Such children have no right to live?
This year 50 years has passed since the epoch-making discovery made by the French physician and scientist, co-founder of the Pontifical Academy for Life, a friend of John Paul II, Prof. Jérôme Lejeune. A tireless defender of human life, from conception till natural death, he dedicated his scientific talent to work on children suffering from the unknown disease, which caused them develop slowly, not like their peers, and their appearances made them be called small monsters or simply idiots. For some time there was even the term ‘Mongol idiotism’ to describe the disease.
Fear, panic, contempt
In the 19th century the English physician John Langdon Down (1828-96) described the set of symptoms, later called mongolism, for the first time. Since then the disease has been called Down syndrome in Poland and the English speaking world. The English physician did not have sufficient tools to discover the cause of this strange disease, which evoked pity as well as panic fear and contempt.
Numerous myths and misunderstandings about this mysterious illness have been created. They have made the parents of healthy children forbid any contacts with their peers who looked slightly different and behaved in a slightly strange way. Additionally, while searching for the source of that specific deformation of children, people began blaming their parents. Not long ago people were convinced that children with Down syndrome were born because of drunkenness or simply bad behaviour of their mothers. Even physicians recommended the mothers who bore children with characteristically round faces, round eyes and ‘horseshoe’ chins to make tests for syphilis ‘just in case’. How humiliating that must have been for the mothers and families… Even in the Church we had to mature to allow the children afflicted with such a complex disability to participate fully in the sacramental life. The discovery of the additional chromosome (third chromosome in pair 23, which made scientists use the term ‘trisomy 21’ from the times of Lejeune), responsible for mongolism in children, has changed completely our attitude towards such children and their families. Prof. Lejeune used to joke that his little friends lacked nothing but on the contrary, they had one chromosome more than other children. They can live, love, be the joy for their families.
I had the occasion to get to know Prof. Lejeune’s family. I invited Mrs Birth several times for the scientific sessions organised on the occasion of the World Day of the Sick, during which she spoke about the extraordinary passion of her husband whose dream was to have his discover change both the children and their families through some effective medical therapy that could weaken the effects of the additional chromosome or simply eliminate them. We do not know whether it is technologically possible but we know that Prof. Jérôme Lejeune opened new, so far unknown, possibilities of genetic therapy. The French scientist believed that his discovery would change the fate of such children and would mobilise our efforts.
But that did not happen fifty years after his discovery. As Jean-Marie Le Méné writes in his shocking book entitled ‘La trisomie est une tragédie grecque. 50 ans aprčs la découverte de la trisomie 21, comment éviter une politique eugéniste?’, the discovery that was to serve the children turned against them. Yes, it is true and today we must shamefully admit that the possibility of genetic identification of Down syndrome has caused that 96% of these children are eliminated through completely legal abortion in France. This also happens in Poland where according to the present bill abortions can be conducted in cases of confirmed deformation or other children’s diseases. The case of trisomy 21 can be regarded as a sufficient cause to make a legal decision that such a child has no right to live and no right to be born. If this does not horrify someone – the great humanist of the 20th century Raoul Follereau would have said – he should not call himself a civilised man and even more – a Christian. The perversion of implementing this wonderful medical discovery is that instead of rescuing people by eliminating danger we have applied a reverse treatment. To get rid of the disabled children with Down syndrome we simply kill them before their births. It reminds us of the most horrified times of the Nazi ideology according to which the disabled children afflicted with mongolism were eliminated. As we read in the book by Jean-Marie Le Méné one of the victims of those times was the cousin of Pope Benedict XVI.
Thanks to the research of Prof. Lejeune we know that trisomy is not a hereditary disease and people suffering from it are not dangerous. The additional chromosome appears as the result of error at re-combination of the parents’ genetic materials. It is simply a failure of nature occurring cyclically no more than 1 per 700 conceptions. Therefore, neither the child nor the adult with Down syndrome pose danger to anyone and have the right to life, education and work. It is true that trisomy 21 causes various effects, including impairment of development, motoric disability, disorder of speech and incidence of various somatic diseases. It only means that those people whom nature has given additional chromosome require slightly more love, care and help. And our attitude towards them will always testify about our humanity. The author of the shocking book poses dramatic questions, ‘How to stop the eugenism that has been legally practised, having the consent of our societies?’ What has happened to our civilisation that the weakest cannot find their places in it?’ For years I have organised annual meetings for disabled children in Zielonka near Warsaw. The participants always include ‘round’ kids who have troubles with speaking, sometimes with moving, but they are always joyful – it is enough to show them friendliness, as many wonderful parents do, parents for whom ‘Down kids’ in their families are not burdens but gifts.