Something very unusual happened at a Special Olympics for those with a learning disability. Two sprinters, both of them suffering from what is called Down’s Syndrome, raced side by side. One of them pulled away, then suddenly stumbled and fell. His companion stopped, lifted him up, massaged his knees, embraced him. Together they shared podium honours. Emotion swept the stands. Spectators had been given a lesson in love.

Down’s Syndrome participants focused on one particular spectator. They smothered him with embraces and kisses. They emblazoned him with their golds, silvers and bronzes. He was the man who had defended their dignity, given them a new name and identity, discredited ‘mongolism’ and ‘Down’s Syndrome’ with their racist connections. The former term came from the belief that their physical appearance denoted a link with the inhabitants of Mongolia. The latter term commemorated the mid-19th century Sir Langdon Down, apparently a believer in white racial superiortity, who described the handicap as “mongolian idiocy”.

The hero-spectator was Jerome Lejeune. He was born in 1926 in Montrouge, Hauts de Seine, southwest of Paris. Much of his early education came from his father, a vet by profession and a man of both a philosophic and practical bent. Jerome graduated in medicine at the University of Paris. His hospital experience evoked a compassionate interest in children affected by mongolism, as it was called. He noted both their ‘head’ (their limited intelligence, especially in abstract subjects) and their ‘heart’ (their affectionate nature). What had genetics to say about them?

He began a meticulous research. Assisted by Raymond Turpin and Marthe Gauthier, he focused on chromosomes, the rod-like cell-carriers of genes, arranged in side-by-side pairs. In 1956 Tjio and Leven had established that in most human beings each cell had 23 pairs, ie 46 chromosomes. Early in 1959 the ‘Paris Three’ announced the discovery of a 47th chromosome, physically identical with the 21st pair, in ‘Down’s Syndrome’ children.

This seminal discovery of ‘trisomie 21’, as he called it, gave new impetus to genetics research by Lejeune and others and made the traditional names with their racist nuance obsolete – though rather regrettably Down’s Syndrome survived in Anglo-Saxon circles. It also gave him a doctorate in science and an international reputation. He never discovered a way of preventing the trisomic condition but he did develop treatments that improved intelligence and actvity. His research extended to thyroid and amino-acid deficiency.

In Paris he ran a free consultancy (even after it lost state funding). He became a legend of one-to-one compassion and respect for human dignity to the parents and children who came there from various countries. He worked for several years in the US, where he was a member of the American Academy of Arts and Sciences and received the Kennedy prize from JFK himself. Genetics also brought him to Russia, Israel, Chile and Japan. (He was much taken by the Japanese word for ‘womb’: shi-kiu: ‘infant’s temple’). He worked with a UN committee on congenital abnormalities. In 1974 Pope Paul VI made him a member of the Pontifical Academy of Sciences. In 1982 he was elected to the French Academy of Moral and Political Sciences.

Along with all this he had a family life deeply and openly imbued with Christian faith. He was married to Birthe Bringsted, a Dane, whom he had met in student days. She shared and supported his values and interests. They had five children. They lived in Paris most of the time but also had a house in the countryside south of the city. His sojourns there were precious to him for relaxation, appreciation of life in nature, as well as prayerful and scientific reflection. This pattern of family faith and fulfilment must surely have helped him in the war he waged during his later years: the defence of human life against abortion and other anti-life procedures.

He realised that the great chromosome discovery would be misused in a ‘search and destroy’ technique for the aborting of trisomic babies. This danger and his mission to fight it came poignantly home to him when a tearful trisomic youngster flung himself into his arms and begged him to defend those like him still unborn. He told his genetics team: “I am going to undertake the duty of speaking publicly in defence of our sick…If I do not defend them, I betray them, I renounce what I have de facto become: their natural advocate.”

He was the leading light in establishing the World Federation of Doctors who Respect Human Life (from conception to death), Chairperson of Laissez-le Vivres (Let Them Live), President of the Society for the Protection of Unborn Children. He set up ‘The Houses of Tom Thumb’ for mothers tempted to abort because of materially difficult situations. He became a brilliant defender of human life on platforms, television and radio. Too brilliant for some; after one television programme, his wife overheard a studio executive say to a subordinate, “Lejeune? That swine! But what talent! He’s too good. Don’t invite him again.” Other forms of opposition included threatening graffiti, harassment of patients and labelling of them as ‘monsters’ and disease-carriers, the attempted wrecking of meetings.

What saddened him immensely was the abandonment by so many doctors of their pro-life oath-bound Hippocratic ethos. At an international medical conference on health in New York which was favouring the legalisation of abortion, he did not mince his words: “This Institute of Health in an Institute of Death.” That evening he wrote to his wife: “This afternoon I lost my Nobel Prize.”

He was an adviser and informant of Pope John Paul II on genetics and related issues. They became real friends; to John Paul he was “Brother Jerome”. When in Rome he was the Pope’s guest at table and private morning Mass. He and his wife lunched with the Pope only hours before the assassination attempt on 13 May 1981. Later that year John Paul sent him with another scientist to Moscow to warn the Soviet supremo Brezhnev of the disaster nuclear bombing would be to the human race.

It is very likely that he influenced the text of ‘The Gospel of Life’, which is perhaps John Paul’s greatest encyclical. Here and there in the section about abortion the very strong words of the Pope seem to echo those of Lejeune in his pro-life crusade: an expression perhaps of the remarkable convergence of mind that united them in friendship. In 1994 John Paul made ‘Brother Jerome’ first president of the Pontifical Academy of Life. The Pope knew that Lejeune was dying of lung cancer. The appointment was a farewell accolade from one great Christian humanist to another. He was president for 33 days. His ‘little ones’ were in his mind to the end.

He died on Easter Sunday, 3 April 1994. Many, including the Pope, saw a ‘sign’ in that this great apostle of life departed on the great feastday of the Lord of life. Notre Dame de Paris was packed for the funeral Mass. The officiating bishop read John Paul’s message in which the Pope thanked God for ‘Brother Jerome’, praised him for all he had done for human life and dignity, called him an ostracised ‘sign of contradiction’ in a permissive society and warned of the organised culture of death that menaced the unborn, the aged and the sick.

But the speaker who impressed most was the trisomic Bruno who had been one of the children involved in the famous discovery 35 years previously. He spoke of Lejeune from the heart and spoke to him as to a friend still present: “Thank you, Professor Lejeune, for all that you have done for my father and my mother. Thanks to you, I am proud to be me. Your death has healed me.” It was a testimony that Jerome Lejeune had lived up to what could be called his ‘mission statement’.

“Only one phrase will dictate how we behave: the argument that does not deceive and that from elsewhere judges all; the very word of Jesus: what you have done to the least of mine, you have done to me.”

Lejeune: the young one: so well-named
Called to protect the very young
Newly-arrived, on the lowest rung
Of the ladder of life and under threat
because they’re ill – but don’t forget
they are of us. So he proclaimed
in science and faith, in deed and word:
‘a human’s here, a tiny ‘who’
a miracle completely new
a wonder-gift, an infant given
meant like all of us for heaven
a little one loved by the Lord’.

Easter Day, all labour done
Rendezvous with Mary’s Son
Once a very little One
Now the Lord of life, says ‘Come’.



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