Presently, Mayrav Saar (New York Post, Nov. 15, “Postscript,” “The End of Down Syndrome”) reports:
“Today, 92 percent of mothers who get a definitive diagnosis of Down syndrome choose to abort, surveys show.” These parents are told by their physicians that this child will not live a meaningful life.
Many of those diagnosed infants who do survive abortion are deliberately denied any necessary surgery as well as intravenous feeding.
Down syndrome is associated with various degrees of mental retardation and such physical characteristics as stunted growth, flattened nose, shortened back and extremities.
However, a considerable number of families, instead of killing the child, provide their youngsters with regulated forms of therapy and tutoring. As a result, sizable numbers of these Americans graduate from high school and college and — as my next column demonstrates — enjoy meaningful lives.
Part of my book Insisting on Life was about the once widely known Baby Doe of Bloomington, Ind. A case protesting this imminent 1982 infanticide had gone to the Indiana Supreme Court. I have never forgotten the letter, after the subsequent imposition of the death sentence, to the Evansville (Ind.) Courier from Sherry McDonald on April 17, 1982:
“The night before little Infant Doe died, I called the Indiana Supreme Court and told them, ‘I am a Down syndrome child and I want the baby boy saved.’ ”
That court did not have time to decide on whether a death sentence was fully lawful. The baby boy died of starvation over six days when his parents — explaining they didn’t want a “retarded” child — refused surgery for his deformed esophagus.
This attitude of disposing of children who could not attain “humanhood” was part of the culture of the time — and continues now. In my research, I came across “Defective Newborns Are Dying By Design” in the June 14, 1981, Hartford Courant:
“At the intensive care nursery at Yale‐New Haven Hospital… sometimes life‐saving medicine or surgery is withheld. Other infants are allowed to starve to death. And in some cases, doctors at Yale‐New Haven have helped parents give their defective infants lethal drug overdoses, two doctors there said.”
With regard to Down syndrome patients dying by design, a 2011 advance in diagnosing this condition has been headlined in the New York Post story previously quoted, “The End of Down Syndrome”:
“A new simple way to detect Down syndrome in a fetus means the condition will be virtually extinct — but not without a great deal of controversy, experts say.
“Last month, San Diego‐based Sequenom released a test that allows doctors to screen for the most prevalent type of Down syndrome with only a blood test from the mother. The screening is available in 20 cities and is expected to hit New York soon. Two other companies have plans to release similar tests next year.”
This much faster method of diagnosis is also safer than such present methods as amniocentesis and chorionic villus sampling, which can lead to miscarriages. “The End of Down Syndrome” continues:
“The safer prenatal screenings will likely mean more women will be tested, and the number of women carrying babies with Down syndrome who terminate their pregnancies could increase, if not skyrocket.”
“Sequenom’s test, called MaterniT21, analyzes fetal DNA from a sample of the mother’s blood to test for the most common form of Down syndrome. In a study published last month in Genetics in Medicine, MaterniT21 detected 98.6 percent of Down syndrome cases.”
But it’s vital to remember that those Down syndrome children whose parents choose to let them live become adults. Therefore, however deadly this MaterniT21 test proves to be, the New York Post headline “The End of Down Syndrome” is not accurate.
The Post story ends by introducing Louis Sciuto, who was born with Down syndrome 22 years ago. He has grown up to volunteer regularly “at a Boston area food bank near his home. He has a job at Target. He has friends and a rich life.”
In my next column, I’ll discuss a new lifesaving discovery for those diagnosed with — or later found to have — Down syndrome that is reported and celebrated at Children’s Hospital in Boston. This came to my attention as I was reading “UN Gives Nod to World Down Syndrome Day” (disabilityscoop.com, Nov. 15). This annual Down syndrome awareness day will be adopted in December by the U.N. General Assembly.
As word gets around, maybe more mothers will bypass the doomsday MaterniT21 test. As the mother of Louis Sciuto says: “People with Down syndrome are not charity cases. They are contributing members of society” — when they are allowed to live.