A message of hope - or pressure to keep the baby?

CARLY WEEKS

From Tuesday's Globe and Mail

She has spent much of the past week trying to prove she has what it takes to make it in the White House.

But some people are far less focused on U.S. vice-presidential candidate Sarah Palin's political message than on the small, blanketed bundle that often accompanies her to public appearances.

Ms. Palin's five-month-old son, Trig, has Down syndrome, a diagnosis she received before his birth. Her family's decision to keep the baby even after prenatal testing revealed he had the genetic disorder has turned Ms. Palin into an overnight role model for parents who have a child with Down syndrome. In an age when prenatal testing has become increasingly widespread, giving more women the option to terminate pregnancies if they know their child will be born with the condition, it's a model that many families and advocates for people with Down syndrome are embracing.

"Maybe if there's a person who recently received a diagnosis or is about to receive a diagnosis, they're going to remember Sarah Palin," said Heather Kaine of Oakville, Ont., whose nine-year-old daughter, Emily, has Down syndrome. She and her husband, Darren, also have a seven-year-old son, Jack, who does not have the disorder.

Down syndrome is a genetic condition that occurs in about one in every 800 live births in Canada. Most people with Down syndrome have an extra copy of chromosome 21 that creates abnormalities that can result in developmental delays and physical problems. People with Down syndrome are at a higher risk for congenital heart defects, as well as a shortened life expectancy.

Screening tests of a mother's blood can be done to indicate whether the baby will have the condition. But the only way to definitively determine whether the baby will be born with Down syndrome is to do amniocentesis, an invasive procedure that carries a heightened risk of miscarriage.

Ms. Kaine said prenatal tests showed it was highly likely their child would be born with Down syndrome, but that didn't change the couple's minds about having the baby.

"I just can't imagine our life without her," Ms. Kaine said. "She is such a delightful little girl. She is very loving and very sweet and loves her brother."

But others fear Ms. Palin's emergence as a parental role model sends a different message. As a vocal opponent of abortion, Ms. Palin's widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to André Lalonde, executive vice-president of the Society of Obstetricians and Gynaecologists of Canada.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.

"The worry is that this will have an implication for abortion issues in Canada," he said.

The surfacing debate demonstrates how divisive the issue of prenatal testing remains and the mixed messages prospective parents in Canada hear.

Prenatal testing was once reserved for women older than 35, who are deemed at higher risk for pregnancy complications. But last year, the SOGC released guidelines recommending that the non-invasive genetic screening be available to pregnant women of all ages to detect potential abnormalities.

The guidelines sparked concern among the Down syndrome community that the wider availability of genetic testing would result in an increasing number of women opting to abort their pregnancies. If that occurs, they fear it could result in dwindling numbers of people living with Down syndrome, which could diminish funding for research or resource programs. Members of Canada's Down syndrome community say that many of the country's medical professionals only give messages of fear to parents who learn their baby will be born with the genetic condition.

"It's very dark," said Krista Flint, executive director of the Canadian Down Syndrome Society. "They hear a lot about the medical conditions that are sometimes associated with Down syndrome. They hear about the burden ... it places on children and a marriage. They hear about things like shortened life expectancy. They hear a lot about the challenges of a life with Down syndrome."

That's why Ms. Palin has become an example that could possibly stem the tide of families who abort fetuses after a positive determination for Down syndrome, she said.

"We know overwhelmingly the message families get is 'Don't have this baby, it will ruin your life,' and I don't think people would look at Sarah Palin and see a ruined life," Ms. Flint said. "Regardless of politics, I think it's a good example."

However, the SOGC says the country's medical professionals don't emphasize the burden of Down syndrome to pregnant women. Giving women balanced information about the potential consequences of either decision does not mean they are being encouraged to abort their pregnancies, Dr. Lalonde said.

"We offer the woman the choice. We try to be as unbiased as possible," he said. "We're coming down to a moral decision and we all know moral decisions are personal decisions."

Join the Discussion:

Sorted by: Oldest first
  • Newest to Oldest
  • Oldest to Newest

Latest Comments

Sponsored Links