Iceland will become the first “Down-free” country in the world. For five years, in fact, in the ice island there are no more children born with Trisomy 21, the chromosomal condition caused by the presence of a third copy (or a part of it) of the chromosome 21. This is testified by an Icelandic doctor, Peter McParland that, during a conference at the National Maternity Hospital, has highlighted the fact that in his country “every single child, one hundred percent of those diagnosed with Down Syndrome, is aborted”.
The shocking data is the result of the fact that in the island of northern Europe, the prenatal screenings are no longer perceived as diagnostic means on the health of the unborn child, but rather as a prelude to a possible interruption of pregnancy where the foetus would have genetic anomalies.
Fear for one’s own health and for the future of the child encourage Icelandic women to have abortions. In the volcanic island, in fact, the Voluntary Interruption of Pregnancy is allowed in the case of deformity – and Down Syndrome is included in this category – up to the 16th week. Practically, a child already formed having the size and weight of a packet of cigarettes!
But how many children, in percentage, have this syndrome? According to the World Health Organization, the incidence of trisomy 21 is estimated to be within the range 0.9 ÷ 1 case every 1000 individuals born alive. In the United States, the Centre for disease prevention and control provides a higher estimate, with approximately 1 child in 691.
The number of abortions
With a population of about 330,000, Iceland has on average only one or two children born with Down syndrome every year, usually because their parents have received wrong pre-natal testing results, which ensured a “healthy” new-born. The selective abortions, instead, represents 100% of cases where the test results are positive: in practice, less than 5 cases per year.
In countries with a higher population, the situation is not much better. According to the latest data, in fact, the “termination rate” of foetuses with Trisomy 21 in the United States is of 67%: according to the National Down Syndrome Society, in America are born only 6,000 children with the syndrome every year. In France, the selective abortion is carried out in 77% of the cases. In Denmark, upto 98%: in 2015 only 31 children were born. The Scandinavian country will then become the second “Down-free” country in the world.
But what happen in Italy, the cradle of Christianity? In the Beautiful Country one child every 1,200 is born with DS. Before the war, their life expectancy was 10 years; today is about 60. Since 1979 there is the Italian Association of Down Persons (Aipd) born with the twofold aim of supporting the families and help young people to become independent.
In Terris interviewed Anna Contardi national coordinator of Aipd.
How do you comment on the situation of Iceland?
“Outside the statistics, this is a phenomenon linked to two distinct aspects. The first is cultural: the search for the ‘healthy and handsome’ child; with prenatal diagnosis, the cases of Down Syndrome (DS) are virtually certain and so many people choose abortion. But the theme ‘birth’ must be connected to a second aspect, the one of ‘image’. What is the opinion of the people who live in that particular country about down people? What prospects of life and what social opportunities do these people have there? The final choice, that anyway is individual, is also affected by the image and the inclusive approach that exists in that country. The second aspect is ethical: early prenatal diagnosis very often does not serve for prevention but is simply the antechamber of abortion”
What are the differences with Italy?
“The situation in Italy is quite varied. I have no statistical data, but I have an experiential data: working with people with DS from 36 years and over, the last few years I have found different families that have decided to carry on their pregnancy after a diagnosis which has revealed the presence of a Down child. What is behind these choices, that are certainly minority? The majority of the families, even in Italy, decides to terminate their pregnancy for the fear of carrying on a family where there is a child with a disability, many others do not do it. The difference lies in the fact that the image and the perception that the future parents have of people with Down Syndrome has changed a lot. Therefore, if 20 years ago the news of expecting a child with DS gave the idea of something ‘dramatic’, today there is a more possibilist image: it can be seen that people with DS can reach a certain level of autonomy and that for them there is a potential social inclusion and employment. Ultimately, in Italy not all people decide to do the amniotic fluid test, and not all the people who have done the amniotic fluid test decide then to interrupt the pregnancy in case of DS for the more inclusive image that there is in our country”.
As Aipd, which projects are you currently carrying on?
In these last two years we have proposed a new project for the job inclusion. In Italy, about 13% of adults with Down Syndrome work and it is a growing phenomenon: simple but genuine jobs such as a waiter or cleaning in hotels.
The new international project promotes working placement in the hospitality sector. We created a label, “Valuable”, for all the hotels and restaurants that are willing to accept in apprenticeship and then also hiring people with intellectual disabilities. The brand has been launched, now in Spain, Portugal and Italy; about eighty structures have already joined and we are proposing it in other countries such as Hungary, Germany and Turkey.
The second project is a promotional work done directly to people with DS in relation to the care of their health and their physical form. To this end, we have created a very simple application for Smartphones with which people can self-monitor. The app is called ‘Fit’. It is free and available for all to check their diet and their nutrition. We have already experimented it with 72 people with Down Syndrome, combined with an educational path to make them aware of the importance of eating well and move in order to have a healthier life”.
And, in substance, even happier. At least here in Italy, where children with DS are still allowed to be born.