Clipped From The Daily Intelligencer
A2 Sunday, January 6,2008 The Intelligencer To Place a Classified Ad Call 215-345-3010 • 215-538-6362 www.phlllyburbs.com/intell Risk Continued from Page A 1 Though more accurate than previous screens, the noninvasive test can only determine a greater risk for Down, not whether the baby does or does not have it. The underlying issue, though, isn't the test—it's what happens with the test results. When told their babies have a higher chance of having Down, nine out of 10 pregnant women terminate the pregnancy, national studies have estimated. Santoro, Drenth and parents like them nationwide think that's because the women are presented with few options. They want doctors and genetic counselors to offer parents not just information on abortion but positive information on Down syndrome and local support groups. Here in Bucks County, they're having some success. Drenth says some OB-GYNs are passing on the contact information for the group she and Santoro now lead, the Bucks County Down Syndrome Interest Group, which meets monthly in Doylestown. Drenth, who opposes abortion in general, and Santoro, who says she is for abortion rights, say that's all they want. "I can't put my beliefs on anybody else. All I want is for people to be given other information," Drenth said. "If all you're being told is that having a child with Down syndrome is awful, and most women in your situation abort, and if you don't know anything about Down syndrome yourself, you're scared, and you have nothing else to go on. We just want to give them another view." Sens. Edward Kennedy, a Democrat who supports abortion rights, and Sam Brown- back, an anti-abortion Republican, have teamed up on a bill that would require doctors to offer more thorough medical information about Down and referrals to support networks. Though that bill specifically addresses Down syndrome, the overall issue raises questions about the ethics of terminating not a pregnancy, but a specific pregnancy in which the child is deemed genetically inferior. As such, its significance reaches beyond Down syndrome, said Dr. Art Caplan, head of the Center for Bioethics at the University of Pennsylvania. "It's clear that genetic testing is going to expand past detecting terminal illnesses to detecting imperfections and minor problems," said Caplan, whose work often focuses on genetics and reproductive technologies. "It's one thing to say, 'I don't want a pregnancy.' It's another to say, 'I don't want to have a baby with Tay Sachs disease, which is going to kill him anyway,' versus, 'I don't want a baby with Down,' versus, 'I don't want a baby who's blind,' versus, 'I don't want a baby that's gay.' Every one of those could, and eventually will, be a part of genetic testing. In that sense, this debate isn't about Down testing, it's about how to handle genetic information about the fetus." Some advocates worry that expanding first-trimester Down syndrome screening to all women will lead to more abortions, greatly decreasing the thousands of children with Down syndrome now born each year in the United States. Supporters of the screening say not all women and their partners want to or are able to raise a disabled child. "They don't have the resources, don't have the emotional stamina, don't have the family support," Dr. Deborah Driscoll told the New York Times last year. She is head of the obstetrics department at the University of Pennsylvania and was one of the lead authors of the recommendation for expanded screening. "We are recommending this testing be offered so that parents have a choice." Most Americans seem to agree. About seven out of 10 people believe a woman should be able to choose abortion if there is a strong chance of a serious defect in the baby, according to a 2006 poll. But what is a "serious defect," and who defines it? The answer may be different for each person and that complicates the discussion, Caplan said. People with Down may have skill levels below those considered normal, he said, but the condition is not a death sentence. "Unlike testing for neural tube defects, where they are born with most of their brain missing, this condition itself isn't as much of a burden," he said. "That makes it contentious, because you're arguing about quality of life, rather than a horrifically painful condition that would be difficult td endure." For parents and others who love someone with Down syndrome, the issue is also about what the world will look like a generation from now, with far fewer people with Down syndrome living. "I feel very sad for anyone who would terminate because of a prenatal diagnosis," said.San- toro, a graphic designer turned stay-at-home mom. "I cannot imagine my life without him." It wasn't like that at first. When she answered the phone a week after Roman's birth and the doctor told her, "We're 99 percent sure your baby has Tri- somy 21. Do you have any questions?" a stunned Santoro could do little but stammer. Santoro pulled herself together and started learning about Down syndrome. She and hus- band Joe got hooked up with the resources they would need for their firstborn son. At 5 weeks, Roman started working with a physical therapist. Today, he can run, jump and play like any other kid his age. So can Kathryn, even though the heart defects that often come with Down syndrome required surgery when she was 9 days old and again when she was 6 months old. She's now monitored by a cardiologist. Their progress would once be thought remarkable. Decades ago, parents delivering babies with what was then called "mongolian idiocy" were told their children essentially would be vegetables. Most left the hospital empty-handed, willingly or reluctantly, as the babies were handed over to institutions. Medical problems such as heart defects were rarely treated, and most people with Down died young. When parents started taking their children home and when children started getting medical care and physical therapy, things started to change. Today, a person with Down syndrome can expect to live to be about 56, up from 25 in 1983, according to the National Down Syndrome Society. About 350,000 people in the United States have Down syndrome, said Sarah Schleider, spokeswoman for the society. Most are mildly to moderately impaired, and many live independently, work and make friends, just like everyone else, Schleider said. Though the society does not take a position on abortion — "recognizing that abortion is legal in the United States and that our constituents represent diverse backgrounds and philosophies" — Schleider acknowledged that many in the Down syndrome community worry about the implications of prenatal testing. "It definitely is a concern, and we take an active stance to ensure that the public perception of Down syndrome has increased, and people know about all the wonderful things that people with Down are able to accomplish," Schleider said. Some parents groups across the country are doubling their efforts to tell doctors and expectant parents that having a child with Down may be challenging, but it has its own joys. Drenth and Santoro share that desire, but acknowledge that they are fortunate while others may not be. Their husbands are totally committed to raising their children, and they are financially secure enough to be able to stay home with their children. Their families and friends are supportive, and they also each have just two children, which allows them to dedicate enough time to therapy for Roman and Kathryn while still raising their siblings, Lucas and Nicholas. Single women, young women, poor couples and others may not be so lucky, Caplan said. "Talk to someone who has five or six kids, and they may not be able to devote the time and energy to helping their disabled child," he said. "It tends to be the people who are a little more economically and socially advantaged who we hear from. And we don't hear at all from the people who chose not to have the baby because there's no 'I-didn't- have-that-child-and-I-don't- regret-it' kind of organization." In addition, some people with Down syndrome are severely disabled, Caplan said, and require constant care their entire lives. Such decisions are also, of course, shaped by belief. A self-described "strong" Christian who met her husband, Justin, at their church, Drenth is opposed to abortion. When pregnant with Kathryn, she did- n't have any screening tests because, she said, the results would not have changed her mind. "God gives you exactly what you're supposed to get, so I have no problem with it. We'll figure it out," she recalled saying after being told of her baby girl's diagnosis. When pregnant with Nicholas, though, she did follow the advice of obstetrician Dr. Scott Dinesen, who recommended a diagnostic ultrasound so he could arrange for a heart specialist at the birth, if needed. In the end, it turned out that the chromosomal miscue that gave Kathryn Down syndrome was random. Nicholas, now 16 months, does not have the condition. Santoro, on the other hand, had all the prenatal tests and screens, since she was 36 when she got pregnant. None indicated any abnormalities, she said. What would she have done if they had turned up positive? "We would have gotten more information, but that's it. We were having this baby," said Santoro, who underwent in vitro fertilization to get pregnant with Roman in the first place. She understands the fear that might lead people facing the specter of a disabled child to terminate the pregnancy. But the thought of someone aborting a baby because it might have the same condition as her son makes Santoro squirm. "Who gets to decide what gets chosen next to eradicate?" For more information on the Bucks County Down Syndrome Interest Group, visit www.bcdsig.org. The group meets at 7 p.m. on the fourth Thursday of every month at Children's Village, near Doylestown Hospital. Sarah Larson can be reached at (215) 345-3187 or slarson@phlllyBurbt.com.