Down syndrome day The fear of trisomy 21

Down Syndrome Day: Many mothers abort on trisomy 21

03/21/2015

Smiling children with Down's syndrome on billboards and in commercials are popular when it comes to disability. On the other hand, with expectant parents the fear is often great „Downie“ to get. If the diagnosis is trisomy 21 before birth, nine out of every ten women abort.

March 21 is World Down Syndrome Day
March 21 is World Down Syndrome Day. On this day, events are organized around the world to raise public awareness of the topic. The date for the day indicating Trisomy 21 was chosen deliberately: March 21 symbolizes the threefold presence of the 21st chromosome. Already in advance, there were numerous reports on the subject, such as that children with Down's syndrome are not sick but only slower. The news agency dpa reported on the occasion of the action day on the subject and also refers to those affected.

Chromosome 21 is present three times
Irma is now one year old. Her mother had the term shortly after birth „Down syndrom“ googled. There were a lot of entries because of the upcoming World Down syndrome tag, but it did not help with the research of the diagnosis. According to dpa, she said: „You can also kill yourself.“ The small Irma has the chromosome 21 three times instead of twice and thus has the Down syndrome. Her parents did not know this before birth. Ms. Schulz did not belong in the risk group of the late-gesturing 35. Anyway, not every older pregnant woman has a so-called first trimester screening or an amniocentesis.

Nine out of ten women abort
If the diagnosis „Trisomy 21“ However, according to the figures, nine out of ten women abort. „There is incredibly much fear of chromosomal abnormalities“, explained human geneticist Elisabeth Gödde. „The risk is completely overestimated.“ Only up to four percent of all babies would have any anomalies at all and only a fraction of them would be genetically determined. „Down syndrome is the prototype for the disaster“, said Gödde, Senior Physician at the Vestische Children and Youth Clinic Datteln. „In all enlightenment: It is a completely wrong world.“ Thus, the risk of having a child with trisomy 21 is disproportionate to the parents' anxieties about it.

Support for those affected has improved
The „Downies“, as they call themselves occasionally, according to Elzbieta Szczebak from the German Down Syndrome Info Center „very good and grateful sympathizers“ on pictures and posters whenever it comes to issues such as disability and inclusion. Currently, up to 50,000 people with Down's syndrome live in Germany. In the meantime, it is relatively well-ordered for its promotion and social acceptance. „Compared to the past, we live on an island of bliss“, said Bernd Breidohr, who founded the first Karlsruhe working group Down syndrome 15 years ago. The now 68-year-old is father of a now 41-year-old son with trisomy 21, who can read and write, works in a grocery store and has a girlfriend. Breidohr explained that the time after birth was very difficult: „We had no contact person, no help, nothing.“ Today things look different. „If you want to promote your down child, you will find many offers.“

„Life wants to live“
Some experts are wary of the increasingly sophisticated prenatal diagnostics. „Without wanting to evaluate it morally: It is certainly not in the child's interest. Life wants to live“, said the pediatrician Matthias Gelb, who is himself father of a 25-year-old son with Down syndrome and head of the Consultation Down syndrome at Olgahospital Stuttgart. On the one hand, waiting for a result often plunges parents into painful uncertainty and, on the other, threatens long-lasting guilt after being aborted. That expectant parents whose child will be born with Trisomy 21, do not have to worry, have suggested adults with Down syndrome pregnant women in a video.

No exact statistics in Germany
Specialists in the non-invasive prenatal diagnostic blood test (NIPT), which have been available for some time now, see completely new risks. Thus, a maternal blood sample can be examined for certain genetic defects of the fetus. Although it is determined what may be sought, but critics fear that will increasingly arise the desire to look for very specific genetic characteristics of the embryo. Therefore, more exact rules are required. Nationwide, every 600th to 700th child still has a trisomy. Because of the increasing use of early detection methods, there are more abortions, but also more and more older mothers with a higher risk of genetic defect of the embryo. As Gödde explained, there are no exact statistics in Germany about the findings in medically indicated abortions. Even with a second pregnancy, Susanne Schulz does not want to be tested. Her twelve-month-old Irma has survived a severe heart operation well since birth, as well as cardiac arrest and subsequent resuscitation. „Just let everything go“, said the 32-year-old. But above all a thought scares her: „That Irma will be laughed at some point.“ (Ad)