A uniquely eloquent advocate for the sanctity of the human person in our lifetime was the pediatrician and geneticist Dr. Jerome Lejeune (1926-1994). We can’t do full justice here to his story, which is best told in the tender memoir, Life is a Blessing, by his daughter Clara Lejeune-Gaymard. In it, Lejeune-Gaymard recounts her father’s ground-breaking medical discoveries, which were driven by his profound respect for the specialness and sanctity of every human life — however young, sick, or vulnerable.
Lejeune’s most important breakthrough was to uncover the genetic basis for Down Syndrome in the presence of an extra chromosome in the DNA of a child born with that condition. This discovery by itself helped transform the lives of patients and their families, who had for decades lived under a false moral stigma — since it was widely believed that Down Syndrome in a child was the side-effect of syphilis in the mother, which was associated in the popular mind with prostitution. By offering rock-solid proof of a biological cause for Down Syndrome, Lejeune helped the parents of such children move in from out of the shadows. Lejeune went on to uncover the genetic basis for another devastating birth defect, Cri-du-Chat Syndrome, and made advances in understanding the causes of Fragile-X Syndrome. He also anticipated the rest of medical science by decades in his insistence on the importance of folic acid in reducing the risk of many birth defects.
Lejeune’s discoveries won him early academic acclaim. In 1962, he was honored by President John F. Kennedy with the first Kennedy Prize. Lejeune was appointed the first Professor of Fundamental Genetics at the Faculty of Medicine of Paris in 1964, and in 1969 he received the most prestigious honor in his field from the American Society of Human Genetics, the William Allen Award.
Unlike many scientists of his era, Lejeune saw his work as deeply rooted in his relationship with patients and their families. He referred to his Down Syndrome clients as “my little ones,” and worked with their families to help them find educational and work opportunities — consistently taking time away from his research (and turning down opportunities to vastly increase his income) to see patients at his low-cost private clinic. Lejeune’s ongoing research for the next 30 years was devoted to understanding the causes of genetic disorders and searching for means to treat these conditions in utero, as well as ways to mitigate the effects of the disorder in children and adults — to gain for each patient the best and richest life possible. Lejeune took with religious seriousness the medical vocation and the ethic that has undergirded it since Hippocrates: to do no harm, to serve the cause of life, and put the interests of the individual patient first. (Indeed, in the traditional Hippocratic Oath, new physicians specifically promised not to take part in abortions; in 1964, Dr. Louis Lasagna of Tufts University School of Medicine composed a watered-down version that specifically allowed for abortion—a rewrite that is used at most secular medical schools today.)
Lejeune watched with an almost uncomprehending horror in the 1960s and 70s as the majority of his colleagues rejected key elements of this heritage, and embraced a utilitarian hedonist creed that accepted abortion, and allowed Lejeune’s “little ones” to be seen not as patients deserving treatment, but as problems that should be prevented.
In a bitter irony, the research Lejeune pioneered also led to the development of prenatal screening tests, now used by doctors to detect Down Syndrome in unborn babies, most of whom are routinely aborted. Lejeune denounced this abuse of science as “chromosomal racism.” The first laws in France permitting abortion were written specifically to target “defective” fetuses, and Lejeune burned most of his professional and academic bridges when he became one of the few prominent scientists in France to lobby against these laws. In 1981, Lejeune would testify before a U.S. Senate judiciary subcommittee on the “question” of when human life begins. After recounting the overwhelming biological evidence that the answer is simply, conception, Lejeune
revealed a little of the personal tenderness and wonder the unborn life evinced in him:
“Thanks to a refined sonar-like imagery, Dr. Ian Donald, from England, a year ago succeeded in producing a movie featuring the youngest star in the world, an 11-week-old baby dancing in utero (in the uterus). The baby plays, so to speak, on a trampoline! He bends his knees, pushes on the wall, soars up and falls down again. Because his body has the same buoyancy as the amniotic fluid, he does not feel gravity and performs his dance in a very slow, graceful, and elegant way, impossible in any other place on the Earth. Only astronauts in their gravity-free state can achieve such gentleness of motion. (By the way, for the first walk in space, technologists had to decide where to attach the tubes carrying the fluids. They finally chose the belt buckle of the suit, reinventing the umbilical cord.) “When I had the honor of testifying previously before the Senate, I took the liberty of referring to the universal fairy-tale of the man smaller than the thumb. At two months of age, the human being is less than one thumb’s length from the head to the rump. He would fit at ease in a nutshell, but everything is there: hands, feet, head, organs, brain, all are in place. His heart has been beating for a month already. Looking closely, you would see the palm creases and a fortune teller would read the good adventure of that tiny person. With a good magnifier the fingerprints could be detected. Every document is available for a national identity card.
“With the extreme sophistication of our technology, we have invaded his privacy. Special hydrophones reveal the most primitive music: a deep, profound, reassuring hammering at some 60-70 per minute (the maternal heart) and a rapid, high-pitched cadence at some 150-170 (the heart of the fetus). These, mixed, mimic those of the countrabass and of the maracas, which are the basic rhythms of any pop music.
“We now know what he feels, we have listened to what he hears, smelled what he tastes and we have really seen him dancing full of grace and youth. Science has turned the fairy tale of Tom Thumb into a true story, the one each of us has lived in the womb of his mother.”
Lejeune would return to the United States to testify in the “frozen embryo” case Davis v. Davis, that every embryo should be treated as a patient, not a commodity. He correctly foresaw the outcome of designating tiny human beings as property, not people. That is the fate of the hundreds of thousands of frozen embryos now languishing in a technological limbo across the world, which scientists are hungrily seeking out for use in stem cell research. These infinitesimal human beings will either sit in freezers indefinitely, or be cannibalized for parts.
As his daughter documents, Lejeune’s activism led directly to his loss of research money, to the end of his academic advancement, and to a professional isolation that would prevail until the end of his life. As she wrote of her father’s fate:
Lejeune-Gaymard recounts that even she found herself shunned at university because of her father’s activism, as if the guilt from “crimes” against public opinion had been transmitted genetically to his daughter.
What recognition Lejeune still received began to come from those who shared his concern for the sanctity of life. In 1981 he met with Pope John Paul II — as it turned out, just a few hours before the attempt on that pontiff’s life — and he joined the Pontifical Academy for Science. In 1994, Pope John Paul II would name Lejeune head of the newly established Pontifical Academy for Life. Lejeune would not be able to accomplish much in that position, as he was already dying of cancer. After a long and agonizing illness, Lejeune died on Easter Sunday, 1994. One of his last requests, his daughter reports, was that spaces be saved at his funeral for his “little ones” — the Down’s Syndrome patients whom he loved so truly, to the end.
Doctor Lejeune’s cause for canonization is underway; he has been named a “servant of God.” Perhaps we should best remember him as a true friend of man.
Jason Jonesis a producer in Hollywood. His films include Bella, Eyes to See, and Crescendo. Learn more about his human rights initiatives at www.iamwholelife.com.
John Zmirak is the author of The Bad Catholic’s Guide to the Catechism. His columns are archived at The Bad Catholics Bingo Hall. This column is adapted from Jones’ and Zmirak’s upcoming book, The Race to Save Our Century (Crossroad, 2014).
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