Friday 25 February 2011

Jerome Lejeune, Paediatrician and Professor of Genetics {1926-1994}: Hate the disease and Love the diseased.





Jerome Lejeune was born in France in 1926. Captivated at the age of 13 by Dr. Benassis, the hero of Balzac's novel 'The Country Doctor', he too wanted to become a country doctor, dedicated to the care of the lowly and the poor. After the war (1945), he threw himself passionately into the study of medicine. On June 15, 1951, he successfully defended his doctoral thesis. That same day, his future was decided in a direction completely different from what he had planned. One of his teachers, Professor Raymond Turpin, suggested they collaborate on a major work on "mongolism," a condition that affects one out of every six hundred and fifty children. Jerome accepted, and his path was set. On May 1, 1952, he married Birthe Bringsted, with whom he would have five children. Family life was his priority, especially during vacations. During his stays abroad, he wrote to his wife daily.

         Lejeune had made his career specializing in the treatment of children with Down syndrome, and attended a Copenhagen meeting of scientists where Albert Levan's discovery of the number of human chromosomes was discussed. Afterwards, it occurred to him to check the number of chromosomes in his Down syndrome patients. After taking a skin biopsy from one of his patients, Lejeune, using borrowed equipment discovered that children with Down syndrome have an extra copy of chromosome 21. This was the cause of “mongolism” a condition that would from then on be called “Trisomy 21.”  The Academie de Medicine was informed of the discovery in March 1959. He also discovered the link between inadequate intake of folic acid by pregnant women and neural tube defects. In November 1962, Jerome was awarded the Kennedy Prize. He diagnosed the first case of Cri du chat syndrome, in 1963. In October 1965, he became a professor of Fundamental Genetics at the University of Paris. He practiced his profession at the Hôpital des Enfants Malades (Sick Children's Hospital) in Paris. Dr Lejeune was a member of the American Academy of the Arts and Science, a member of the Royal Society of Medicine in London, The Royal Society of Science in Stockholm, the Science Academy in Italy and Argentina, The Pontifical Academy of Science and The Academy of Medicine in France. He spent the remainder of his life researching a cure for Down syndrome. He said, "It would take less effort to find a cure for Down syndrome than to send a man to the moon."

            Everything looked hopeful: his discovery and the publicity it received in the scientific world, he thought, would encourage research; and appropriate treatments would be developed to cure the afflicted and give hope to their parents. He treated thousands of young patients, who came to him from all over the world, or with whom he corresponded. He helped the parents to understand and accept these Down syndrome children. He assured them that their children, despite a serious mental handicap, would overflow with love and affection. 

Chromosomal racism
          But Jerome noticed, especially in the American medical establishment, a tendency to recommend abortion to prevent affected babies from being born. He saw with horror the risks his discovery had brought for those with Down syndrome, much like Albert Einstein or Alfred Nobel. To fight this form of racism, he had recourse to experimental reality as a critical weapon. It demonstrated, in effect, to impartial minds, that one could not view as strangers to the human race those who, biologically, belong to the same species: the embryo is a person.

"I've lost my 'Nobel'"
           In August 1969, the American Society of Human Genetics granted Lejeune the William Allen Memorial Award, the highest distinction that can be granted to a geneticist. On his arrival in San Francisco, where he was to receive the award, he clearly saw that the abortion of Down syndrome children was expected to be authorized. The pretext was that it was cruel and inhuman to allow these poor creatures to come into the world, doomed to an inferior life, and posing an unbearable burden on their families. He trembled. “By my discovery,” he said to himself, “I’ve made this shameful calculation possible!” After receiving the prize, he was to give a talk to his colleagues. Would he have the courage to speak the truth? He would speak! The physical nature of man, he explained, is completely contained in the chromosomal message, from the first moment of conception. This message makes the new being a person, not a monkey, not a bear; a man whose complete physical potentiality is already contained in the information given to his first cells. Nothing more will be added to these potentialities, which will serve his intellectual and spiritual life, everything is there. He concluded plainly: the temptation to kill by abortion these small people afflicted with disease is contrary to moral law; and genetics confirms this conclusion. This moral law is not arbitrary.

               Not a single clap; but hostile or annoyed silence from these men, the elite of his profession. Jerome had collided head-on with them. He wrote his wife: "Today, I lost my Nobel Prize in medicine”; but he was at peace. He confided in his private diary: "Chromosomal racism is brandished like a flag of freedom. ... That this negation of medicine, of all the biological brotherhood that links mankind, is the sole practical application of the knowledge of Trisomy 21 more than breaks my heart ... Protecting the abandoned-what a reactionary, retrograde, fundamentalist, inhuman idea!"

Media battle
          With the medical world coming up short, could the political world be convinced? In June 1970, a member of the French Parliament drafted a bill that would allow the prenatal detection and abortion of children with Down syndrome. When parliament went back into session, the media set the debate in motion. Jerome was invited to be the guest on a biweekly television current events show with a large viewership. His appearance generated a huge volume of mail, including deeply moving letters from people who had been severely handicapped from birth, testifying that their life had not been the nightmare that others claimed, as well as letters from parents of children with Down Syndrome, who spoke of their son's or daughter's panic at realizing that some thought that people like them should be killed. In reality, the campaign to allow the killing of children with Down syndrome was a way of introducing the right to abortion. People worked to discredit Lejeune.
            During a trip to Virginia in October 1972, he was shown a protocol to be used during physiological or biochemical experiments on five-month-old fetuses "removed" by Caesarean section for this purpose. He wrote to his wife: “The text says to treat them like any tissue or organ sample, but specifies that one must kill them after a short period of time... I simply said that no text could regulate crime.” How had his very qualified colleagues come to this? They had been molded, under the pretext of scientific rigor, to a point of view in which God had no place. For them, the fetus is no longer a person, a creature of God destined to see Him and love Him for all eternity. It can then become the target of any attack, as long as a majority agrees.
            On June 7, a bill decriminalizing abortion was filed in the French National Assembly. Jerome noted that false statistics and extreme cases, which he too was very sensitive to, were being used to get abortion legalized. Alleged surveys claimed that half of the medical profession was in favor; but, at the same time, thanks to the initiative of Mrs. Lejeune, the signatures of more than 18,000 French doctors (a majority of the medical profession) were collected and published, stating their opposition to abortion, thus showing the fraudulence of the media campaign. Soon the doctors were joined by nurses, then judges, law professors, lawyers, and more than 18,000 mayors and local elected officials. The bill was derailed.

In spite of the derision
           In spite of scorn, Jerome wanted to lend support to those who, wherever in the world, suffered persecution for their respect for life. In August 1989, the King of Belgium, Baudouin I, in a difficult situation with respect to his parliament, which was about to legalize abortion, asked for Jerome's counsel. The King would eventually take an exemplary stance; he would renounce his throne rather than support the legalization of abortion.
In 1991, Jerome embarked on "reflections on professional ethics in medicine,” in seven points. He wrote:                                                                                                                                                                        

1. 'Christians, be not afraid!' It is you who possess the truth; not that you invented it, but you are the vehicle for it. To all doctors you must repeat: you must conquer the illness, not attack the patient.                                                                                
2. Man is made in the image of God. For this reason alone he must be respected....                                                                                                                                     
3. “Abortion and infanticide are unspeakable crimes"                                                                                            
4. Objective morality exists; it is clear, and it is universal.                                                                            
5. The child is not disposable and marriage is indissoluble.                                                                                   
6. You shall honor your father and mother: Uniparental reproduction by means of cloning or homosexuality is not possible.                                                                                                                                
7. The human genome, the genetic capital of our race, is not disposable.                                                    
     In so-called pluralistic societies, they shove it down our throats: `You Christians don't have the right to impose your morality on others!' Well! I tell you, not only do you have the right to try to incorporate your morality in the law, but it's your democratic duty!" 


Dying in action
            In 1993 he received the Griffuel prize for his pioneering work on chromosomal anomalies in cancer. In the first week of November of that year, he was examined by his friend Professor Lucien Israel who, with a drawn face, showed him the x-rays of his lungs: they indicated an already advanced cancer. Jerome accepted the situation with courage. He had to break the news to Birthe and his children: "You shouldn't worry until Easter- I will live at least till then”; suddenly, he added, “And at Easter, only wonderful things can happen!” The chemotherapy sessions started at the beginning of December-they were very taxing, as he expected them to be. Nevertheless, he continued to receive phone calls, to comfort the families of patients.
           March 30, 1994, as he lay in a delirium, in the grips of a fever of over 40 degrees Celsius, he was placed in hospice care. The next day, at dawn, he regained consciousness. He told his children who were asking him what he wished to bequeath to his little patients: “I don't have much, you know... So, I have given them my life. And my life is all that I had.” Then, moved to tears, he murmured, "O my God! I was supposed to have cured them, and I am leaving without having found ... What will happen to them? “Then, radiant with joy, he spoke to his loved ones: "My children, if I can leave you a message, this is the most important of all: we are in the hands of God. I have experienced this a number of times.” The next day, passed quietly: Jerome was calm. However, at the end of the afternoon, his respiratory problems returned, worse than before. Suddenly authoritative, he ordered his wife and other loved ones to go home. He did not want them present at his agony. Sunday morning(April 3rd - Easter day), around seven o'clock, he said with difficulty to a colleague he barely knew, who had been holding his hand for much of the night: “You see... I've done well...” and he breathed his last. He was 67 years. His daughter Clara Lejeune-Gaymard one time President of General-Electric (France) wrote biographical memoirs of her father, in the book, “Life is a Blessing.”


Sources:
1. Wikipedia, the free encyclopedia.
2. The National Association of Catholic Families, UK. (http://www.catholic-family.org.uk).
3. Obituary: Professor Jerome Lejeune. The Independent (London), Apr 12, 1994 by Maj Hulten.
4. Informations sur la maladie de la trisomie 21. (www.fondationlejeune.org).
5. When Science Speaks About Human Life. Report at “Man, Religion and Culture” conference, Tallinn, May 29, 1993, by Professor Jérôme Lejeune.