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 Palin, Robertson recently gave birth to a child with Down syndrome.
When Robertson heard Palin had been selected as the Republican Party’s nominee for vice president, her emotions jumped quickly, from surprise, to joy, to tears. “Whether or not people were going to vote for her, we (mothers of children with DS) all were excited,” she said.
Alaska Governor Sarah Palin’s political rise placed the glaring spotlight of the media on the entire Palin family, not least on its youngest member, sixmonth- old Trig, who was born with Down syndrome. Palin’s emergence 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.
Down syndrome, or trisomy 21, is a chromosomal disorder caused by the presence of an extra 21st chromosome. It is named after John Langdon Down, the English physician who first described the condition in 1862. According to the National Down Syndrome Society, one in every 733 live births is a child with Down syndrome (the proper syntax, it notes, because the condition does not defi ne the child), making it the most commonly occurring genetic condition, representing approximately 5,000 births per year in the United States.
Increasingly sophisticated prenatal genetic screening (involving sonograms and blood tests) can now detect Down syndrome as early as the first trimester of pregnancy. But these tests—what George F. Will has called “search and destroy mission[s]”—have helped produce an abortion rate of up to 90 percent for children with Down syndrome. That rate explains the marked decrease in the population of Americans with the condition. According to a study published in the American Journal of Obstetrics and Gynecology, the number of Down syndrome live births declined 7.8 percent between 1989 and 2001.
The number of children born with Down syndrome could plummet even further if physicians begin to follow the advice of the American College of Obstetricians and Gynecologists (ACOG), which in 2007 recommended that all pregnant women, regardless of age, be offered screening for Down syndrome. (At the moment, all pregnant women over the age of 35, who are appreciably more likely to conceive children with the condition, are offered prenatal testing, and younger women are increasingly requesting it on their own.)
Many doctors welcome universal screening. Dr. Nancy Greer, medical director of the March of Dimes, an organization that promotes abortion of unborn children with disabilities, told the New York Times that the new ACOG guidelines allow more time for women to “make decisions” about whether to continue their pregnancies.
Other physicians are concerned about the negative effects of universal screening. Brian Skotko, a physician at Children’s Hospital Boston, Boston Medical, and co-author of the awardwinning book Common Threads: Celebrating Life with Down Syndrome, wrote in a letter to the editor of the Journal of Obstetrics and Gynecology that “in its support for prenatal screening for Down syndrome, the American College of Obstetricians and Gynecologists has endorsed a climate in which disability discrimination could more easily fl ourish.” And it could. By one estimate, the number of newborns with Down syndrome could drop four-fold, to fewer than 1,200 a year, with universal prenatal screening.
Part of the reason why pre-natal disability discrimination has thrived resides in a medical establishment with a decidedly pro-abortion prejudice against babies with disabilities. Parents informed that their unborn 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.
Last September, Dr. Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC) fretted to the Globe and Daily Mail newspapers that Sarah Palin’s decision not to abort “could have detrimental effects on women and their families.” Palin’s decision to keep her baby, Lalonde explained, “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. The worry is that this will have an implication for abortion issues in Canada.”
Dr. Lalonde was careful to add that “[Canadian physicians] offer the woman the choice. We try to be as unbiased as possible.” He also insisted that “the country’s medical professionals don’t emphasize the burden of Down syndrome to pregnant women” and that “giving women balanced information about the potential consequences of either decision does not mean they are being encouraged to abort their pregnancies.” Lalonde’s assertions are incredible given Canada’s abortion rates for children with Down syndrome, which range from 80-90 percent.
Sitting down with Ms. Robertson in September, she told me her experiences with the medical community were “mixed.” Eschewing invasive pre-natal tests for Down syndrome, Ann fi rst learned that her daughter Bonnie had the condition immediately after giving birth in a Fairfax County, Virginia hospital. The first words of a member of the delivery staff were, “Did you get a blood test?” 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. In an academic study published in Pediatrics, Dr. Skotko found that physicians were overwhelmingly negative in communicating a diagnosis of Down syndrome in newborn infants, noting that “doctors have gotten better over time, but it’s been a very slow change, and they’ve really gone from terrible to just bad.”
Physicians can be even more negative when delivering pre-natal diagnoses of Down syndrome. Skotko, who sits on the board of directors of the National Down Syndrome Society, conducted a 2005 study that found that of 141 mothers who had received a definitive diagnosis of Down syndrome before their child was born, most, according to Skotko, said that “doctors did not tell them about the positive potential of people with Down syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups.” Other studies have found many pregnant women feel pressured to undergo invasive pre-natal testing, then, if the test comes back positive for Down syndrome, to abort.
But physicians often receive inadequate training. In a survey of 2,500 medical school deans, students and residency directors, 81 percent of medical students reported that they “are not getting any clinical training regarding individuals with intellectual disabilities,” and 58 percent of medical school deans say such training is not a high priority. In a questionnaire completed by 532 ACOG fellows and junior fellows, 45 percent considered their residency training regarding prenatal diagnosis “barely adequate” or “nonexistent,” and only 28 percent felt “well qualified” in general prenatal genetic
counseling. Skotko says there is an urgent need for guidelines for how physicians should be trained and how the diagnosis should properly be given.
A CULTURE OF PERFECTION
The medical establishment’s prejudices are a reflection of a broader culture increasingly intolerant of genetic imperfections. Earlier this year, a British couple subjected their toddler daughter with Down syndrome to a series of cosmetic procedures to alter her appearance so she could “fit in” with other students. (People with Down syndrome have distinctive physical features, including low muscle tone, a longer tongue, small stature and upward- slanting eyes.) Cosmetic surgery for children with Down syndrome has been in use in the US for 20 years, and though it is not common, it happens often enough that the National Down Syndrome Society issued a position statement, which declares that “the goal of inclusion and acceptance is mutual respect based on who we are as individuals, not how we look.”
More broadly, Gallup has found that more than six in 10 Americans do not want a child with an intellectual disability at their child’s school. An opinion survey by Disaboom, a Web site by and for persons with developmental disabilities, found that 52 percent of respondents would rather die than live with a life-altering disability. A Welsh mother recently stood trial for allegedly drowning her four-year-old daughter in a bathtub because she was ashamed and embarrassed by her daughter’s cerebral palsy.
Polls suggest public support for abortion ranging from 55 percent to 75 percent when there is a strong likelihood of a mental or physical defect in the child. According to a 2006 poll by National Opinion Research Center, 70 percent of Americans believe a woman should be able to obtain a legal abortion if there is a strong chance of a “serious defect” in the baby. Other genetic conditions such as spina bifida, dwarfism and cystic fibrosis also carry abortion rates approaching 80 to 90 percent.
“Serious defect” is measured on a sliding scale. Unborn babies throughout the world are routinely aborted for having club feet, cleft palates, being the “wrong” sex and for having extra digits. At least 28 states recognize “wrongful life” or, more commonly, “wrongful birth” lawsuits, in which parents of disabled children are granted compensation, sometimes reaching into millions of dollars, when doctors fail to inform them that their unborn child may be at higher risk of a genetic disorder. Such suits may partly explain the medical establishment’s pro-abortion prejudice against disabled babies.
The cultural prejudice against children with Down syndrome was also evident in the political reaction to Palin’s decision not to abort. Many liberal politicians and commentators criticized Palin’s choice, with some viewing it as some how antithetical to women’s rights. Other criticism had eugenic overtones. Nicholas Provenzo of the Center for the Advancement of Capitalism, a libertarian organization, wrote that he was “troubled” by Palin’s decision, because “it is crucial to reaffirm the morality of aborting a fetus diagnosed with Down syndrome.” According to another blogger, those who lauded Palin’s decision not to abort were guilty of “the worship of retardation.”
MISINFORMATION DRIVES THE PREJUDICE
The fundamental misconception at the root of such prejudice is that persons with disabilities inevitably lead unhappy lives and overburden their families and society. In short, that the lives of persons with disabilities are lives not worth living.
In a 2007 study published in the American Journal of Obstetrics and Gynecology, Dutch researchers interviewed women who aborted babies because of Down syndrome. Ninety-two percent said they believed the child would never be able to function independently; 90 percent considered the abnormality too severe; 83 percent said they felt the burden for the child was too heavy; and 73 percent considered the burden too heavy for their other children.
Persons with developmental disabilities do present extra challenges. Although the intellectual ability of children with Down syndrome varies greatly, most fall into the mild to moderate range of mental retardation. They are also at greater risk of developing a host of medical conditions, including heart defects, gastrointestinal blockages as well as diabetes and Alzheimer’s. It was perhaps with knowledge of these potential challenges that Palin said she initially felt “sad” when she heard about Trig’s condition, admitting that the revelation was “very, very challenging.” Palin’s insecurity caused her to hide Trig’s diagnosis from her children until his birth.
Ms. Robertson echoed Ms. Palin’s sentiments; she told me she felt “pretty
scared at first [after Bonnie’s diagnosis].” But Robertson’s 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,” 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. First introduced in Congress in 2005, the Prenatally and Postnatally Diagnosed Conditions Awareness Act requires that families who receive a diagnosis of Down syndrome or other genetic conditions be provided with up-to-date information about the nature of the condition and connection with support services and networks that could offer help.
Co-sponsored by Senators Sam Brownback and Edward Kennedy, the legislation also expands and further develops a national clearinghouse of information for parents of children with disabilities, provides for the expansion of national and local peer-support groups, and calls for the creation of a national registry of families willing to adopt children with pre- or post-natally diagnosed conditions. The legislation offers pregnant women more accurate information about raising a child with a disability, including the positive aspects, and helps them to make betterinformed decisions.
On September 23, 2008, the Senate unanimously passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Two days later, the House of Representatives passed the bill, and on October 10 President Bus signed it into law.
In an interview, Dr. Skotko told me he was “pleased” and “delighted” with the Brownback-Kennedy bill because it will help “to ensure that parents receive up-to-date information so that they can make informed decisions.”
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.” Re assured 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, who is prolife, the only choice was whether or not 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.”
Numerous studies have shown that children with Down syndrome affect their families more positively than negatively, and help cultivate virtues like kindness, empathy and respect for diversity. This helps explain why there are waiting lists of couples ready to adopt children with Down syndrome. The recognition of these positive effects was evident in the Palin’s reaction to Trig’s diagnosis. The family released a statement after his birth in which the words “beautiful,” “adored,” “blessed,” “privileged,” “gift,” and “unspeakable joy” were used to describe Trig and the effect he had already had on them.
Ann said she 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.” Ann said they have learned not to focus on the world’s idea of accomplishment. Whether Bonnie gets the scholarship, plays on a sports team, or becomes an artist—though those things can happen—are not really important anymore.
“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. I don’t take anything for granted. Every little thing becomes great and joyful.”
But the “little things” have gotten bigger for people with Down syndrome, who today often are included in regular academic classrooms, graduate from high school and receive college or post-secondary educations. Most adults with Down syndrome hold down regular jobs, working in banks, corporations, hotels, restaurants, and other settings. Most form ongoing and deep relationships and some marry. These advancements and others are both a cause and an effect of an average life expectancy that has more than doubled—from 25 years in 1980 to 56 years today—for individuals with Down syndrome.
But the greatest accomplishments of persons with Down syndrome are often less tangible. Ann said Bonnie has helped her 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, said Ann, are “a wakeup call to our consciences.”
Because they require more patience and self-giving, they can be sources of growth, tolerance, joy, and hope to those they encounter. Unlocking these powerful truths is especially important in a time when superficial, exploitative, and selfish relationships have become all too common. As Simon Barnes, a
sportswriter for the Times of London, put it simply in a piece about his son with Down syndrome: “human beings are not better off without Down’s syndrome.”
It was in the spirit of self-sacrifice that Thomas Vander Woude acted last September 8. When Vander Woude’s son Joseph, who has Down syndrome, fell through a small piece of metal that covered a septic tank in the family’s backyard, Thomas jumped in after him, submerging himself in waste in order to keep his son’s head above the sewage. When rescue workers arrived—after the father and son had been in the tank for 15 to 20 minutes—they pulled the two out, but Vander Woude was unconscious. Joseph survived but his father was pronounced dead at a hospital. Francis Peffley, pastor at Vander Woude’s church, Holy Trinity, told the Washington Post that Vander Woude’s courageous act of self-sacrifice to save his son surprised no one, adding, “They always considered Joseph a wonderful blessing to the family.”
In a telephone interview with Dr. Skotko last September, I asked him to reflect on what Sarah Palin’s political emergence could do for the cause of Down syndrome awareness. He told me that Palin’s rise marks “an unprecedented moment in American politics” because “she is someone who understands that there are lots of obstacles that parents of children with Down syndrome face.”
As the brother of a woman with Down syndrome, Skotko was happy to see the public discussion the Palin family has generated about the condition, because “[people] who have Down syndrome have been asking for their voices to be heard…for decades.”
Ms. Robertson recalled, “When [Palin] mentioned special needs families in her speech [to the Republican National Convention], 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.”
In the same speech, Palin described her experience with Down syndrome, saying, “Sometimes even the greatest joys bring challenge. And children with special needs inspire a very, very special love.” Indeed they do. But first we must let them.
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