About 50 years ago, people with Down syndrome had a life expectancy of less than ten years. Today it is around 60 years old. Many of them die of dementia.

Children with Down syndrome develop more slowly and differently than others, have special abilities for it.

Children with trisomy 21 not only look different from children without Down’s syndrome . They’re different. Their overall development is slower than that of children without trisomy 21. This affects motor skills, language and mental development, and they struggle with many illnesses from the beginning. About 50,000 affected people live in Germany. 
About 120 different disease symptoms occur especially in children with Down’s syndrome. These include mainly heart defects. That was a big problem a few decades ago. “Congenital heart defects can be operated much better today than they were a few decades ago, so life expectancy is now much higher than it was in the 1970s,” says Gerhard Hammersen. He is the honorary director of a Down Syndrome Outpatient Clinic in Nuremberg. He practiced there for a long time as a pediatrician at the Cnopfschen Children’s Hospital and followed the development. 

Something has changed

About fifty or sixty years ago, heart surgery was a rare occurrence in children with Down syndrome, and complications often occurred even with surgery. “I experienced a 16- or 17-year-old girl who was born with a complex heart defect,” says Hammersen. At that time they had just begun to operate such cases. “Since she was 14, she suffered more from her heart failure and vascular changes, she had infections, the surgery was postponed, and then it was too late, and she died painfully,” recalls Hammersen. “This is a combination that we thank God today, we do not live anymore.”

The medicine has learned

Down syndrome blood test (picture-alliance / dpa / T. Kleinschmidt)A blood test shows if the child may be born with Trisomy 21

If necessary, children with Down’s syndrome are now operated on in their first year of life. So it can not come to complications later. In the past, it was not uncommon for certain heart problems to appear at puberty because the child had not been operated on at the earliest age. “In the 1980s, the medical profession learned that children with trisomy 21 need to be treated differently, and I think there was a different attitude towards people with Down’s syndrome at the time, and today we know more,” says Hammersen.
But it’s not just about the heart. Often the gastrointestinal tract is affected by the disease, such as when the duodenum is not permeable. “These children have to be operated on the second or third day of life,” explains Hammersen. Meanwhile, this is hardly a problem and ultimately helps to a longer life. Often, however, it is not done with surgery. Other diseases include, for example, the hematopoietic system. This includes leukemia.


People with Down’s syndrome are significantly more likely to suffer from leukemia than people without trisomy 21. And there too, the medical profession had to learn a lot. “Children with trisomy 21 develop a special form of leukemia during the first four to five years of life, which is uncommon in children without trisomy 21, but relatively common in people with Down’s syndrome, a leukemia in people with trisomy This is a reasonably favorable course of treatment, and accordingly it can be treated with a much milder form of chemotherapy than is the case in children without Down’s syndrome.
“There used to be a question of whether or not to give these children chemotherapy at all, and it was thought that these children could not intellectually understand what we were doing to them with this treatment Body intervenes, “explains Hammersen. In a toddler without Down’s syndrome, however, such treatment would not have been called into question, “continued Hammersen. 

A model with Down syndrome among other models (Reuters / A. Kelly)Madeline – A model with Down syndrome at New York Fashion Week

The expectations have changed

In the 70s and 80s, the attitude towards people with trisomy was different than it is today. Many – including physicians – have hardly believed in people with Down syndrome. Today, we know that if people with Down syndrome receive adequate support, they can develop well and become relatively independent. “Many people with Down syndrome live in adulthood in adulthood, so maybe once or twice a week, a social worker or caregiver might come by, but otherwise they live relatively independently, something they could not have imagined,” says Hammersen.

Smarter than many believe

Efforts are also being made today to promote creativity and to integrate people with Down Syndrome into working life as much as possible. This is often difficult, but usually not because of people with Down syndrome but because of lack of readiness in society. Many healthy people, for example, do not want to have to deal with colleagues with Down syndrome at work. And finally, there are also missing corresponding posts. 

Sebastian Urbanski - actor with Down syndrome (picture-alliance / dpa / B. Pedersen)Sebastian Urbanski works as an actor. He has Down syndrome.

The development in people with Down syndrome is different and much slower than in people without Down syndrome and in most cases also on a different level, so Hammersen. “But there are also big differences in development from people with no Down’s syndrome – from the one who has problems with a primary school graduation to someone who is a high school graduate and a high flyer, and so is Down Syndrome a corresponding range of development opportunities, “says Hammersen. Maybe these possibilities are only slightly shifted. 

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