Down syndrome

Down syndrome is a congenital condition that will not go away. People with Down syndrome have an intellectual disability. Some have a more severe intellectual disability than others. It is impossible to say in advance how serious the limitation will be.

AN EXTRA CHROMOSOME

Chromosomes are in all our body cells and contain our hereditary properties. Down syndrome is a chromosome abnormality. Normally, people have two copies of each chromosome in each cell. Someone with Down syndrome has not got two, but three copies of one particular chromosome (chromosome 21) in each cell. Another name for Down syndrome is trisomy 21. Of every 10,000 children born, between 11 and 16 have Down syndrome.

DEVELOPMENT

Children with Down syndrome develop more slowly and more limited than average. This is different for each child. It is impossible to predict how the development will proceed. By stimulating children from an early age to grow up, children develop better than before. There are various support programs that parents can use for this. Young children just grow up in the family. They can usually go to regular childcare. Very occasionally a special day center is needed.
Most children with Down syndrome start at a regular school. A small group goes to special education. In regular education, on average, the children learn to speak and read better, and they learn to get along better with others. After primary school, most children go to special secondary education. Some go to a day center. Some adolescents with Down syndrome find that they cannot fully participate after all. They can be insecure, shy and withdrawn. As a result, they sometimes react differently than people around them expect.

Up to about age 30, half of the adults with Down syndrome live at home. Some of the people with Down syndrome live independently, in an assisted environment. Most people with Down syndrome live in small-scale housing projects. Throughout life, people with Down syndrome need guidance and support. How much support they need depends on the severity of the intellectual disability.

On average, people with Down syndrome live to be 60 years old.

WITHIN THE FAMILY

Research shows that almost all parents say that they love their son or daughter with Down syndrome and that they are proud of their child. Most parents (8 out of 10) feel that their child has given them a more positive outlook on life. This also applies to most siblings. They say they want to stay involved in their adult sibling's life later on. There are also families that must deal with problems and experience this as burdensome.

HEALTH

The chance that a child with Down syndrome will die during pregnancy is higher than average. Nearly half of children with Down syndrome are born with a heart defect. This is almost always treatable with surgery. After that, it usually doesn't give them problems anymore. Children with Down syndrome may have a gastrointestinal disorder. They can also be operated on. Children with Down syndrome are more likely to have problems with the respiratory tract, hearing, eyes, speech, and resistance against infection. How serious the health problems are varies from person to person. Adults with Down syndrome develop a form of dementia (Alzheimer’s disease) more often than average and on average at a younger age.

SUPPORT

Children and young people with Down syndrome and their parents can turn to a pediatrician or a down team for support. A down team is composed of, among others, a pediatrician, speech therapist, physiotherapist, and a social worker. Adults with Down syndrome can contact their GP, Down team.

The health insurance reimburses medical care, including any aids, to children with Down syndrome. Parents can also claim all kinds of financial arrangements.

DOWNPOLI

The Amsterdam UMC location VUmc in Amsterdam is part of the Down Center Netherlands, the expertise center for children with Down syndrome. Parents can go to the "Down poli" to obtain care for their child with Down syndrome.
Website Down Center Netherlands

DOWNSYNDROME FOUNDATION

This is a parents' association that promotes the interests of people with Down syndrome and their parents. You can find more information about Down syndrome here. The foundation also supports pregnant women who want to determine for themselves whether they can handle a life with a child with Down syndrome. They receive information about living with Down syndrome so that they can make a decision that suits them. The foundation also supports parents with a newborn child with Down syndrome.

• www.downsyndrome.nl
• Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
• Phone: 0522 - 281 337