«Children with trisomy 21 can open our eyes»

Mr Zimmermann, how has the number of births with trisomy 21 developed in Switzerland in recent years?

Reliable figures are difficult to obtain. We can assume that between 70 and 90 children with Down's syndrome are born in Switzerland every year. These figures have remained constant in recent years.

With the non-invasive Praena test introduced five years ago, trisomy 21 can be detected at a very early stage of pregnancy. Why are births with trisomy 21 still not declining more sharply?

This is due to the fact that trisomy 21 pregnancies have increased enormously overall. In Switzerland, only the canton of Vaud systematically collects this data in order to feed it into a European study. Here, pregnancies with trisomy 21 tripled between 1989 and 2012. This is due to the fact that many women nowadays only become pregnant at an older age or only finalise family planning at an older age.

How many women keep their child when they find out about the diagnosis?

We have to assume that nine out of ten women in Europe abort their unborn child when they find out that it has Down's syndrome.

Apparently, many people still take it for granted to abort a child if something is wrong.

Do you also see an advantage in the fact that trisomy 21 can now be detected so early in an unborn child?

In principle, it is a huge opportunity to deal with this topic at an early stage. However, this is often missed, as it is apparently still a matter of course for many people to abort a child if something is wrong. Yet it would be so valuable to think about possible disabilities or differences in the child.

After all, something can always happen to a child that leads to a disability, or the child can develop differently than you would have wished. What then? I see another advantage of early diagnosis in the fact that families consciously decide to lead a life with a child with trisomy 21. These parents stand behind their children with a new self-confidence.

The quality of life of children with Down syndrome has improved significantly in recent years. Why?

There has been a clear change in attitude. In the past, people used to consider whether it was worth operating on a child with Down's syndrome or undergoing chemotherapy. Today, there is no longer any question; a proactive approach is taken, risk factors are specifically sought and intervention is carried out as quickly as possible. In addition, efforts are now also being made to support and integrate children with trisomy 21 as much as possible.

Children with trisomy 21 can open our eyes to how we should generally treat children.

What advice would you give to expectant parents who have learnt that their unborn child has trisomy 21?

On the one hand, it's about making all the information understandable and giving parents an idea of what their life with a child with trisomy 21 could look like. I also encourage them to explore their own values, but also their shared values as a couple - and with the rest of the family if they already have them. What does having children mean to us? What values do we want to pass on to them? Then it often quickly becomes clear whether a child with Down syndrome has a place in this family. Incidentally, I recommend this «values work» to all parents, even before they have their first child.

What do you think we can learn from children with trisomy 21?

These children force us to recognise and support them in their maximum individuality. Other children would benefit just as much if they were treated with the same impartiality and individuality. Children with trisomy 21 can open our eyes to how we should treat children in general. If our schools were so individualised and open that trisomy 21 children could also attend them, we would have fewer children taking Ritalin, for example.