A child with Down syndrome is a special parental care
Jun 21, 2018
When Marta podnatuzhilas for the last time and I pulled the precious head out of the birth canal, a short, thick little hand with a twisted little finger popped out. As if struck by a lightning stroke, I realized that we became parents of a child with Down syndrome. We got the wrong kid we were expecting.
Bringing up Stephen, we realized that a child with special needs draws from us a special type of parental care. For children with special needs, the principle of interrelationship truly appears in all its splendor. While Stefan develops special skills, we develop special skills. He reveals the best in us.
These are the most common deviations in development most often worried about parents.
Down Syndrome( formerly called Mongolism), named after Dr. Daun who described these children in 1866, takes place in one case of seven hundred genera. The risk of giving birth to a child with Down's disease increases with age of the mother:
• in women under 25 years - 1 case from 2000
• in women aged 30 years - 1 out of 1300
• in women aged 35 years - 1 in 400
• inwomen aged 40 years - 1f90
• in women aged 45 years - 1from 32
• in women aged 50 years - 1-8
Depending on how they are submitted, these figures can be frightening. If the doctor tells the mother: "At the age of thirty-five, you have a five times higher risk of having a child with Down's syndrome than at the age of twenty," this may be enough to scare many mature mothers to such an extent that they thinkwill not be able to conceive. That's how I set out the risk factors for my patients, if they ask. At the age of twenty your chance of not to give birth to the child with Down syndrome was 99.95%;at the age of thirty-five your chances are 99.75%.Is not that true, this figure inspires greater peace of mind? That is why, in my opinion, the "horror of thirty-five years" is a bit early;You can start worrying at forty-five, maybe. Even at the age of forty-five, your chances of giving birth to a child without the Down syndrome are 97%.So more overage pregnant women these figures should cheer.
Because this is the risk, we consider it impermissible to intimidate thirty-five-year-old mothers and force them to prenatal diagnostic tests( amniocentesis or chorionic biopsy).Weigh such facts: at the age of thirty-five your statistical chances of having a child with Down's syndrome are 0.25%.But the risk of damage to the normal fetus during the test can be about 1%.Currently, the
test for alpha-fetoprotein is inaccurate for the prenatal diagnosis of Down's syndrome and is becoming a source of enormous and completely unnecessary experiences for expectant parenthood. Whether you will pass tests for prenatal diagnosis or not - it's your own business, and it's up to you, consulting your physician. But remember, your doctor is legally obliged to offer these tests to any mother at the age of thirty-five years or older. When deciding, take into account the above figures.
Why does Down syndrome occur?
Normally the sperm and egg contain twenty-three chromosomes. When they are fertilized, they combine and form a cell with forty-six chromosomes. Sex cells - both the sperm and the egg - undergo a process of normal division, the so-called meiosis, which results in the formation of exact half copies of the original cell. Sometimes, accidentally, unequal division occurs during meiosis. One cell gets one less on one chromosome and dies. Another cell gets one more chromosome and survives. If this cell( in 95% of cases it is an ovum) merges with a sperm( or egg), the resulting fertilized egg contains forty
with seven chromosomes. In the case of Down's disease, this extra chromosome is numbered 21, so geneticists use the term "trisomy for 21 pairs of chromosomes" for this syndrome, meaning that the cells have three chromosomes number 21. There are other variants of trisomy that usually result in miscarriage or early deathchild. Why one extra chromosome causes the symptoms of Down syndrome is unknown. This unequal division of cells is called non-divergence. It occurs by chance and is the cause of chromosomal abnormalities in children with Down syndrome in 95% of cases.
The rare genetic form of this syndrome( occurring in such children in 2-3% of cases) arises due to translocation. In this case, one of the chromosomes under number 21 parted with his partner and attached to another chromosome, which makes it seem that the cell has only forty-five chromosomes. However, a person with such cells is normal, because he has all the genetic material from forty-six chromosomes. But when the sperm or ovum from this normal person, with the displaced chromosome number 21, merges with another germ cell( sperm or egg), the resulting fertilized egg has, as it seems, forty-six chromosomes, but in reality three chromosomes number 21.determine what type of chromosomal abnormality in your child, the geneticist analyzes your child's chromosomes in a sample of blood taken for analysis. The type of chromosomal abnormality, nondisjunction or translocation, can be accurately established by looking at the location of chromosomes in your child's blood cells. Although in most cases translocation occurs by chance, sometimes one parent is an carrier of cells that can contain a translated chromosome number 21, and therefore has an increased risk of having a child with Down's syndrome again. If a chromosomal abnormality is detected by the type of translocation when a child's blood is analyzed, the blood tests of the parents will show whether it happened by accident or whether one of the parents is a carrier and therefore has the risk of having children who inherited this anomaly in the future. Another type of Down's Syndrome is called mosaic; this means that some cells of the child have a normal set of chromosomes, and others have an extra chromosome number 21. That's why not one single cell from your child's blood is being analyzed. Sometimes, but not always, a child with mosaic Down syndrome is affected in a less severe degree.
Why are we?
Chromosomal abnormalities are random. You did not cause an anomaly yourself by what you did or did not do during pregnancy. A woman is born with a certain number of eggs and does not produce new ones during her life. The longer an egg lives, like any tissue, the more likely it is that something is broken. Why this occurs with the sperm, is covered with greater mystery. New spermatozoa are being constantly developed. There is no such thing as an old sperm. For some unknown reason, the risk of nondiscrimination in spermatozoa increases in men after fifty.
Possible health problems
Children with Down syndrome are at risk of a variety of diseases. Among them:
• Heart defects: about 40% of children with Down syndrome are born with an irregularly formed heart. Most of these defects are now corrected surgically.
• Bowel defects: About 4% of these children are born with an upper-bowel obstruction, known as duodenal atresia. This defect should be surgically eliminated to ensure food passage.
• Hypothyroidism: occurs in about 10% of children with Down's syndrome. Since the likelihood of this disease increases with age and may not be obvious on examination, it makes sense to check the functioning of your child's thyroid gland at least once every two years.
• Eye diseases: Many children with Down's syndrome have a variety of eye diseases, such as strabismus, myopia, farsightedness and cataracts.
• Hearing problems: About 50% of these children have this or that degree of hearing loss. This is further promoted by increased susceptibility to inflammation of the middle ear.
• Vertebral instability: in 10-20% of these children, the first two vertebrae, at the junction of the vertebral column with the occipital bone of the skull, are unstable( the so-called instability of the atlanto-posterior joint).Children with this disease risk getting spinal cord injuries during a push in contact sports. All children with Down syndrome should undergo a radiographic examination of the upper spine before entering school( between four and five years) and before getting permission to participate in contact sports.
• Frequent colds: in children with Down's syndrome, immunity is reduced, which, combined with small comparative nasal passages, makes them more vulnerable to inflammation of the sinuses( sinusitis) and ear inflammation.
. How smart are these children?
Children with Down's Syndrome have a lower than average intelligence;some are more backward than others. With early intervention and special education, many of these children attend school in regular classes. Delay in speech development is the most noticeable defect. As these children go through the milestones of motor development not so fast, it's like watching an amazing film, which is recorded, as development unfolds, in slow motion. Since parents can not take developmental milestones as a matter of course, child development causes more anticipation and delight.
What they may miss in training, these children make up in full communication. Like all children, children with Down syndrome have good and bad days. But in general, these children are affectionate, loving and just happy. Many constantly share hugs and kisses and radiate carelessness. Their self-forgetful and caring behavior is so contagious that others involuntarily begin to wonder who is really normal. Verily, children with Down's syndrome have a good side.
Caring for these special children
With these children, the parental attachment-based approach truly shines. It gives you the ability to understand what special needs your child has, like you have a sixth sense. You will need a deeper intuition and observation, since the signs given by your child may not at first be easy to understand.
If you evaluate how your child looks or behaves compared to other children, you will tear your heart apart. Faced with the reality that I became the parent of a child with special needs, every time I looked at the child in my office, I thought: "And our child is not at all like this and behaves differently than this."In fact, I was hammering my head with thoughts that made my heart sink, that our child was worse than other children. A real breakthrough happened when I found the ability to focus on the special qualities of our child, and not on what he lacks in comparison with other children.
Find out what assistance you can get in your area, for example, whether there are early-learning programs. Think about joining the parents support group for children with Down syndrome if there is one in your area. You will be surprised at what practical tips and discoveries parents will share with you through the same situations as you, who have coped with difficulties and even received a lot of
from them, able to share their experience. One mother of a child with Down's syndrome wrote to us: "Stefan will bring flashes of color into your life that you did not even know existed."Some parents immediately rush to support groups and government agencies and find out as much as possible about how to raise a child with special needs. Other parents feel more comfortable choosing only three or four sources of support, because they decided that it would be better for their family if all lives do not revolve around Down's syndrome and if they, instead, let their child with special needs into the mainstreamfamily life. They believe that this approach places greater emphasis on the individuality of their particular child. For example, when Stefan strokes my cheek with his palm, the tenderness of his soft, gentle hand is not like any other touch I've ever experienced. Children with special needs can bring special gifts to the family. I know from experience that parents who practice affectionate care gain harmony with their special needs child and develop incredible sensitivity to him. This sensitivity goes into their social, marital and professional life. This sensitivity is also contagious for older children. Raising a child with special needs is the business of the whole family. I have noticed more than once that when older brothers and sisters start helping to care for their brother or sister who have special needs, there is no trace of their usual egocentrism and selfish nature, which allows them to become caring and sensitive children showing miracles of self-giving. In general, a child with special needs can raise the level of sensitivity of the whole family.
On the other hand, caring for an incomplete child can cause discord in family life. It is necessary to maintain some balance in the care of the child. Some mothers are fully focused on the special needs of their child and leave the needs of other family members. For the mother of a child with special needs, it is perfectly natural to feel: "My child so needs me;and my husband is already a big boy and can take care of himself. "It is necessary that both spouses take care of each other so that they can better take care of their child together.
Advice to friends and relatives. The worst thing you can do is express sympathy for the parents of a child with Down syndrome. Statements like: "I'm so sorry. .." humiliate the child - like his parents. In the end, the mother gave birth to an
child, perhaps not quite "normal" by our standards, but a unique person who will contribute to this family and society. After the birth of our child, when a string of friends was drawn, the most pleasant thing that I remember, I heard from the mouth of a grown-up grandmother who said: "My wish is for you to receive the joy of your special child."