Down, Not Out
The Legacy of Jerome Lejeune and the Resurgence of Down Syndrome Research
BY LETICIA VELASQUEZ
July 6-12, 2008 Issue | Posted 7/1/08 at 12:12 PM
There’s a battle going on over Down syndrome babies. But these special children also have a patron saint.
Let’s look at the battle first.
As if expectant mothers did not have enough to worry about, the American College of Obstetricians and Gynecologists recently recommended that all pregnant women, regardless of age, be screened for Down syndrome.
The college’s ethics committee announced in April that it is reconsidering its position. But screening for Down puts more babies at risk.
Last May, The New York Times reported that more than 90% of babies are aborted after a diagnosis of Down syndrome. There are efforts to reverse this trend.
In 2005, while still a student at Harvard, Dr. Brian Skotko, a doctor at Children’s Hospital in Boston, released an influential study which exposed the negative attitude of doctors when they inform patients that their baby has Down syndrome.
Prenatally and Postnatally Diagnosed Conditions Awareness Act
Reverberations from Skotko’s study were felt as far as Capitol Hill.
“Sen. [Sam] Brownback’s staffers read about my study in the Wall Street Journal,” said Skotko, “and, as a result, the ‘Prenatally and Postnatally Diagnosed Conditions Awareness Act’ was introduced into the Senate.”
Defeated in 2005, the bill was reintroduced in 2007 by Sens. Brownback, of Kansas, and [Ted] Kennedy, of Massachusetts. It would provide expectant parents up-to-date, scientifically sound information on the medical treatment available to individuals with Down syndrome, access to support groups for parents and a list of potential adoptive parents.
The bill is awaiting debate in the House, after which there is a good chance it will pass and be signed by President Bush.
Dr. Albert Harris, professor of embryology at the University of North Carolina at Chapel Hill, however, is wary of the bill. His comments that babies with Down syndrome should be aborted ignited a firestorm last February.
Harris explained, “I merely intended to spark debate in my class by playing devil’s advocate, and I regret that this misunderstanding inflicted pain upon parents of children with Down syndrome.”
While he has expressed a desire to pursue research into a cure for the genetic disorder, he fears that “the bill could have a negative emotional effect upon women who already have chosen termination.”
Encouraging Research Developments
Promising research at Johns Hopkins Medical School is headed by Dr. Roger Reeves, who said, “I was surprised how successful I was using an agent called SAG [sonic agonist] to help the development of the cerebellum in mice.” He is currently investigating the effects of SAG on the hippocampus; both are parts of the brain that are underdeveloped in Down syndrome.
Reeves cited other breakthroughs: “At The Center for Research and Treatment of Down Syndrome at Stanford, Dr. Craig Garner is using DTZ (pentylenetertrazole) to improve the cognitive function of mice, and Dr. Bill Mobley is working to improve the function of synapses between neurons in circuits important for learning and memory.”
Mobley stated, “I located a single gene on the 21st chromosome, which is a major contributor to mental impairment and the degeneration of neurons in adults with Down syndrome. There is genuine promise in turning great science into great medicine and Down syndrome is no exception. This field is moving in a terrific direction — one that is bringing new hope for people with Down syndrome.”
The Down Syndrome Research and Treatment Foundation funds these programs, which do not use embryonic stem cells.
Recently, the National Institutes of Health drafted a 10-year plan for increasing and coordinating Down syndrome research. Some attribute this modest though encouraging development to the persistence of Down syndrome parent advocacy groups; however, the current federal funding of $17 million is a paltry sum compared to the $128 million allocated to autism research.
These breakthroughs have their medical basis in the work of Dr. Jerome Lejeune, the French geneticist who, in 1958, discovered that Trisomy-21, an extra chromosome on the 21st pair, was responsible for Down syndrome.
Lejeune dedicated his life to finding a cure. As his daughter Clara writes in her memoir, Life Is a Blessing, “he believed it would take less work to cure Down syndrome than to travel to the moon.”
A Catholic, Lejeune’s respect for the sanctity of life continues in the Fondation Lejeune, which operates L’hôpital Saint-Jacques in Paris for patients with Trisomy-21 and funds 100 research grants to scientists around the world who do research in Down syndrome.
Among them are Dr. Colin McGuckin of Newcastle, England, who discovered the stem cells available in umbilical cord blood, and Dr. Alberto Costa of the University of Colorado who is using memantine, an FDA-approved drug used to treat Alzheimer’s disease, to improve the memory of mice with Trisomy-21.
In the United States, The Michael Fund was formed to further the research of Dr. Lejeune.
Obstetrician and geneticist Dr. Paddy Jim Baggot received a grant in 2004 to pursue biochemical studies on the developing fetal brain. He has just published results of his study of the effects of Vitamin B-2 and B-6 on the fetal brain in Fetal Diagnosis and Therapy.
Baggot said, “In the 1970s, when our ability to work with genes was limited, the desire to pursue cures was greater than it is now, when our ability to treat these problems is greater; it is culturally forbidden. There is a pro-abortion mindset which seeks to eliminate those with Down syndrome rather than cure them.”
Baggot called on the medical community “to expand their horizons, and find treatments for Down syndrome,” which he says, “is the more intelligent thing to do, and would change the culture of the medical profession.”
Protector of the ‘Little Ones’
Dr. Marie Peeters Ney, who worked with Lejeune for 10 years, describes the importance of his public witness for the sanctity of life: “In the 1960s, at a time when the whole world was falling apart, when heads in the medical community and society in general were swimming with the idea that ‘we have the power through pre-natal diagnosis to eradicate disease, as well as those who have the disease,’ Dr. Lejeune was the standard-bearer. He stood alone. He stood there long enough so that the next generation could take up the cause. If he had not been there, there would have been nobody.”
Pope John Paul II recognized Lejeune’s moral courage; the men were close friends and collaborators in fighting the culture of death.
Shortly before Lejeune’s death on April 3, 1994, Pope John Paul created the Pontifical Academy for Life, with Lejeune as its first president. Lejeune, deeply honored by this, said, “I’m dying while on special duty.”
He left this world saddened by his failure to find the cure for Down syndrome. But there is little doubt that he is still at work, interceding for his “little ones.”
On June 28, 2007 the cause for canonization of Jerome Lejeune was introduced, signaling the heroic soul of this pro-life geneticist. Let us hope that his influence will continue to inspire the conscience of the medical profession to serve those with genetic syndromes, and not seek to destroy them.
Leticia Velasquez writes from
East Moriches, New York.
Prayer to Obtain Graces by God’s Servant’s Intercession
God, who created man in your image and intended him to share your glory,
We thank you for having granted to your
Church the gift of professor Jerome Lejeune, a distinguished servant of life.
He knew how to place his immense intelligence and deep faith at the service of the defense of human life, especially unborn life, always seeking to treat and to cure. A passionate witness to truth and charity, he knew how to reconcile faith and reason in the sight of today’s world.
By his intercession, and according to your will, we ask you to grant us the graces we implore, hoping that he will soon become one of your saints. Amen.
As the cause for canonization of Lejeune moves forward, testimonies of medically inexplicable cures sought by his intercession will be recorded, and holy cards with this prayer are available at this address:
Postulation de la cause de béatification
et de canonisation du Serviteur de Dieu Jérôme Lejeune
Abbaye Saint-Wandrille F-76490
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