When Sarah Palin burst onto the national political stage, the public quickly learned that she was the mother of Trig, a baby with Down syndrome now almost six months old. Many families with special needs children were thrilled when Palin pledged early on in the campaign to be an advocate for families like theirs. Many were excited to see an extraordinarily high profile voice on a long-neglected issue was emerging. Trig Palin shines a light on our failure as a nation to openly discuss Down syndrome and children with cognitive disabilities, and our need to better understand the intensely personal and private decision women make to continue or terminate a pregnancy for any reason. 

Down syndrome, or trisomy 21, is a chromosomal disorder caused by the presence of all or part of an extra twenty-first chromosome. The condition is characterized by a combination of major and minor differences in structure. Down syndrome is associated with some impairment of cognitive ability and physical growth, as well as facial appearance. Individuals with Down syndrome tend to have a lower than average cognitive ability, ranging from mild to moderate learning disabilities. Health concerns include a higher risk for congenital heart defects (as high as 40% in some studies), gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, thyroid dysfunctions, and an average life expectancy of 49. As adults, a high percentage hold jobs, but many have difficulty living independently.

Until 2007, it was typical only for pregnant women 35 years of age and older to be tested routinely to discover whether or not their fetus had the extra chromosome that causes Down syndrome. As a result, younger women and couples did not receive the diagnosis until the birth of their babies. However, a new recommendation from the American College of Obstetricians and Gynecologists now encourages doctors to begin to offer a new, safer screening procedure to all pregnant women, regardless of their age.

Increased prenatal genetic testing means that more women will be better informed and able to learn in advance the health status of their pregnancies. This is important information for women so that they are able to make the best choice possible regarding their pregnancies, whether it is readying themselves for special needs children or deciding to have an abortion.

A 1999 study found that 92% of women who are given a diagnosis of Down syndrome chose to have an abortion. But a growing number of parents of children with Down syndrome believe that more couples might choose to continue their pregnancies if they had access to better information and support and more fully appreciated what it really means to raise a child with the condition. For them, it is imperative to share their real-life experiences when a decision is too often dominated by overwhelming medical statistics and doctors who frequently describe only the negativities and difficulties of life with a disabled child.

"What we have found historically is that physicians are giving biased information when they're presenting a prenatal diagnosis," says executive director of the Down Syndrome Guild of Greater Kansas City Amy Allison.  According to a 2005 survey of nearly 1,300 parents of children with Down syndrome, a majority reported a high level of dissatisfaction and said that the doctors did not tell them about the positive potential of people with Down syndrome. In fact, most doctors have minimal training on how to relay a prenatal diagnosis of Down syndrome. So advocacy groups have embarked on education and outreach campaigns to educate physicians, medical students, and expectant parents about the genetic disorder. "Families [receiving a prenatal diagnosis of Down syndrome] can walk out the doors [of the doctor's office] feeling isolated and alone, or they can walk out feeling like they've got a support system," Allison adds. 

In Massachusetts, volunteers in a "first call" network link "veteran" parents of Down syndrome children to new ones, and are also now offering information and support to couples still deciding whether or not to continue a pregnancy. In Detroit, Michigan, a mother of a pre-teen daughter with Down syndrome has coordinated presentations with genetic counselors and obstetricians at local hospitals in which she and her daughter openly talked about themselves. "We want people who make this decision to know our kids. We want them to talk to us," said the mother. Meeting with local doctors, rewriting outdated literature, and urging health care workers to give out information about support groups is critical, say parents.       

Parent advocates say that the joy and richness of their children's lives is poorly understood. They have seen that early medical intervention, expanded therapeutic approaches, and expertise in infant heart surgery now stave off many health problems and increase cognitive potential. Legally mandated inclusion in public schools has mainstreamed children with Down syndrome, created opportunities for friendship and increased socialization, and fostered broader social acceptance and awareness of the condition.

At this time, Down syndrome is the most commonly occurring genetic condition. One in 773 live births is a child with Down syndrome, , which amounts to approximately 5,500 children born with the condition annually in the United States. Due to the number of abortions that occur due to this diagnosis, the population of Down syndrome has dwindled to approximately 350,000. With the previously mentioned ACOG recommendations, parents fear an even lonelier world for their children, with even fewer people like them. Fewer numbers of children and adults with Down syndrome could eventually mean less institutional support, reduced funds for medical research, and an overall lack of acceptance for disabled individuals. Looking out for their children's future, parent advocates often identify as pro-choice and do not seek to force anyone to take on the task of parenting a disabled child. What they do want is destigmatize Down syndrome, humanize their children, and secure better resources for them.  

All of which explains why the emergence of Sarah Palin and her baby Trig has brought hope and validation to so many special needs families. But hope is only the beginning and it is not enough. Children and adults with special needs need societal understanding, respect, and acceptance, expanded funding for improved education, training, and care, improved and specialized services and programs that are portable from state to state,  and an end to waiting lists for services. More than anything, society needs to see them as valued individuals in our society who should not be feared, but loved and accepted.