 2 copies.
- Translocation Down syndrome: This type accounts for a small percentage of people with Down syndrome (about 3%).2 This occurs when an extra part or a whole extra chromosome 21 is present, but it is attached or “trans-located” to a different chromosome rather than being a separate chromosome 21.
- Mosaic Down syndrome: This type affects about 2% of the people with Down syndrome. 2 Mosaic means mixture or combination. For children with mosaic Down syndrome, some of their cells have 3 copies of chromosome 21, but other cells have the typical two copies of chromosome 21. Children with mosaic Down syndrome may have the same features as other children with Down syndrome. However, they may have fewer features of the condition due to the presence of some (or many) cells with a typical number of chromosomes.
Causes and Risk Factors
- The extra chromosome 21 leads to the physical features and developmental challenges that can occur among people with Down syndrome. Researchers know that Down syndrome is caused by an extra chromosome, but no one knows for sure why Down syndrome occurs or how many different factors play a role.
- One factor that increases the risk for having a baby with Down syndrome is the mother’s age. Women who are 35 years or older when they become pregnant are more likely to have a pregnancy affected by Down syndrome than women who become pregnant at a younger age. 3-5However, the majority of babies with Down syndrome are born to mothers less than 35 years old, because there are many more births among younger women.6,7
Diagnosis
There are two basic types of tests available to detect Down syndrome during pregnancy: screening tests and diagnostic tests. A screening test can tell a woman and her healthcare provider whether her pregnancy has a lower or higher chance of having Down syndrome. Screening tests do not provide an absolute diagnosis, but they are safer for the mother and the developing baby. Diagnostic tests can typically detect whether or not a baby will have Down syndrome, but they can be more risky for the mother and developing baby. Neither screening nor diagnostic tests can predict the full impact of Down syndrome on a baby; no one can predict this.
Screening Tests
Screening tests often include a combination of a blood test, which measures the amount of various substances in the mother’s blood (e. g., MS-AFP, Triple Screen, Quad-screen), and an ultrasound, which creates a picture of the baby. During an ultrasound, one of the things the technician looks at is the fluid behind the baby’s neck. Extra fluid in this region could indicate a genetic problem. These screening tests can help determine the baby’s risk of Down syndrome. Rarely, screening tests can give an abnormal result even when there is nothing wrong with the baby. Sometimes, the test results are normal and yet they miss a problem that does exist.
Diagnostic Tests
Diagnostic tests are usually performed after a positive screening test in order to confirm a Down syndrome diagnosis. Types of diagnostic tests include:
- Chorionic villus sampling (CVS)—examines material from the placenta
- Amniocentesis—examines the amniotic fluid (the fluid from the sac surrounding the baby)
- Percutaneous umbilical blood sampling (PUBS)—examines blood from the umbilical cord
These tests look for changes in the chromosomes that would indicate a Down syndrome diagnosis.
Other Health Problems
Many people with Down syndrome have the common facial features and no other major birth defects. However, some people with Down syndrome might have one or more major birth defects or other medical problems. Some of the more common health problems among children with Down syndrome are listed below.8
- Hearing loss
- Obstructive sleep apnea, which is a condition where the person’s breathing temporarily stops while asleep
- Ear infections
- Eye diseases
- Heart defects present at birth
Health care providers routinely monitor children with Down syndrome for these conditions.
Treatments
Down syndrome is a lifelong condition. Services early in life will often help babies and children with Down syndrome to improve their physical and intellectual abilities. Most of these services focus on helping children with Down syndrome develop to their full potential. These services include speech, occupational, and physical therapy, and they are typically offered through early intervention programs in each state. Children with Down syndrome may also need extra help or attention in school, although many children are included in regular classes.
Other Resources
The views of these organizations are their own and do not reflect the official position of CDC.
- Down Syndrome Research Foundation (DSRF)
DSRF initiates research studies to better understand the learning styles of those with Down syndrome. - Global Down Syndrome Foundation
This foundation is dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. - National Association for Down Syndrome
The National Association for Down Syndrome supports all persons with Down syndrome in achieving their full potential. They seek to help families, educate the public, address social issues and challenges, and facilitate active participation. - National Down Syndrome Society (NDSS)
NDSS seeks to increase awareness and acceptance of those with Down syndrome.
References
- Mai CT, Isenburg JL, Canfield MA, Meyer RE, Correa A, Alverson CJ, Lupo PJ, Riehle‐Colarusso T, Cho SJ, Aggarwal D, Kirby RS. National population‐based estimates for major birth defects, 2010–2014. Birth Defects Research. 2019; 111(18): 1420-1435.
- Shin M, Siffel C, Correa A. Survival of children with mosaic Down syndrome. Am J Med Genet A. 2010;152A:800-1.
- Allen EG, Freeman SB, Druschel C, et al. Maternal age and risk for trisomy 21 assessed by the origin of chromosome nondisjunction: a report from the Atlanta and National Down Syndrome Projects. Hum Genet. 2009 Feb;125(1):41-52.
- Ghosh S, Feingold E, Dey SK. Etiology of Down syndrome: Evidence for consistent association among altered meiotic recombination, nondisjunction, and maternal age across populations. Am J Med Genet A. 2009 Jul;149A(7):1415-20.
- Sherman SL, Allen EG, Bean LH, Freeman SB. Epidemiology of Down syndrome. Ment Retard Dev Disabil Res Rev. 2007;13(3):221-7.
- Adams MM, Erickson JD, Layde PM, Oakley GP. Down’s syndrome. Recent trends in the United States. JAMA. 1981 Aug 14;246(7):758-60.
- Olsen CL, Cross PK, Gensburg LJ, Hughes JP. The effects of prenatal diagnosis, population ageing, and changing fertility rates on the live birth prevalence of Down syndrome in New York State, 1983-1992. Prenat Diagn. 1996 Nov;16(11):991-1002.
- Bull MJ, the Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics. 2011;128:393-406.
Child with an extra chromosome |
This year the UN celebrates the International Day of People with Down Syndrome for the second year. It is celebrated on March 21 - and not by chance. After all, it is the presence of an extra chromosome in the 21st pair that causes changes that lead to the onset of the syndrome. Such children develop more slowly than usual, but they are quite trainable and many can even master a profession.
And yet Down syndrome is surrounded by many prejudices and fears. We decided to get first-hand information: Elena Vapnichnaya spoke with a Russian couple, UN employees, whose second child was born with that very extra chromosome.
*****
I have known Alla and Igor for many years, and I even once met their daughter Anya at their place. But we never talked about what it's like to raise a child with Down syndrome. And now, finally, I had the opportunity to ask them about how it was: what they experienced when they were announced the diagnosis:
« I personally had depression. At first, I didn’t have the feeling at all that this was my child. I had a feeling of rejection. But I think the nurses are great. I then read in books about Down syndrome that this, my reaction was a typical reaction and apparently, of course, they knew about it, and when, for example, on the first day they told me to leave it for the night next to me or take it away, I told them to take it away . And in the morning they told me that she was crying, she was bored, well, that is, as if they were trying to make me feel something for her ...".
Alla says that the feeling of rejection passed very quickly, within 3 days, but Igor didn’t have it, he accepted his daughter right away:
“ was, the mood was not particularly, of course, but the question how would such arose: what does not suit me in this in everything? While driving, I realized that I was not satisfied with the reaction of the neighbors, those around me, that they would think something there. And when I understood this, how would it let me go right away, because that’s how everything suits me ...".
According to them, Alla and Igor had no idea of leaving the girl, if only because they immediately felt the support of the doctors. They were explained that there is nothing to be afraid of, that such children live normally:
“ Everyone from afar began to say that this is normal, it’s good, it’s almost as if you were unlucky that you had such a child that the state would support. ...".
On the very first day, a specialist in the field of genetics came, who told what to be prepared for, gave a list of references, immediately scheduled the next visit, after discharge:
“... gave us the addresses of societies where we later went to all sorts of meetings where people like us, with Down syndrome, gathered, and when you are at these meetings, in principle, you feel much better. .. And here comes the heroine of our interview ”..
Anya is 21 years old, but she looks like a teenager. He speaks English, however, he understands something in Russian. A Russian-speaking psychologist advised against teaching her two languages, but Alla and Igor now regret that they did not try. But they are quite happy with everything else - they say that from the very birth of their daughter they were literally passed from hand to hand. Until the age of three, Anya was at home, and then she began to go to a special center for children with various diagnoses. From the age of seven she has been going to school - all this is free, at the expense of the state. I asked what she was studying there:
« The general direction is to make sure that if a person comes somewhere or appears in society, he would behave like ordinary people, would not stand out. And the main thing for them, and so, in my opinion, is to teach a person to live in this society. A: Not that even a person does not stand out, but that she herself, so that she herself, in principle, can serve herself. Well, even I remember, she was small, we bought her sneakers with laces, and I could not teach her how to tie her laces, well, no way. I explained it to her 100 times, I just didn't know how to explain it to her. And we, in the end, told the teacher, and literally a few days later she came home and tied these shoelaces. I mean, they might know how, but they taught her. She was taught to swim. At the age of seven, they had a pool at school, they went to the pool once a week, they taught her how to swim there. I don't know how they did it. It's a mystery to me0014".
Once a week, the children are taken to the store, they help them make a shopping list, find the right goods. They are taught things that we, the so-called normal people, do not perceive as a special skill - how to wash our hands, how to brush our teeth, how to take a shower. But not only. They are taught how to interact with others - again, what we do instinctively. For example, when Anya was three years old, the teachers noticed that she did not know how to react to aggression: she sits and cries on the floor, but they did not see who pushed her, what happened. And after that they taught her how to scream - that if someone pushed her, touched her, she should scream. And she learned to speak up."
It turns out that Anya, like ordinary schoolchildren, is given homework:
« She is given lessons, we do lessons every day, yes. She can read with us, count on a calculator, draws interesting drawings, original .
On Saturdays Anya goes to a special program where she does art, sports, music and theatre.
Anya tells me about her cats. And I ask my parents when the feeling came that this is your beloved child, for whom, without hesitation, I am ready to give my life. They say that, in general, it was like this from the very beginning, but Alla remembers one moment:
« In the year she fell ill, she had croup and was admitted to the hospital... . one and a half, right? And she, in principle, could die, because it was very serious, we just managed to get there on time. And for a week she was in the hospital, and we took turns spending the night there. And I remember at that moment I was really scared that, if, indeed, something could happen and I really wanted, I asked God that everything would be fine .
Anya has moderate Down syndrome and will never be able to live on her own:
« Naturally, she will always be with us, we can't even go anywhere and we can't leave her alone at home. Naturally we know this .”
Anna: yes ! ..
LV: Very convincing .
I: But on the other hand, because there are all these state programs, there is such a feeling of confidence in the future ...
Igor answers a question that I hesitate to ask: what will happen when they cannot take care of Anna. It turns out that already now, in the event of a so-called “crisis situation”, Anya can be registered in one of the programs that take care of those who are left without parents. They live in groups of 5-6 people under the supervision of educators and the choice of such programs is very wide. So her parents are calm about Anya's future.
I ask them how it is for them to be together in public:
« Here they perceive it as absolutely normal. We feel very comfortable here, because she is perceived here as all steel: no one looks at her, no one, as it were, pays attention, that is, you think that you are with an ordinary child. She does not attract any attention from those around her, sometimes even the opposite - someone will talk to her about something, say something pleasant to her. But it happened that when we were on vacation in Moscow, it was different there, that we were going to the subway with her, the whole carriage was looking at her, not looking up, and this was not very pleasant. In principle, we kind of try not to pay attention. Well, because, apparently, these children and people are here, they are among other people and they live in society, and in our country they have just begun to appear in society. I: But on the other hand, now there are more programs and they began to be shown, and I think that everything will change. In recent years, here in the year 2000, we are coming and everything has changed very dramatically, I would say ".
In general, Igor and Alla look like quite happy parents. He loves Anechka and her older brother Anton:
« And in principle, living with such a child is a pleasure. - Why? - Well, because she is kind, she is cheerful, good. She always loves everyone, she loves everyone. She may be, well, all people can be irritated, she can cry, but this is not her state. Her normal state is always positive. And somehow, being with her, I don’t know, you just feel better ".
I asked Alla and Igor what they would say to those who had a child with Down syndrome:
« with this specific diagnosis and listen to them. You don’t have to listen to anyone at all, because it’s very easy in the first hours, in the first days of a person to convince of anything, that you will live with a monster .. A: then people will regret it, because if I I did, I know that I would regret it all my life and, thank God, I didn’t, I’m very glad ".
Down syndrome: myths and truth
The syndrome was first described in the 1860s by the English physician John Down.
The real causes of the syndrome became known only in the middle of the twentieth century. In 1959, the French physician Jerome Lejeune found out that Down syndrome is precisely a chromosomal anomaly that occurs randomly.
International Down Syndrome Day has been observed since 2006. The day March 21 was chosen in accordance with the fact that such people have three copies of the 21st chromosome.
How and why does Down syndrome occur?
Down's syndrome occurs when, during the divergence of chromosomes during the formation of gametes (eggs and spermatozoa), a child receives an extra 21st chromosome from one of the parents.
According to statistics, one child with this genetic anomaly is born for every 700-800 children. Such children are most often born to elderly mothers over 35 years old. The behavior of the mother, her lifestyle and the state of the environment do not affect this in any way.
People with Down syndrome have characteristic distinguishing features - a flat face with slanted eyes, a short skull, an open mouth, short limbs, a small nose, a short wide neck, a flat nape.
The average life expectancy of people with this diagnosis is slightly less than the normal life expectancy of a person - 50 years.
There are many myths associated with people with Down syndrome. Some of the most popular myths will help us to debunk the specialists of the Russian fund "Downside Up".
Myth #1: this will never happen to my family
“A child with Down syndrome can appear in any family, it is a genetic accident,” says Elena Lyubovina, Downside Up specialist.
According to WHO (World Health Organization) statistics, one in 700 newborns in the world is born with Down syndrome.
This ratio is the same in different countries, climatic zones, social strata. It does not depend on the lifestyle of the parents, their health, bad habits, nutrition, wealth, education, skin color or nationality. Boys and girls are born with the same frequency. Parents at the same time have a normal set of chromosomes.
People with Down syndrome are not “victims”, they are not “suffered” or “affected” by the syndrome. It is incorrect to call a person with an extra chromosome "down".
Myth #2: Children with Down syndrome should be institutionalized
“That's not true. There is a special term that describes what happens to a child in special institutions - hospitalism syndrome, ”say the fund’s specialists.
The separation of an infant from its mother and its stay in a special institution causes a number of serious disorders of mental and personal development. Hospitalism leaves a negative imprint on all spheres of the child's personality, inhibiting intellectual, emotional and physical development. And it has nothing to do with having Down syndrome.
According to statistics, in Russia 85% of newborns with Down syndrome are abandoned by their parents.
The foundation's specialists justify such a high percentage of refuseniks by the fact that parents do not have complete information about the syndrome. Plays a big role and psychological pressure from others. “When you are knowingly informed that this child is a vegetable from the garden, that he will not recognize you, that he will die after 1. 5 years of life, naturally, the choice will not be in favor of the child,” says Elena Lyubovina.
Most of the parents of the Downside Up Early Intervention Center confirm that they have experienced such an attitude towards their child.
“The fact that my daughter was born with Down's syndrome, I was informed right on the delivery table, and they immediately offered to write a refusal,” recalls Natalya Mezyanova, mother of five-year-old Masha. "Why are you ugly?! You are young, you will give birth to a new one, ”another parent, who asked not to be named, tells about the words of the doctors.
“A call and a visit to the Downside Up Early Intervention Center made a difference. “I saw and learned that such children are NORMAL. They are trainable. Each has its own character. They also rejoice or grieve. They understand adults, communicate, know how to make friends, ”the woman says.
Myth #3: Down syndrome is a disease, it needs to be treated
“Down syndrome is incurable because it is NOT a DISEASE, it is a syndrome,” emphasizes Elena Lyubovina, the agency's interlocutor.
A syndrome is a collection of symptoms.
Down syndrome is a genetic condition determined by the presence of an extra chromosome in human cells.
“This extra 47th chromosome dictates the appearance of a number of physiological features, due to which the child will develop more slowly and go through the stages of development common to all children a little later than their peers,” the specialist tells about the syndrome.
Down's syndrome has comorbidities: decreased vision, problems with hearing and speech. In 60% of children with an extra chromosome, heart disease is detected. It is important to understand, Lyubovina says, that all this can be corrected: “everything is operable and today it is successfully treated at an early age.”
Myth No. 4: people with Down syndrome are not capable of learning
“This myth is actively supported by research that was conducted in closed specialized institutions, but any child cannot develop effectively there, because he is deprived of the main stimulus - parental love,” — count at Downside Up.
Many years of foreign practice and their own experience in the education and development of children with Down syndrome, and most importantly, the successful stories of Downside Up graduates, allow the Foundation's specialists to draw positive conclusions.
Unpromising (according to doctors) a child sits down by himself at one year, walks at two and a half - eats with a spoon and pronounces the first words, at four - shows character, learns to help around the house, ready to go to kindergarten, and then and to school.
He can speak foreign languages, master the computer and play sports.
Myth #5: A family breaks up because of a child with Down syndrome
Indeed, it happens. Those who want to convince them to abandon the child are very fond of talking to mothers about this. But they never talk (probably because they don't know yet) about what often happens to families who have given up a child. Most of these families cannot maintain relationships.
And families in which parents have adopted their special child live an ordinary life of an extraordinary family.
Myth #6: People with Down syndrome are a danger to society
Many mistakenly believe that the good-natured behavior of people with an extra chromosome is abruptly replaced by fits of uncontrollable rage. People with Down syndrome are often called inadequate and accused of sexual aggression.
“It's not like that. Men with Down's Syndrome are not fertile. We do not know the crimes committed by people with Down syndrome,” Downside Up experts say.
These people are able to set an example of sincere love. They are usually affectionate and friendly. “Everyone has their own unique character. The mood, like any of us, is changeable, ”says Elena Lyubovina.
Myth #7: There are far fewer people with Down syndrome in Russia than abroad
About two and a half thousand children with Down syndrome are born in our country every year. There are no official figures on how many people with this syndrome live among us today.
“We just don't see them. 85% of these children remain in infant homes after birth. Most, according to Western statistics, do not survive there for up to a year. Those who survive end up in nursing homes or psychiatric clinics,” says Elena Lyubovina.
People with Down syndrome are some part of Russia's 13 million disabled people... "If the state doesn't even know how many such people there are, how would it know about their problems and difficulties," Downside Up's specialist believes.
In modern Russia, early intervention services for children with Down syndrome are at the initial stage of development. Families in which children with Down syndrome grow up suffer from a lack of pedagogical and social support, and most of all from the negative attitude of society.
In the West, people with Down syndrome are full members of society.
People with Down syndrome can have a normal profession
In the US, children with Down syndrome are not even one percent abandoned, and guardians stand in line - children with Down syndrome are the most comfortable among children with disabilities.