"My son with Down syndrome and leukemia transforms hearts."CilouThe joy of Down syndrome leads us to be authentic in front of them".Growing devotion to Lejeune, discoverer of Down syndromeThe French physician Jérôme Lejeune, considered the father of modern genetics, is Venerable in the Catholic Church. The liturgical norms do not permit the worship of servants of God declared Venerable, but from the moment of the declaration, suffrages for his soul must cease, since the Holy See has judged that he lived the Christian virtues to a heroic degree.
January 21, in the year 21 of the 21st century (three times 21), - a date that some see as particularly significant, because Lejeune was the discoverer of trisomy 21, the cause of the Down syndrome-Pope Francis accepted the promulgation of the decree that recognizes the heroic nature of the virtues of Jerome Lejeune.
Before that, the positive vote of the Commission of Theologians, and later that of the bishops and cardinals of the Congregation for the Causes of Saints, presided over by Cardinal Marcello Semeraro since October of last year, had taken place. For his beatification, all that is missing is a miracle, that is, an event that cannot be explained by natural causes and which is attributed to his intercession. Most of them are of a medical nature, and in any case must be physical, according to the norms of the Church.
– Supernatural Association of Friends of LejeuneThe Archbishop of Paris, the promoter of a process that was initiated on June 28, 2007 by the then Archbishop of Paris, Cardinal Vingt-Trois, expressed her joy for this "decisive step towards the beatification" of Lejeune. He added that it is also "an immense joy for all those in the world who follow his luminous example, dedicating themselves to the service of the sick and of life, with unconditional love, and also for those who are passionate about the truth.
Jean Marie Le Mené, president of the Foundation that bears the name of the French geneticist, said that "this decision is a great encouragement to continue the work of Professor Jérôme Lejeune in the service of life. The quality of a civilization is measured by the rest it has for its weakest members".
The Foundation recalls, in a note made public in recent weeks, that the announcement comes in an alarming context for respect for life in France, since the bioethics law still under discussion in Parliament increasingly objectifies and dehumanizes the embryo, which is the youngest member of the human species".
Indeed, "the struggle for respect for the embryo was permanent throughout his life in Jérôme Lejeune" ̶ recalls the note ̶ , a person who was "historical opponent of the Veil Law that legalized abortion in France in 1975, and who had seen the first bioethics law in 1994, just before his death, as a researcher and physician, which would lead to in vitro fertilization and embryo research."
In tune with St. John Paul II
The French geneticist was the first president of the Pontifical Academy for Life, appointed by St. John Paul II, and the Foundation emphasizes that the Catholic Church thus recognizes "an exceptional man of science, who placed his intelligence, his talent and his faith at the service of the dignity of people injured by a mental disability, including children with trisomy 21".
Pablo Siegrist Ridruejo, director of the Jérôme Lejeune Foundation in Spain, where there has been a permanent delegation since 2015, is one of the most authoritative voices to speak about the French physician and researcher. "Lejeune is the promoter of the Pontifical Academy for Life from his friendship with John Paul II. St. John Paul II accelerated the creation of the Academy when he learned of Lejeune's cancer, which lasted three months, and named him the first life president of the Academy. The study of bioethics is something absolutely central, nuclear, and Lejeune promoted it very actively in his talks and conferences, and he actually lived it".
"I think Lejeune is one of the people Pope John Paul II had in mind when he spoke of the martyrs of the 20th century. And there is a lot of harmony in the lives of the two. They were very close friends," he adds. "For example, on the day of the Ali Agca attack in 1981, the Pope was coming from lunch with Lejeune and his wife. Lejeune went to the airport, he was not in St. Peter's Square, and when he arrived in Paris, and learned of the attack, he had a nephritic colic; he was very ill, and then he recovered. There are many moments in which a great harmony between these two saints can be appreciated", commented Pablo Siegrist.
Pioneer of modern genetics
Siegrist defines himself as "a Lejeune enthusiast," so there's no need to pull his tongue out too much. "Here there is a Chair of Bioethics, whose director is Mónica López Barahona, and I direct the Foundation, which has three branches, fundamentally: medical care, research and the whole part of the defense of life," he explains. But "to understand the Foundation in depth, you have to know Lejeune, because the Foundation's only aim is to continue Lejeune's work.
In his opinion, "there is no doubt that Lejeune is the father of modern genetics, genetics that has consequences in concrete life. Jérôme Lejeune was the first to discover this and to find a path for research and eventual treatment of various pathologies. Because the first chromosomal anomaly to be detected is the trisomy of the 21st pair, in 1958. Lejeune went on to describe other genetic syndromes, and spent his whole life working on them.
Most valuable: his view of the person
"Now, if we go deeper, to what he represents for humanity, beyond this, which is very useful and very valuable, what is truly valuable about Lejeune is his view of the person."
In other words, Lejeune's discovery comes in a context, explains Siegrist, in which people with Down syndrome who had an average life expectancy of 10-12 years, "were thought to be the result of illicit sexual relations. There was a kind of urban legend that Down syndrome came from syphilis. Mothers who had children with Down syndrome were looked upon with suspicion. They were called mongoloids, or subnormal here in Spain. There was a whole look about them as the village idiot".
"And yet," he continues, "what is constantly emphasized in the testimonies of the families who treated him is, almost verbatim: 'he made me see my son Fulanito, not a syndrome'. It could be said that Lejeune rehabilitated people with Down syndrome, trisomics, according to numerous testimonies of that time (he discovered trisomy in 58)".
So much so that Lejeune "renames Down syndrome, although this has not caught on in other languages, but in France, to refer to a person with Down syndrome, one speaks of a trisomic person. He says: this person is not a syndrome; this person has a trisomy on chromosome 21.
It gives back their humanity to trisomics, to embryos....
Basically, it could be said that Jérôme Lejeune "He gives back their humanity and dignity to these people, and there he comforts and transforms the look of the parents and the environment of these people. For me, this is the core of Lejeune, to have such a clear understanding of what his patients are: there are photos that are precious, in which Lejeune can be seen engaging in a dialogue of glances with the patient, which is impressive to see".
Precisely because he has this clear understanding that "his patient is a person, a subject worthy of the highest recognition and a subject of rights, that is why he gives up his life to defend the embryo with Down syndrome," Siegrist points out. "Because his approach is: here, before anything else, there is a person, who deserves all the respect.
That leads him to lose all his greatness and human recognition. "There are testimonies on record in which it is stated that he was not given the Nobel Prize so as not to give him too much political power. What he has is such a deep conviction that he is in front of a son of God, that in the end everything else is muted. It is true that he does not express it in these terms, although in some conferences he does, when he speaks to a Catholic audience. But otherwise, he always speaks from the point of view of science. There is an overwhelming vital coherence. This is the key to understanding Lejeune".
He did not remain on the sidelines of the public debate
Madame Birthe Lejeune, Jérôme's wife, lived through all the ups and downs of her husband's life, and before she passed away last May at the age of 92, she recalled anecdotes of his life, also during a visit to Spain.
"Madame Lejeune told me about the precise moment when he becomes aware that he cannot stay out of the public debate," Pablo Siegrist recounts. "Because he was a geneticist, and he defines himself as a physician. His aspiration in life was to be a village doctor, and this is stated in a letter to his wife when they were engaged: I simply offer you the simple life of a village doctor. Then he went to do an internship at the Enfants Malades hospital in Paris, with a doctor, Professor Turpin, who was already working on the subject of those who were called mongoloids, and he let himself be carried away by that".
Deeply optimistic
Lejeune discovered the so-called trisomy 21 in 58, and published it in January 59. He received numerous recognitions in the 1960s, but he saw that medical societies were beginning to promote eugenic abortion. Amniocentesis could already be performed, with which the chromosomal anomaly could be detected in the uterus, and an abortion could be considered in cases of Down syndrome, Siegrist explains.
"In fact, in the first bill on abortion, on the decriminalization of abortion in France, in '69, the only case that is contemplated is eugenic abortion, the only chromosomal anomaly that can be detected is Down syndrome". He was very excited, because he thought that as soon as the cause was discovered, we were on the way to finding the solution. And he was deeply optimistic. He was convinced that we would find a solution to the drama of intellectual disability. At that time, during the processing of the bill, there began to be public televised debates, it was May '68..."
A television debate, "you have to defend me".
"And there was a debate on television in which a very aggressive feminist began to say that these beings are monsters, and that they must be eradicated from society. The next day, he is in consultation and a boy of about twelve years old arrives with his parents, very excited and nervous after having seen the debate, and tells him: doctor, doctor, you are my doctor, they want to kill me, you have to defend me".
Lejeune spent the morning ruminating on the child's request, and when he came home to have lunch with his wife, he told her: "look what has happened to me, I am going to have to step forward in the defense of my patients". That same afternoon he gathered the team in the laboratory, because he was not stopping his research, and he told them that he could not allow this, because they were attacking his patients (he sees the embryo with Down's syndrome as his patient), and he was going to take a gamble, and whoever wanted to, should leave.
Siegrist tells it as if she were hearing it from Mrs. Lejeune. "Her husband is going to put everything on the line, and he is aware of what is coming, already in '69. And indeed it came. What came was extermination. There are no cases in many areas of births of children with Down syndrome. They are rare to see.
He is right. "Down España told us last year that it estimated that eugenic abortion was occurring in more than 96 percent of the cases in which Down syndrome was diagnosed," he reveals. "The dramatic thing is that we have spread a social mentality and a culture, as Pope Francis said, of total discarding. We do not accept that others allow these people to be born, which is the last straw".
In a recent conference, Professor Agustín Huete (Salamanca) and doctoral student Mónica Otaola pointed out that "nowhere in the world has there been such a large drop in the birth rate of people with Down syndrome as in Spain", although data are difficult to find and sometimes incomplete (see sindromedown.net).
It mobilizes...
We return to Lejeune. If you have been able to see some videos, he does not lose his temper, he is very affable, he always recognizes first of all the person in front of him, even if they were really adversaries on the level of ideas... They carry out a campaign in which he ends up being the leader without wanting it, because he did not want to be an activist, he was a doctor, but he gathers thousands of doctors collecting signatures in France, politicians, jurists. In fact, his campaign knocks down the first abortion bill in France. And if De Gaulle had not died and if there had not been Simone Veil's law, perhaps another cock would have sung".
... but you are boycotted
There is a time when he is no longer invited to debates on television. Because they know he is too good. And they remove him from the spotlight. From then on, a direct battle against him began. "In those years, Marxist and feminist groups began to dynamite conferences. There was a conference on the embryo, I am speaking from memory, and Lejeune explained that the embryo, from the genetic point of view, is a new human being, with a differentiated genetic patrimony, and an autonomous life program from the moment the fertilization process ends. And in that conference, two or three people, located in different parts of the room, start shouting, they throw a liver at him as if he were a fetus, and then he, very calmly, says: "Gentlemen, those who want to follow the conference, let's go outside, they all leave and three or four people stay inside".
Nobel Prize at stake
Pablo Siegrist assures that Lejenue was aware that the Nobel Prize in Medicine was at stake. "He was very temperate, he was not looking for confrontations. But he is clear that what he has to defend, he will defend to the end," he explains. "And if the Nobel Prize is at stake, he'll play for it."
In August 1969, the American Society of Genetics awarded Lejeune the William Allen Memorial Award, and he gave a lecture in which he stated that the chromosomal message indicates membership of the human species, and is present and complete from its first cells; an embryo is a human being to be protected. Since his arrival in San Francisco, he perceives that the possibility of giving a free hand to the abortion of embryos with Down syndrome is being considered. In his speech, he defends the dignity and beauty of the life of these people, and calls for the responsibility of doctors and scientists. In a letter to his wife, from the plane, he tells her: today I have lost the Nobel Prize".
Medical professionals: defending the most vulnerable
The conversation with Pablo Siegrist is drawing to a close. Many questions remain unanswered, but we address only one: What can health professionals learn from Lejeune's testimony?
"In fact, on the medical level, the patient as a person has many implications, not only related to the origin of life. The patient as a person worthy of all respect when he sits down with me and I have only 5 minutes on the agenda because then I have the next patient."
This, of course, has consequences. Siegrist unpacks some of them. "That should lead to the utmost honesty and consistency. And this is a subjective thought of mine," he clarifies. "We see today how abortion has spread so dramatically in all Western societies. Doctors, at a given moment, have closed their eyes. Doctors know perfectly well if a fetus is a human being, they know about fetal suffering. A doctor, when he performs an abortion, knows in his inner self that he is liquidating a life. There is a moment when he has closed his eyes and said to himself: I am not going to think about it. That is why he continues.
No room for euthanasia
"So, at that moment, the Hippocratic oath, which was what moved Lejeune, breaks down. He argued from there, not from faith. He did not need faith as a means of knowledge. He kept to that scientific plane," says Pablo Siegrist.
Following the line of argument, I would say: "If I know that my patient is a human being, I cannot provide him with death, because I am here to help him to live well, not to die. Therefore, euthanasia is not possible. If I know that my patient is a human being, I don't care if he has an intellectual disability or not, I am going to give him all the time he needs.
And I will not think: as he has an intellectual disability, he will not complain; as he has autism, he will not complain. I don't care if he suffers, I am not going to apply techniques to alleviate his suffering... Or because he has cerebral palsy, I treat him brutally. Or I don't speak in a certain way in front of a patient who is in a coma...".
In short, "it is a coherence of medical practice, and of the practice of life, which Lejeune had perfectly integrated into his life, and which unfortunately in many cases society is encouraging many physicians to lose. This is when the practice of medicine is dehumanized".
