Down Syndrome 101
One of the most memorable images of the 2008 presidential campaign so far is that of 7-year-old Piper Palin using her own spit and tiny fingers to smooth her baby brother's hair as he slept in her lap while their mother, vice-presidential nominee Gov. Sarah Palin, spoke to the Republican National Convention Wednesday night.
All politics aside, it was a charming moment, made all the more poignant by the widespread knowledge that baby Trig Paxson Van Palin, born in April, has Down syndrome.
Trig's appearance on the national scene is certain to draw attention to Down syndrome. He certainly piqued my interest in the condition, which is one that I kinda sorta thought I knew about. But, when it came down to brass tacks, I didn't know as much as I thought.
The National Down Syndrome Society (NDSS) was prepared for the likes of me, though, having issued early this week a document advising the media as to the preferred wording to use when discussing Down syndrome. A related document rebuts myths surrounding the condition.
I was off to a good start: I already knew that it's Down, not Down's syndrome, and that it's a syndrome, not a disease. After that, though, I learned a lot.
Here's a quick rundown on Down, from the NDSS:
* Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. . .
* . . . which include low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.
* Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States. More than 400,000 people in the U.S. have Down syndrome.
* Life expectancy for individuals with Down syndrome has increased dramatically in recent years, from just 25 years in 1983 to 56 years today. That's due in large part to the fact that many diseases and conditions for which people with Down syndrome are at increased risk, including congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions, are increasingly treatable.
* About 80 percent of children with Down syndrome are born to women younger than 35, simply because younger women have more children. However, the likelihood of bearing a child with Down syndrome increases with the age of the mother.
* Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability.
I talked with Brian Skotko, a member of the NDSS board of directors and a physician with Children's Hospital Boston -- and a sibling of a woman with Down syndrome -- to address a few questions of my own.
For instance, I wondered whether the incidence of Down syndrome is on the rise. Skotko says there's no telling from the official government figure cited above because it represents the first time that the U.S. Centers for Disease Control has actually counted. However, he says, research published in the American Journal of Obstetrics and Gynecology in 2004 showed a decrease in the number of cases of Down syndrome of about 7.8 percent between 1989 and 2001. "The implication," he says, "is that most can be attributed to the use of prenatal screening." And, by further implication, the termination of some of those pregnancies.
One of the myths the NDSS dispels is that people with Down syndrome are always happy. Of course, that's not the case: As the sheet says, "People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior." So where did that misconception come from?
"The real truth" Skotko says, "is that people with Down syndrome bring a lot of joy, a lot of passion to life. At the same time, they share all the other emotions we all experience." What others may perceive as full-time happiness, he says, might better be described as a kind of perseverance and forgiveness and an ability "to teach us to appreciate that richness that sometimes is nestled in small places."
The NDSS notes that researchers are working toward identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that someday it will be possible to improve, correct or prevent many of the problems associated with Down syndrome. Since I have often heard people say of their loved ones with Down syndrome that they've provided so much joy and insight, they wouldn't change a thing about them, I wondered whether such research was even all that welcome.
Skotko couldn't answer exactly that, but he did say that, in his experience talking to mothers of people with Down syndrome, most reported feeling shock, sadness, anger, disbelief and other negative feelings when they learned that their child would have Down syndrome. But later in life, he reports, those mothers say their children with Down syndrome have served as "life coaches, teaching us invaluable lessons."
"They tell me, 'I can't imagine our lives any other way,' " Skotko says.
Do you know someone with Down syndrome? How would you feel if research led to a way to prevent or "cure" the condition? And is Trig Palin's newfound celebrity likely to help others with Down syndrome?
Jennifer LaRue Huget
September 5, 2008; 7:02 AM ET
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