Down Syndrome Parents: Palin Is Role Model

Todd Palin, husband of Republican vice presidential candidate Sarah Palin, holds his son Trig as his wife addresses the crowed at the Republican National Convention in St. Paul, Minn., Wednesday, Sept. 3, 2008. (AP Photo/Paul Sancya)
AP Photo/Paul Sancya

When Sarah Palin was four months pregnant with her fifth child, she received life-changing news: her baby had Down Syndrome. Today, five-month-old Trig is one of 400,000 Americans living with Down Syndrome. And the Palins' decision to have the baby has made her a role model to the parents of some 5,000 children born with the genetic disorder each year.

While most Americans hadn't heard of Sarah Palin before she became John McCain's running mate, she was well known to many parents of children with Down Syndrome, CBS News anchor Katie Couric reports.

"Gov. Palin went through the same thing we did," said parent Sharon Vopal. "Same prenatal testing; same screening."

Advances in prenatal testing mean more and more expectant parents are finding out earlier. And for some, the reality is too grim to bear.

"Forty percent of babies with Down Syndrome are going to be born with congenital heart disease," said geneticist Robert Marion. "Every baby with Down Syndrome has developed mental disability. A small minority grow up to be independent."

Marion says the vast majority of women who receive a prenatal diagnosis terminate their pregnancies.

"That is such a personal decision and it shouldn't be colored by anything that the doctor says to them about the diagnosis," Marion said.

But that isn't always the case, according to Vopal, who lives in Basking Ridge, N.J.

"I knew right away when she [the doctor] walked in," Vopal said.

Sharon and her husband Jim were expecting twins when tests revealed that one of them has Down Syndrome.

"What did she recommend? Did she say what your options were?" Couric asked.

"She said, 'You're early enough along in your pregnancy that you can terminate,' and in our case, since it's twins, the term she used was 'selective reduction,'" Vopal said.

But Jim is Catholic, and while Sharon is not, they're opposed to abortion - just like Gov. Palin.

"After telling her that we would not terminate, nothing else was discussed," Vopal said. "No information. No resources. No help. No advice. They gave Jim a business card for us to call a genetic counselor, if we chose to. And they led us to a side door."

Katie Couric's Notebook: Down Syndrome
The Vopals' experience is a common occurrence, says Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City.

"What we have found historically is that physicians are giving biased information when they're presenting prenatal diagnosis," Allison said.

According to a 2005 survey of nearly 1,300 parents of children with Down Syndrom, a majority reported that the doctors "did not tell them about the positive potential of people with Down Syndrome."

So advocacy groups like Allison's have embarked on a campaign to educate physicians and, in turn, expectant parents about the genetic disorder.

Through a program called "Changing Lives," parents of children with Down Syndrome go directly to doctors and present their version of Down Syndrome 101, giving advice on how to break the news.

"Families can walk out their doors feeling isolated and alone, or they can walk out feeling like they've got a support system," Allison said.

And often, the supporting cast steals the show.

One Down Syndrome teen, Jack Murphy, said: "I want people to know about me - that I'm outstanding, outrageous, smart and intelligent and I know I'm good looking."

The Vopals have now had their twins, and they hope - as the rest of the country learns more about Sarah Palin - Americans also learn more about Down Syndrome.

"She made her choice and we made our choice and other people will make decisions that are best for them," Jim Vopal said.