The end of Down syndrome
A controversial new test means disorder will become extinct from ‘eugenics,’ doctors sayLast 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.
“What you end up having is a world without people with Down syndrome,” says Paul Root Wolpe, director of the center for ethics at Emory University. “And the question becomes is that a good thing or bad thing?”
Because the current methods of screening for Down syndrome, amniocentesis and chorionic villus sampling, carry a risk of inducing miscarriage, only about 2% of pregnant women in the nation undergo the screening, says Dr. Brian Skotko, of the Down syndrome program at Children’s Hospital Boston.
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.
Today, 92% of mothers who get a definitive diagnosis of Down choose to abort, surveys show.
“It’s a real conundrum,” Wolpe says. “Human beings have always tried to fight and cure disease, and this tool, projecting it forward 50 years when it’s powerful enough, will make a difference in eliminating those diseases in the world.
It’s a tough call."
People with Down syndrome typically have an extra copy of one of their chromosomes, usually chromosome 21, which changes their body and brain’s development and causes mental and physical problems such as mild to moderate mental retardation and unusual facial characteristics.
Older women are at an increased risk of carrying a baby with Down syndrome -- a 20-year-old woman has a 1 in 1,667 chance of having a baby with Down syndrome; but her risk jumps to 1 in 30 by the time she’s 45.
Skotko says that because more older women are having babies than ever before, the percentage of babies born with Down syndrome should have risen 42% between 1989 and 2006.
Instead, the number has decreased by 11% during that time, largely due to elective termination.
I cannot imagine life without waking up to your beautiful face every morning....
I can't imagine life without your vivacious and charismatic personality in it~ your unique ability to charm loved ones and strangers alike with one crinkly-eyed smile.
I don't even want to think about what my life would be like without the sound of your laughter, the smell of your skin, the little games you play...
There was a time when I worried about what you might look like some day...silly superficial fears that somehow you would be so different, it wouldn't "feel" like you were mine.
I couldn't have been more wrong...
There was a time when I worried about "mild to moderate mental retardation" and what that would mean for my baby girl.
I'm finding out those fears were so unfounded as well....
...because I've learned something so simple, so obvious, in these past twenty-two months of calling you mine, that it shouldn't need repeating; and yet it does.
Love never fails.
...it bears all things, believes all things, hopes all things, endures all things.
Love never fails.
And though the times are changing...new tests and new statistics and maybe a new future for the world as we know it, I am more convinced than ever that you were no accident. You are not a disorder, you are not a mistake, and you are not a disease to be eradicated.
You are desired, you are a blessing, and you are a gift....
Our lives were not devastated by the receiving of that gift. They were enriched and enhanced and filled to overflowing, and simply put, I would not want to experience...
...a life without Lily.