Sunday, October 12, 2008


Sarah Palin is not the only one. Right now 400,000 mothers are going through the same experiences every day - the simple joys, the profound challenges, the unexpected blessings. Ann Robertson is one of them. Like Mrs. Palin, Mrs. Robertson recently gave birth to a child with Down syndrome.

When Mrs. Robertson heard Mrs. Palin was selected as the Republican Party’s nominee for vice president, her emotions jumped quickly, from surprise, to joy, to tears. “Whether or not people are going to vote for her, we [mothers of children with DS] all were excited,” she said.

October is National Down Syndrome Awareness month. But nothing has done as much recently to raise the public’s awareness of Down syndrome as events a month earlier. Alaska Gov. Sarah Palin’s political rise has placed the glaring spotlight of the media on the entire Palin family, and not least on its youngest member, 6-month-old Trig, who was born with Down syndrome.

Mrs. Palin’s emergence has also cast a soft, revealing light on a hitherto neglected issue: Down syndrome abortions. America’s epidemic of Down syndrome abortions disregards not only the sanctity of human life but also the profound contributions that persons with Down syndrome offer to the lives of those they touch.

Increasingly sophisticated prenatal genetic screening (involving sonograms and blood tests) can detect Down syndrome as early as the first trimester of pregnancy. These tests - what George F. Will has called “search and destroy missions” - have helped produce an up to 90 percent abortion rate for children with Down syndrome.

This horrendously high abortion rate is due in part to a medical establishment with a decidedly pro-abortion prejudice against babies with disabilities. Parents informed their child will be born with a disability are often shown pitiful videos of the challenges of rearing disabled children after they hear the “bad news” from doctors.

When I sat down with Ms. Robertson, she told me her experiences with the medical community were “mixed.” Eschewing invasive pre-natal tests for Down syndrome, Ann first learned her daughter, Bonnie, had the condition immediately after giving birth in a Fairfax County, Va., hospital. The first words of a member of the delivering staff were, “Did you get a blood test?”

Mrs. Robertson said her nurses were very supportive. Many told her what a blessing Bonnie was, and some even visited her on their free time to offer encouragement. But the neonatal pediatrician and genetic counselor gave her the feeling that it was, in Ann’s words, “all my fault. The attitude was, ‘you didn’t deal with it when you could have, so you have to deal with it now.’ ”

Such negativity is hardly unique. Numerous academic studies have shown physicians are overwhelmingly negative in communicating prenatal and post-natal diagnoses of Down syndrome. As Brian Skotko, a physician at Children’s Hospital Boston, wrote in a study published in Pediatrics, “Doctors have gotten better over time, but it’s been a very slow change, and they’ve really gone from terrible to just bad.”

When she heard about Bonnie’s condition, Ann felt “pretty scared at first.” But her fears were rooted in not knowing what to expect. “I couldn’t tell you the last time I had seen a child with Down syndrome before Bonnie was born,” Mrs. Robertson recalled. “The sadness came from the unknown.”

Fear of the unknown is precisely what legislators are attempting to alleviate with a new federal law. The Prenatally and Postnatally Diagnosed Conditions Awareness Act would require that families who receive a diagnosis of Down syndrome or other genetic condition be provided with up-to-date information about the nature of the condition - including the positive aspects of raising a child with a disability and connection with support services and networks that could offer help.

Co-sponsored by Sens. Sam Brownback, Kansas Republican, and Edward Kennedy, Massachusetts Democrat, the legislation would also create of a national registry of families willing to adopt children with genetic conditions. In late September, Congress passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act. It now heads to the president’s desk to become law.

In Ann’s case, after a few weeks of trepidation following Bonnie’s birth, she decided in a single moment “That’s it! No more tears, no more grieving.” Reassured by a pro-life doctor, who told her that “a child is a child no matter what condition they come out in,” her supportive husband, Brian, and her Catholic faith, Ann chose to accept Bonnie unconditionally, to love her the way she is and to embrace the challenges.

Many women choose to abort unborn children with developmental disabilities. But for Ann, the only choice was whether she would accept and love the child she had been given by God. “Life was already chosen,” Ann told me. “My choice was love and acceptance. I wasted time grieving for the child I didn’t have instead of accepting the child God gave me.”

Ann and Brian have been transformed since Bonnie came into their lives. “We don’t take anything for granted. Every little thing becomes great and joyful.” They have learned not to focus on the world’s idea of accomplishment. “What’s important,” said Ann, “is that this is a child with dignity whose every single accomplishment, from the small things to the large things, is celebrated because we know what it took for our child to do it.”

Bonnie has helped Ann understand “what human dignity is all about” and taught her that “being vulnerable is not a bad thing. That being dependent is not a bad thing.” In a world that hates dependency and shuns vulnerability, people with Down syndrome, Ann believes, are “a wake-up call to our consciences.”

As our conversation returned to the Palins, Mrs. Robertson recalled, “When [Sarah Palin] mentioned special needs families in her [Republican Convention] speech, I knew she was looking at me, and was talking to us personally. It was like a sigh of relief mixed with gratitude that finally someone recognizes we exist.”

Daniel Allott is senior writer at American Values, a Washington, D.C., area public policy organization. He is a former community support provider for persons with developmental disabilities.

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