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When there is no good choice

/ Source: Self

It took Mary Vargas six months and repeated hormone shots to get pregnant with her second child. “We were so excited,” Vargas, 35, remembers about the day she learned the treatments had worked.

“We wanted this baby with every fiber of our beings.” In February 2005, her husband brought a video camera to record their sonogram at almost 19 weeks, because, Vargas says, “we wanted to appreciate every moment of this child’s life.” The technician revealed they were having another son. But partway through the exam, she fell silent.

Concerned and scared, Vargas’s husband turned off the camera.

The sonogram showed that Vargas’s uterus contained almost no amniotic fluid, the essential liquid that cushions a fetus and enables the uterus to expand, giving him room to grow and develop. Without enough fluid, over the course of the pregnancy a baby would be crushed by the weight of the mother’s organs.

The mother makes amniotic fluid until midway through the second trimester; afterward, it mostly comprises fetal urine. There was a chance that Vargas had a tear in her amniotic sac that would repair itself and that her son would start making the fluid on his own. But the more likely scenario was a condition called Potter’s syndrome, essentially a failure to develop working kidneys. Only time and more tests would give the couple absolute answers.

“Our doctor took great pains to be reassuring,” recalls Vargas, a disability-rights attorney in Maryland. “It seemed that he was being too kind for things to be OK.” Even after another doctor gave her son only a 7 percent to 9 percent chance of surviving, and only then with severe disabilities, Vargas held on to hope. “We wanted that little boy under any terms,” she remembers tearfully.

But she didn’t want him to suffer. She knew that if he had Potter’s syndrome, those were terms she could not live with. After more than two weeks of bed rest, consultations and tests, another doctor did an amnioinfusion, filling Vargas’s uterus with fluid to provide better pictures of the fetus. A technician held the sonogram wand to her belly, and the Vargases and their doctor watched the results projected onto a monitor near the ceiling.

“The doctor had his arms folded and just stared at the pictures,” Vargas says. “He was lost for words.”

What everyone saw above them that day was gruesome and heartbreaking. “The baby’s limbs were bent and broken, and he had facial deformities from being crushed,” Vargas says. Not only were his kidneys not functioning, but this had also prevented his lungs from developing.

Now nearly 22 weeks pregnant, Vargas had two choices: terminate immediately or wait, in which case she would miscarry at any point or spontaneously go into labor at as early as 28 weeks. If her son was still alive at his delivery, doctors warned, he would perish within a short time. And that death would likely be very painful for him. “As a parent, your job is to make sure your child doesn’t suffer unnecessarily,” she says. “He had no chance at life. What we had to think about was how he was going to die. It wasn’t about choice, because the option we wanted — to have our baby — was no longer available.”

Later-term abortions and the law

No woman wants to imagine ending an advanced pregnancy after her belly has begun to swell and she has felt her baby kicking with life. Thankfully, few women have to take this step.

Later-term abortions — those performed at 16 weeks and beyond — account for only 4.3 percent of the 1.21 million pregnancies ended in the United States each year, according to the Guttmacher Institute in New York City. These cases are often misunderstood, says Michael F. Greene, M.D., director of obstetrics at Massachusetts General Hospital in Boston. “Part of the strategy of [anti-abortion activists] is to demonize these women and make them into unsympathetic characters who view second-trimester abortion as a trivial decision,” Dr. Greene says. “I have never met a woman who didn’t agonize over this decision.”

In some cases, women seeking later abortions have irregular periods that prevented them from realizing they were pregnant; some become too ill or injured to safely carry to term; others would have aborted earlier but had to delay until they could save money for their care and the travel necessary to get it. But many times, say reproductive-rights activists, women have abortions at this late stage because tests have shown that the baby is not viable outside of the womb or will have debilitating, often fatal, health problems. “These are tragic occurrences,” says Nancy Keenan, president of NARAL Pro-Choice America, an advocacy group in Washington, D.C. “These are usually very wanted pregnancies.”

These tragedies are now at the center of the abortion debate. In April 2007, the U.S. Supreme Court upheld the constitutionality of the federal Partial-Birth Abortion Ban Act. In doing so, it banned for the first time certain methods of abortion, including intact dilation and extraction, a later-term procedure also known as D&X or intact D&E. Now, unless a physician can offer unequivocal proof that a patient would die without a D&X, the doctor risks being fined $250,000 and sent to prison for up to two years. D&X has always been a rare procedure, and there are other options for ending advanced pregnancies. Yet physicians argue that its criminalization is already threatening the quality of women’s health care and access to other kinds of abortions that remain legal — at least for now.

“We will see lots of copycat laws of the federal abortion ban, and the envelope will be pushed and expanded to include a longer list of banned procedures,” says Roger Evans, senior director for public policy, litigation and law at Planned Parenthood Federation of America in New York City.

Since the Supreme Court ruling, Louisiana and Utah have implemented bans on D&X procedures, allowing those states to impose their own penalties. (Louisiana allows doctors to be fined up to $100,000 and given “hard labor” jail terms of up to 10 years.) Eleven more states have introduced similar bills this year. “Even where state bans contain identical penalties to the federal law, they provide opportunities for state and local officials to investigate and prosecute alleged ‘violations’ — which can result in politically motivated witch hunts,” says Cathleen M. Mahoney, vice president and general counsel of the National Abortion Federation in Washington, D.C. The future for red-state providers may look something like the situation in Kansas, where an anti-abortion prosecutor and his allies have targeted clinics performing later-term abortions.

Thirty-six states prohibit almost all abortions after a baby is viable, but most don’t define when that is. Meanwhile, the new federal abortion ban and its state doppelgängers are written so broadly that doctors worry the penalties could apply to other procedures besides D&X, some performed as early as 13 weeks of pregnancy. The result is that patients and doctors can’t always be sure when it is legal to perform an abortion or what methods are allowed. “The vagaries of these laws mean that people who have provided second-trimester abortions in the past have become more cautious,” says Mark Nichols, M.D., professor of obstetrics and gynecology at Oregon Health & Science University in Portland. “Soon they may stop doing them entirely because of who is looking over their shoulder.”

The decision to terminate

For more than two weeks the Vargases had anguished while they waited for a definitive diagnosis. Now that they knew that their son, whom they named David, had no chance of surviving more than a short time outside the womb, they decided to terminate.

At first they considered an induction and delivery, which would give the Vargases a chance to hold him.

“But that didn’t seem like it was best for him,” Vargas says. “I can’t imagine that I would choose to be born into bright lights and alarms and not being able to breathe, even with my mother holding me.”

The doctor favored what’s called a standard dilation and evacuation (D&E), but felt the procedure needed to be done before 22 weeks of pregnancy in order to be safe for Vargas. Time was of the essence: “It was a Thursday, and we needed to find a doctor willing to come in on a Saturday because it would be too late for us if we waited until Monday,” Vargas says. A counselor in Vargas’s perinatologist's practice located a doctor, but that was only the first hurdle.

Vargas had been told her termination would cost between $4,000 and $12,000, depending on the procedure she and her doctors agreed on. She gets her insurance via her husband’s employer, the federal government, which has a long-standing policy forbidding employees from purchasing any health plan that covers abortion. Because she was paying out of pocket, she had to make a $1,000 down payment the night before her treatment started. “It felt like we were answering directly to George Bush, and that he was telling us what we were doing was wrong,” she says.

Vargas’s doctor first inserted seaweed sticks known as laminaria into her cervix to prompt it to dilate. The next day, she took misoprostol, a medication that encourages the cervix to dilate even more. Later, the doctor ended her pregnancy.

For any kind of later-term abortion, the details are graphic and difficult even to read about — so fair warning for what follows if you are squeamish. The standard D&E that Vargas underwent involves a physician taking the fetus from inside the uterus in parts. A D&X (aka intact D&E) entails using a pair of forceps to remove the fetus from the uterus intact until all that remains inside is the head, which is then drained to permit passage through the cervix. In essence, the federal ban permits the killing of the fetus inside the womb, but not immediately outside of it.

The nonmedical term partial-birth abortion, coined by the anti-abortion movement, grew out of the idea that the D&X procedure “most resembles infanticide because the baby’s body is outside the uterus already,” says Mailee Smith, a staff counsel for Americans United for Life, a pro-life law and policy group in Chicago. “In order to prevent the blurring of the lines between infanticide and partial-birth abortion, it’s necessary to ban partial-birth abortion,” she adds.

The Vargases, like other families, were intent on minimizing their son’s suffering. But the question of how to do that has also become medically and politically controversial. It’s unclear if or when a fetus is capable of feeling pain: In a 2005 study published in The Journal of the American Medical Association, researchers at the University of California at San Francisco found that, based on existing studies of how babies’ brains develop in utero, pain is unlikely to be experienced before around 29 or 30 weeks. Yet a proposed federal law would require doctors to warn women aborting at 20 weeks or after that their baby may feel pain and to offer anesthesia for the fetus; several states have also passed or proposed bills on the issue. Little or no data exists on whether attempts to provide fetal anesthesia would help the fetus or harm the mother, leading the UCSF researchers to write that it “should not be recommended or routinely offered for abortion because current experimental techniques provide unknown fetal benefit and may increase risks for women.”

The D&X technique is so uncommon that many doctors who perform second-trimester abortions, including Dr. Nichols and Dr. Greene, have never used it. Nevertheless, they worry that in an emergency, it would no longer be available to them. “The law makes no exception for a woman’s health, only if her life is at risk,” says Dr. Nichols, also the medical director of Planned Parenthood of Columbia/Willamette in Oregon. “If during a standard D&E a woman has lost a quart of blood and I consider her to be dying, and I perform a ‘partial-birth abortion’ to save her, I fear there will be an expert witness to testify that I intervened too soon.”

In this new, threatening climate, doctors don’t want to leave any opening for prosecutors. As a result, hospitals around the country have begun to require that all abortions after 20 weeks be preceded by lethal injection — when the fetus is killed in utero via a shot of digoxin or potassium chloride. The doctor typically injects the drug into the umbilical cord, amniotic fluid or fetal heart via a needle through the patient’s belly the day before the scheduled termination. These injections can be painful for the woman and increase her risk for infection and spontaneous delivery away from the clinic or hospital. “Nowhere else in medicine do doctors require a patient to go through an invasive procedure like this purely for legal reasons,” Dr. Nichols says. “As doctors we take an oath to do no harm, yet these injections — while the risk is low — are potentially harmful to the mother. And we make patients get them not to benefit them, but to protect ourselves from going to jail. I’m forced to choose my well-being over that of my patients.”

A controversial doctor

Audrey, a public affairs officer from northern Virginia, was at her 28-week checkup when her obstetrician told her that her belly looked bigger than it should. Then 33, Audrey (who asked SELF not to publish her full name because she and her husband work in government) hadn’t had an amniocentesis, but her other screenings had come back normal. She had been diligent in taking care of herself and her first child, forgoing sushi, diet soda and even sugarless gum. Until that point, she says, “mine was a regular, healthy pregnancy.”

A high-resolution sonogram revealed her son had a vein of Galen malformation, a defect that interferes with drainage from the brain and swells it with fluid — the reason she was carrying so large. She was told her baby would die inside of her or immediately after he was born. “My baby was alive and kicking, and the thought of waiting for him to die in utero was unimaginable,” Audrey says.

Part of the excitement of having a baby is the public announcement a swollen belly makes, inviting perfect strangers to ask detailed personal questions. Audrey couldn’t bear the thought of the parking attendant inquiring about the sex of the child, or the dry cleaner wondering if she had picked out a name. “I had read to this baby inside of me, and I had sung to it,” Audrey says. “Now I was carrying a pregnancy that was a deathwatch.”

She asked her obstetricians when she could terminate. The head of the practice replied, “We call that murder.” Another doctor in the practice was willing to induce, but, Audrey says, warned her “she couldn’t prevent a nurse from running into the OR with life support. The idea of holding a baby as its organs failed — we couldn’t think of anything worse.”

Finally, a specialist Audrey had consulted handed her a piece of paper with three words on it: “Dr. Tiller. Wichita.”

George Tiller, M.D., is the medical director of Women’s Health Care Services in Wichita, Kansas, and one of only a handful of physicians nationwide who perform late-second- and third-trimester terminations. As a result, he has become a last-chance abortion doctor for women who can’t find a provider in their home state. And his clinic, an anonymous, windowless brick building along a major thoroughfare in the southeastern part of Wichita, has become ground zero in the battle over later-term abortions.

In 2006, Republican Phill Kline, then Kansas attorney general, filed misdemeanor charges against the doctor, accusing him of performing 15 illegal postviability abortions; among other charges, Kline alleged that Dr. Tiller did not correctly determine the viability of the pregnancies or if continuing them was a threat to both the physical and mental health of the mother (as is required by state law). Voters ousted Kline in an election driven by abortion politics; his replacement, Democrat Paul Morrison, did not pursue the charges against Dr. Tiller, saying that they were based “on [Kline's] personal political beliefs and not the law as it was written.”

But Dr. Tiller’s troubles are not over. Kansas is one of the few states where citizens can petition to convene a grand jury, and anti-abortion activists in Wichita have done so with hopes of indicting Dr. Tiller on the same issues Morrison set aside last year. Meanwhile, Morrison filed 19 new charges: Kansas law requires that two doctors independently make the determination for abortion, and Dr. Tiller is charged with having financial ties with another doctor who referred him patients.

Morrison has since been replaced himself. But the charges are still pending, says Lee Thompson, Dr. Tiller’s attorney. Thompson argues that the two-doctor requirement is unconstitutional, placing an undue burden on patients; he expects the case to be decided this fall at the earliest. “Thankfully, we’re now dealing with a traditional law enforcement office, which is a pleasant change from the fundamentalist, religiously motivated politics of Mr. Kline,” he says.

Kline, for his part, has gone on to be appointed the district attorney for Johnson County, south of Kansas City and 175 miles from Wichita. And he has continued his crusade, filing 23 felony and 84 misdemeanor charges against Comprehensive Health of Planned Parenthood of Kansas and Mid-Missouri in part for performing what he alleges were unlawful second-trimester abortions. A citizen grand jury in that area — again convened at the request of anti-abortion activists — spent three months investigating Planned Parenthood but cleared it of those charges in March.

To Audrey and her husband, the controversial Dr. Tiller and his staff became a godsend. Within a few days of getting the doctor’s name, they flew to Kansas. “They were amazing to us. We went from being called murderers to being completely cared for,” Audrey says, adding that clinic staffers helped arrange counseling for the couple’s mothers. She also turned to a local rabbi for spiritual counseling.

Audrey’s son died via lethal injection administered by one of Dr. Tiller’s physician colleagues; two days later, labor was induced. Although she didn’t expect to want to, Audrey held his lifeless body after he was born. Despite the swelling in his brain, “he was a perfect, beautiful little boy,” she says. “I was worried he would be grotesque and that he wasn’t made it harder. But I knew he wasn’t OK inside.” She has since had two more sons and regularly brings her boys to visit the grave of her first child. “I live with this decision every day,” she says. “But I have never regretted it.”

An alternative: perinatal hospice

Directly across a parking lot from Dr. Tiller’s clinic is a facility with a different take on what to do about ill-fated pregnancies. Choices Medical Clinic, a privately funded nonprofit, opened in 1999 and is one of as many as 2,500 “crisis pregnancy centers” nationwide that exist to persuade pregnant women to avoid abortion. Choices was one of the first centers to offer perinatal hospice: end-of-life services for fetuses akin to the standard hospice care available to the sick and the elderly.

The facility doesn’t provide primary medical care; deliveries or inductions are done at local hospitals. But women who enlist its hospice services are invited to have free sonograms every day of their doomed pregnancy and, if they find it a comfort, can have free professional pictures taken of them and their dead or dying children after they are born. “Our job is to start from the womb to the tomb,” says Scott Stringfield, M.D., a family physician in Wichita and medical director of Choices. “We try to comfort women and facilitate greater closeness to their child.”

Kim Ortmeier, a 35-year-old stay-at-home mom, first learned about perinatal hospice from her obstetrician. She was 16 weeks pregnant with her second child and living in Wichita in December 2006 when routine testing revealed the fetus had holoprosencephaly, a condition in which the brain doesn’t develop properly. A perinatologist told Ortmeier and her husband, Jeff, that their baby could not survive for long outside the womb; she could be stillborn or miscarried at any time. “Abortion was never a consideration,” says Ortmeier, a devout Catholic. “We told our doctor we’d do whatever we could to give her the best possible life she could have.”

When her obstetrician recommended they contact Choices, Ortmeier hesitated. “Because the services were free I wondered if they were quality,” she says. But she decided to check it out anyway. She started working with the center in her 28th week of pregnancy, when delivery seemed imminent. She had two sonograms taken of the baby, a girl they named Madeline, and made plans for both her birth and her funeral. “They offered me constant support in an environment that was very pro-life,” she says. The staff’s positive approach cheered her: “They would be happy when they saw my baby, not all gloom and doom.”

An alternative for women

Byron C. Calhoun, M.D., medical director for the National Institute of Family and Life Advocates in Fredicksburg, Virginia, helped conceive the idea for perinatal hospice. In hopes that women facing pregnancy with an adverse diagnosis will choose to carry to term, Dr. Calhoun determined to make spending time with those children — before and after birth — a more compassionate experience. Today some 60 U.S. hospitals, hospices and crisis pregnancy clinics offer perinatal hospice services; in Minnesota, women seeking to abort fetuses with fatal anomalies are required by law to be informed about hospice as an alternative. “Women appreciate the grieving process and being able to spend time with their babies,” says Dr. Calhoun, vice chair of obstetrics and gynecology at West Virginia University School of Medicine in Charleston. “Perinatal hospice gives women an alternative that is a better choice than abortion.”

Ortmeier took her pregnancy to 37 weeks before her doctors advised her to have an induction: Madeline's head had grown so large with fluid that doctors worried she couldn’t be delivered full-term. Ortmeier had arranged for her family to travel from Missouri, Nebraska and Wisconsin for the birth, and for her priest to perform a baptism. And she had a photographer on hand to take pictures of Madeline during the 30 minutes she lived and for several hours after she died.

“We kept her until the nurses said they had to take her,” Ortmeier says.

Those pictures now sit in the living room of the Ortmeiers’ new home in Naperville, Illinois, alongside other family photographs. “It was a very hard pregnancy,” Ortmeier says. “But holding my baby was the biggest reward I could ever have had. I would do it again, although I pray I don’t have to.”

Ortmeier is convinced that hospice was the best option for her family. But having only that choice could be devastating to other women, says Paul D. Blumenthal, M.D., professor of obstetrics and gynecology at Stanford School of Medicine in California. “Forcing a woman to carry a fetus with a lethal anomaly can be tremendously psychologically traumatic,” he says.

The kicks and rolls Ortmeier enjoyed during her doomed pregnancy were, for Audrey, an absolute nightmare. Ortmeier welcomed strangers’ interest in her growing belly, whereas Audrey shrank from it.

“Every woman should be offered the opportunity to choose what is best for her,” Dr. Nichols says. “I have cared for many women who have chosen not to terminate and to give birth and be with their baby when it died. But I would hate to have the situation where women had no choice but to do that.”