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His life and commitment
As a young doctor, Jérôme Lejeune was very soon confronted with the distress of young mentally handicapped children – who were segregated – and their families – who were treated with suspicion.
Because society would not show the fellowship which is due to every human being, and because the medical profession was unable to avert the misfortune which befell these children, he decided to devote his life to them.
He thus became a research scientist, through absolute necessity.
In order to attempt to penetrate the mystery of these wounded minds, which prevent the children from being fully themselves, and to try to relieve the resulting suffering.
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The discovery of Trisomy 21
In 1958, at the age of 32, Jérôme Lejeune discovered the first chromosomic anomaly in man : Trisomy 21.
Until then known as "Down's syndrome", it was incorrectly considered to be a racial degeneration, whereas in fact it is due to the triple presence of chromosome 21.
For the first time in the world, a link was established between a state of mental debility and a chromosomic aberration.
Parents of trisomic children then learned that their handicap was an accident, which from that time onwards became known as Trisomy 21.
Subsequently, with his collaborators, the professor discovered the mechanism of a host of other chromosomic disorders, thus opening the way for cytogenetics and modern genetics.
As Head of the Cytogenetics unit at the Hôpital Necker Enfants Malades hospital in Paris, his surgery became one of the largest in the world. He and his team studied more than 30,000 chromosomic cases, and treated more than 9,000 patients suffering from intelligence genetic diseases.
He had the firm conviction that any advance towards a cure for one of these diseases would hold the key to curing the others.
His main concern, before all else, was to find a way one day to cure these young sufferers who came to see him from all over the world. To his great despair, however, it became "fashionable" to destroy the patients which could not be cured.
Whereas the results of his research should have led to the advance of medical knowledge on the road to finding a cure, instead, they were used for the earliest detection of children suffering from such disorders, and in most cases to destroy them.
He then took the decision to defend his patients publicly. This commitment on behalf of the most rejected among us, led to his being ostracised by those in high places, but loved by the humble and their likes.
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Biographical milestones
Jérôme Lejeune was born in 1926 in Montrouge, a Parisian suburb.
He studied medicine and became a research scientist with the CNRS (French National Scientific Research Organisation) in 1952.
He became the French international expert on nuclear radiation.
In July 1958, whilst examining the chromosomes of a child suffering from "Down's syndrome", he discovered the existence of a chromosome too many on the 21st pair. For the first time in the world, a link was established between mental debility and a chromosomic aberration.
In 1964, he became the first professor of Fundamental Genetics at the Paris Medical Faculty.
Whilst keeping himself readily available for the families of handicapped children who he treated, he took an active part in thousands of conferences world-wide.
In 1974, he became a member of the Pontifical Science Academy.
In 1981, he was elected as a member of the Academy of Moral and Political Sciences.
In 1983, he joined the National Medical Academy. He was made an honorary doctor, was granted membership or received awards from many other foreign academies, universities and learned societies.
In 1994, he was appointed President for life of the Pontifical Academy.
He died on 3rd April 1994, with the sad feeling of failing in his mission : "I was the doctor who was supposed to cure them and as I leave, I feel I am abandoning them."
Professor Lejeune received numerous awards for his work on chromosomic pathologies, among which :
in 1962, the prestigious Kennedy prize
in 1969, the William Allen Memorial Award
in 1993, the Griffuel prize, for his pioneering work on chromosomic anomalies in cancer.
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Quotations
His work led him to think about the important questions of human life, on the role of medicine or of research, and to actively defend the meek.
Here are a few quotations, taken from interviews, lectures, conferences, his diary, etc.
You will find Professor Lejeune's thoughts in : Symphonie de la Vie
An urgent mission
"When parents are worried about their sick child, we have no right to keep them waiting, even for a single night, if it can possibly be avoided."
- « Compassion towards parents is a feeling which every doctor must have. If a doctor does not feel this, he becomes no more than a kind of computer, a machine for writing prescriptions. Anyone who can announce to parents that their child is seriously affected, without feeling heartbroken at the mere thought of the pain about to engulf them, such a person is not worthy to belong to our profession. »
The genetic message
- « Human genetics can be reduced to the following elementary creed : In the beginning there is a message, and that message is in life, and the message is life. And if that message is a human message, then that life is a human life. »
- « Life has a very long history, but each one of us has a very precise beginning, and that is the moment of conception. »
- « Life begins at the instant that all the required and sufficient information is combined in order to define the new being. It therefore begins exactly at the instant that all the information brought by the spermatozoon is combined with the information contained in the ovum. As soon as the spermatozoon penetrates, the new entity begins its existence. Not as a theoretical human, but already an entity who we shall later call Peter, Paul or Mary. »
- « If man does not begin at impregnation, then man never begins, otherwise, where would the new information come from ? The test-tube baby is a demonstration of this for any disbelievers. »
- « Acceptance of the fact that after impregnation, a new human being has reached existence, is no longer a question of fashion or of opinion. »
The story of Tom Thumb
- « At the true age of one month, (…) a human being is four and a half millimetres long. Its tiny heart has already been beating for a week, its arms, legs, head, brain are already recognisable. At (…) two months old, (…) from head to the tip of its bottom, the human embryo is about three centimetres long. It could fit curled up inside a walnut shell. Inside a clenched fist, it would be invisible, and the clenched fist would crush it accidentally without even noticing. But open your hand, the embryo is almost complete, hands, feet, head, organs, brain, everything is in its place and from now on will merely grow. Look more closely , you can already read the life lines in its palms and predict its good fortunes. Look closer still, with an ordinary microscope, and you can see its fingerprints. Everything is already there and it would be possible to issue its identity card. »
- « The incredible Tom Thumb, the man no bigger than my thumb, actually exists ; not the one in the fairy tale, but the one which every one of us once was. »
- « But what about the brain, they say, it is only complete at five or six months. But no, in fact it is only entirely in place at birth : its countless connections are only fully established at six or seven years, and its chemical and electrical mechanisms is only fully run-in at fourteen or fifteen ! »
- « Gradually, we reach the end of the embryo period, two months after impregnation. At that stage, the little one is as big as my thumb. And this is why all mothers tell fairy tales to their children, tell them about Tom Thumb, because it is a true story. Each one of us was a Tom Thumb in our mother's womb, and women have always known that there is a sort of underground country, a sort of vaulted shelter with a reddish glow and a rhythmic sound in which tiny humans live a strange and marvellous life. This is the true story of Tom Thumb. »
Human brotherhood
- « The offspring of man is in fact a miniature man. »
- « What was the colour of Adam's skin ? He was man-coloured. »
- « With their slightly slanting eyes, their little nose in a round face and their unfinished features, trisomic children are more child-like than other children. All children have short hands and short fingers ; theirs are shorter. Their entire anatomy is more rounded, without any asperities or stiffness. Their ligaments, their muscles, are so supple that it adds a tender languor to their way of being. And this sweetness extends to their character : they are communicative and affectionate, they have a special charm which is easier to cherish than to describe. This is not to say that Trisomy 21 is a desirable condition. It is an implacable disease which deprives the child of that most precious gift handed down to us through genetic heredity : the full power of rational thought. This combination of a tragic chromosomic error and a naturally endearing nature, immediately shows what medicine is all about : hatred of disease and love of the diseased. »
- « … After diagnosing Trisomy 21 with a microscope, the decision that the subject must be destroyed because he is trisomic 21, is a form of chromosomic racism. It is to overlook a fundamental fact : which is that on the one hand, one can see three chromosome 21s, but one can also see the other 46, which are entirely normal. It is therefore a member of our species. I should like to make something quite clear : there is no need for a new law. The law already exists, it is more than 2000 years old. It is a Roman law which simply stated that if it is in its interest, « infans conceptus pro nato habetur », which means that whenever its interests are at stake, the conceived child must be considered as born. If we provide the unborn child with the same care as we give to new-borns, all the problems which have been raised are solved. This is real medicine, medicine as it has always been. »
- « We can see the reappearance of the absolute misapprehension of the wish to overcome the disease by destroying the patient ! We would need Molière to ridicule these people arguing seriously around the patient. « Who is this impertinent being who will not cure, who dares to resist our art ? Get rid of him ! » Medicine has become mad when it attacks the patient instead of fighting the disease. We must always be on the patient's side, always. »
- « One can of course imagine a technocratic society, in which the aged and the abnormal would be destroyed, where road casualties would be finished off. Such a society might be economically efficient. But it would be inhuman. It would be utterly perverted by a type of racism as silly and abominable as all others, the racism of the healthy against the sick. »
Curing Trisomy 21
- « We'll find a cure. It is obvious that we'll find a way. The intellectual effort is much simpler than putting a man on the moon. »
- « I could go on for years, discovering the genetic causes of many diseases, ever rarer diseases. But I have the firm conviction, that everything is connected. If I discover how to cure Trisomy 21, then the way will be open to a cure for all the other genetic diseases. The patients are waiting for me, I have to find the answer. »
- « The genetic burden weighing on our species is difficult to measure. Taking just one symptom, the most dramatic, without a doubt, because only man can suffer from it, and at the same time the most inhuman since it prevents the patient from being wholly himself, mental debility affects nearly three percent of the population. I have devoted all my research activity to studying the causes of this great distress. »
« Faced with the hugeness of the task and the enormous need to succeed, our duty can be summed up simply : we shall never give up ! »
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Conferences / articles
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