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Disorder doesn't mean doomed

Alternative views of Down syndrome

Ben Allard hit his dad's underhand pitch solidly and began circling imaginary bases in his Franklin backyard. A 7-year-old with Down syndrome, Ben crossed home plate and celebrated by bear-hugging his younger brother Max . Looking on, the boys' parents, Mike and Beth Allard, shared a smile.

Today, the Allards can't imagine life without Ben, a warm-hearted boy who loves hockey and high-fives. But when doctors told them during pregnancy their child would be born with the genetic disorder, they say their physicians described a life scarcely worth living.

``The way they told you, it was like they were telling you your son was in a car accident," said Beth Allard. ``And we had to decide whether to take him off life support."

For parents who have received a Down syndrome diagnosis during pregnancy or at delivery, the Allards' story is probably familiar . Brian Skotko , a joint-degree student at Harvard's John F. Kennedy School of Government and Medical School, last year published two research papers that concluded physicians often relay the news in an overwhelmingly negative way, focusing on the limitations and hardships a child with Down syndrome may face.

In response to Skotko's studies, US Senators Edward Kennedy of Massachusetts and Sam Brownback of Kansas have introduced a bill that would require doctors to provide current medical information about conditions like Down syndrome and referrals to support services. Kennedy, whose late sister Rosemary was mentally retarded, favors abortion rights and is an outspoken advocate for people with disabilities. The medical information legislation is now before the Senate Committee on Health, Education, Labor and Pensions.

Of the 1,250 parents of children with Down syndrome surveyed in Skotko's work, many reported that doctors used insensitive or offensive language in communicating the diagnosis. Many said they were advised to put their baby up for adoption or were scolded for not having prenatal testing to identify the condition.

Skotko, who has a sister with Down syndrome, said that while most parents are understandably shocked by a Down syndrome diagnosis, they need to know that individuals with Down syndrome are increasingly living independent lives.

``Too often, the potential of children with Down syndrome isn't conveyed," Skotko said. ``Parents are rarely being told that people with Down Syndrome can live rich, full lives."

Approximately one of every 1,000 children in the United States is born with Down syndrome, a genetic cause of mild to moderate mental retardation. With studies estimating that as many as 80 percent of Down syndrome pregnancies are terminated, Skotko's findings have sharpened fears, particularly among disability advocates and abortion opponents, that doctors are subtly pressuring -- unconsciously or otherwise -- women to have abortions.

``I felt they wanted to do everything they could to convince us to terminate the pregnancy," Beth Allard said, as her husband nodded in agreement.

For Beth Allard, the doctors' depiction of Down syndrome raised doubts about continuing the pregnancy. But her husband was steadfast in his conviction to have their first born.

``For me, there wasn't a choice," said Mike Allard, who is Catholic. ``But it wasn't a religious thing. It was a dad thing."

With prenatal screening becoming more sophisticated and widespread, Skotko's study has fueled the emotional, ethically delicate debate over the use of genetic testing to avoid the birth of disabled children.

``Those who care deeply about the rights of the disabled are afraid that this technology creates a not-so-subtle pressure to terminate pregnancies," said Andrew Imparato , president of the American Association of People with Disabilities.

Allen Crocker , who directs the Down syndrome program at Children's Hospital Boston, said Skotko's findings of how doctors break the news to parents confirmed what many in the field had known for years.

``There's a deep bias that children that are different are not welcome," he said. ``People are getting warier and warier that it is getting easier to sacrifice a child."

The Rev. John Paris , a bioethicist at Boston College, said doctors reflexively present information to expectant parents that skews the decision process toward termination.

``It's taken as a given that no one would want to be burdened with such a child," Paris said. ``The implication is that if the baby's not perfect, then it shouldn't have happened."

But Dr. Diana Bianchi of Tufts-New England Medical Center's Floating Hospital, who coauthored a recent study that found that noninvasive first-trimester Down syndrome screening is more precise, said the earlier tests give women more time to understand the diagnosis and work through their grief before deciding how to proceed.

Sarah Cullen , who directs the Massachusetts Down syndrome Congress's Parents First Call program, which matches volunteers to parents who have received a Down syndrome diagnosis, said speaking to someone with first-hand knowledge is often reassuring.

``We tell them that it's a beautiful baby first," she said. ``It's a beautiful baby who happens to have Down syndrome second."

Madeline Will of the National Down Syndrome Society said the increase in prenatal screening ``underscores the importance that families who receive a Down syndrome diagnosis get the most accurate and sensitive information possible." Still, disability advocates fear that advances in prenatal testing are outpacing the ethical debate .

``We have to decide as a society what forms of life are valuable," Skotko said. ``Do we as a society believe people should be able to terminate a pregnancy solely because the child will have Down syndrome, or any other undesired trait? Where do you draw the line?"

For the Allards, raising Ben is filled with gifts and challenges. He is popular in his inclusive kindergarten class, and is a hard worker . Yet he is aware that his 3-year-old brother is more naturally gifted, and not long ago disagreed when his mother called him handsome, saying, ``I'm different."

From time to time, that difference draws odd looks and comments, but Beth Allard has learned to accept it. Not long ago, a woman told Beth Allard she was sorry that she had a child with disabilities.

``I said, `Sorry? There's nothing to be sorry about!' " she recalled. ``He's wonderful. He's brought so much joy in my life."

Peter Schworm can be reached at schworm@globe.com.

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