Just when you think you’ve heard it all, people come up with some new ones. Questions, that is — about Sarah Palin’s baby son, Trig Paxson Van Palin, who has Down syndrome (at left with sister Piper at the Republican National Convention). Here are answers to some common questions.

1)  Down syndrome — that’s really bad, right? Doesn’t that mean he’s sickly and won’t live very long?

First of all, let’s think about this baby as just that — a baby. People with Down syndrome vary widely, and each has a unique personality, temperament, and combination of strengths and challenges. We haven’t been told anything about Trig’s health status yet, except that he has Down syndrome.

In general, people with Down syndrome have some degree of mild to moderate intellectual disability and have a higher risk for a variety of health problems, particularly heart trouble. At the same time their life expectancies have increased dramatically, from an average of about 9 years in the 1920s, to something reaching into the 60s today. (See my post here on Bert Holbrook Jr. of Waseca County, Minnesota, who just celebrated his 80th birthday.)

As recently as the 1960s, people didn’t know that people with Down syndrome were capable of learning, and sent them to institutions where they were most often neglected or abused. Most of the very negative images about them, and the worst health outcomes, date from that time.

With the improvements in education and health care of the last few decades, it’s not unreasonable to expect that children with Down syndrome born today can enjoy full, rich lives, form satisfying relationships, and gain skills that will allow them to work and make positive contributions to their families and communities.

2) If Palin opposes abortion rights, as she says, why did she have an amnio? Wasn’t that a waste of money?

Many women who oppose abortion nonetheless have prenatal testing so they can get information that may be useful in planning for their baby’s delivery and care. Gov. Palin has said she was glad to receive Trig’s diagnosis before he was born so she could learn about Down syndrome and come to terms with her son’s disability before she met him.

3) Ninety percent of American women who get a prenatal diagnosis of Down syndrome get an abortion. Doesn’t that prove people with Down syndrome have terrible lives?

Actually, no. People with Down syndrome are valued, valuable and contributing members of happy families. Their families report deep attachment to their children, and are saddened by those abortion statistics. Family members attribute the numbers to widespread public ignorance about people with Down syndrome; doctors who lack current information and aren’t well-trained to deliver prenatal diagnoses; lingering fears and stigma left over from the days when these people were institutionalized under horrible conditions; and unrealistic desires for the “perfect child.” See also this post.

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Down syndrome, also known as Trisomy 21, is a naturally occurring condition in which a person has three copies of the 21st chromosome rather than two copies. It is the most commonly occurring genetic mutation, and the one most frequently diagnosed prenatally. It has no known cause. Although medical research is proceeding, no treatments have yet been developed to improve cognition in people with DS. It is estimated that 350,000 Americans have Down syndrome. In the United States, between 85 and 90 percent of prenatally diagnosed cases of Down syndrome end in abortion.

People with Down syndrome have historically faced discrimination and exclusion, and were regularly institutionalized, imprisoned and involuntarily sterilized well into the 20th century. Until the 1970s, they were routinely denied access to education. They still lack appropriate health care and housing in many cases.

Educational access is now protected by law, and as a consequence people with Down syndrome are increasingly completing high school, embarking on post-secondary study, and living and working semi-independently. Many of the characteristics that were once thought to be endemic to Down syndrome now seem to have been caused by institutionalization and social ostracism.

All of them have unique personalities and interests, as their family members can tell you. Recent studies report that families of people with Down syndrome are affected more positively than negatively. Waiting lists of families wishing to adopt children with Down syndrome are now being reported. (See Lindh, Heidi L., et al., “Characteristics and perspectives of families waiting to adopt a child with Down Syndrome,” Genetics in Medicine, April, 2007.)

Down syndrome is characterized by developmental delays that are most often mild to moderate, but occasionally can be more severe. It is impossible to predict the extent of these delays based on prenatal diagnosis or observation of other physical symptoms. People with Down syndrome are at a heightened risk of heart problems, most of them surgically correctible, as well as early onset Alzheimer’s disease and leukemia. They often have recognizable facial characteristics, most notably the epicanthal fold of the upper eyelid that is also common in people of Asian descent.

Historically, the condition now known as Down syndrome was wrongly believed to be a racial degeneration, perhaps caused by disease or alcoholism in the mother. In Victorian England the disorder was labeled “mongolism” by doctor John Langdon Down, reflecting the popular Victorian belief that Mongolians were a lower form of human.

The genetic basis of the condition was discovered by Dr. Jerome Lejeune in Paris in 1959. Dr. Lejeune campaigned unsuccessfully against the use of his discovery for the purpose of prenatal screening and abortion, and called for ongoing scientific research into possible treatments for people with DS. In the years since, prenatal screening and abortion have flourished, while funding for research to treat the cognitive symptoms of people with DS has been meager.

In the 1960s, the British medical journal the Lancet recommended that the name “mongolism” be dropped after receiving a letter from leading geneticists charging that the name was “misleading” and had ”embarrassing” connotations. Subsequently, the World Health Organization dropped references to the term “mongolism” after receiving a complaint from a Mongolian delegate.

While considered offensive, the term is still in use among some medical professionals and appears in some medical texts as well as in the online prenatal guide of Harvard’s Brigham and Women’s Hospital. “Down syndrome” is the accepted term among professionals in the United States. In France, it is called “Trisomy 21.”

Here’s an essay by my daughter Margaret, which she did for a middle school writing assignment. It was not an easy task for her, and she went through many drafts. She did research, including interviewing her pediatrician. All the opinions expressed are hers.

Margaret’s essay came to the attention of the Washington Post health section, and was printed there in September, 1999. It is available through the Post archives.

By Margaret Muller

Today I’d like to tell you about Down syndrome. My purpose for talking about this is to be able to say, “Yes, I have Down Syndrome. Sometimes I have to work harder to learn things, but in many ways I am just like everyone else.” I would like to tell people that having Down syndrome does not keep me from doing the things I need to do or want to do. I just have to work harder.

Down syndrome is a condition and not a disease. You cannot catch Down syndrome like you can catch a cold or virus. It is something you are just born with–like blond hair and blue eyes. If you have Down syndrome when you are born, you will have it your whole life.

People without Down syndrome have 46 chromosomes, which carry all the genetic information about a person, in each of their cells. People with Down syndrome have one extra chromosome. So a person with Down syndrome has a total of 47 chromosomes in each cell. Doctors and experts are not really sure what causes it, but they say it occurs in about one of every 700 babies. This happens randomly, like flipping a coin or winning the lottery.

Everyone with Down syndrome is a totally unique person. The extra chromosome makes it harder for me to learn. Sometimes I need someone to say, “Settle down and get busy!”

Even though I have one extra chromosome, the rest of my chromosomes carry information from generation to generation just like yours. Chromosomes control certain genetic characteristics, like eye color, skin color, height and some abilities like music, art or math.

For example, I get my blue eyes from my father, my fair skin and freckles from my mother, my blond hair from my grandmother, my long thin feet from both my mom and my dad, and my need to wear glasses from both my grandparents and my parents. I like to concentrate on the ways that I am like everyone else.

I am very lucky to be alive today rather than 50 years or even 20 years ago, because back then the doctors and experts believed that people with Down syndrome were not capable of learning. But now we know that people with Down syndrome are capable of doing many different things.

I personally am doing things that some people didn’t think I could do. When I was born, somebody told my mom that it was too bad that I was named “Margaret” because I would never even be able to say my name. That person might never have expected that I could win four medals in Special Olympics swimming, be a green belt in karate, cook a pizza, read a novel, run half a mile or get up in front of the class and give a speech! With a lot of hard work and encouragement, I have been able to do all these things.

I am not sad about the fact that I have Down syndrome. It is just part of me. I have a great brother (most of the time), and parents who love me a lot. I have wonderful friends who enjoy hanging out and having fun with me. I have teachers who help me keep on learning new things. I am glad to be a student at Lincoln Middle School, because it is a great school and almost everyone is really nice. Down syndrome has not stopped me from having a worthwhile life.