Too Much to Carry? (original) (raw)

Too Much to Carry?
Women pregnant with multiple fetuses face one of the toughest choices imaginable: Risk the health of all, or take the lives of some

By Liza Mundy
Sunday, May 20, 2007

THE MEDICAL PRACTICE OF MARK EVANS IS LOCATED ON THE GROUND FLOOR OF A MANHATTAN TOWNHOUSE, nestled discreetly among the restaurants and nail salons of the Upper East Side. To be admitted, patients must ring a buzzer and wait for the door to open before taking a seat inside the crowded waiting room.

Down the hall in a tiny examining room one morning, a sonographer named Rachel Greenbaum was sitting on a high stool next to an ultrasound machine. "Do you want to see the screen?" she asked one of Evans's patients, who was lying unhappily on an examining table. The woman, pale-skinned, fine-featured, tall, in her 30s, was wearing a hospital gown. Beside the woman was her husband, sitting in a chair, holding his wife's hand. He too was pale, and, like his wife, he looked miserable. "Yes, I'd like to see them," the woman on the table said firmly.

"I'll just take a few pictures, and I'll show them to you," Greenbaum said.

"Them" referred to the three fetuses in the woman's belly, a long sought pregnancy achieved by in vitro fertilization. The woman and her husband were about to turn their triplets into twins in a procedure known as selective reduction.

Selective reduction is one of the most unpleasant facts of fertility medicine, which has helped hundreds of thousands of couples have children but has also produced a sharp rise in high-risk multiple pregnancies. There is no way to know how many pregnancies achieved by fertility treatment start out as triplets or quadruplets and are quietly reduced to something more manageable. The U.S. Centers for Disease Control and Prevention, which publishes an annual report on fertility clinic outcomes, does not include selective-reduction figures because of the reluctance to report them.

The industry doesn't publish them, either. "This is a very sensitive topic," says David Grainger, president of the Society for Assisted Reproductive Technology, the membership group for IVF clinics. It's sensitive, personally, for patients, but also politically, for doctors.

Mark Evans is one of the few doctors in the country who not only performs reductions but also is willing to discuss all qualms, ethics, issues, outcomes. Evans, who describes himself as an obstetrician-geneticist, is a pioneer in fetal therapy. Using stem-cell transplants, he developed the first in-utero correction of SCID, a genetic disorder that severely compromises the immune system. He has also pioneered fetal surgeries, including bladder shunts for fetuses with urological obstructions. The goal of his practice is the delivery of a healthy baby. In some cases, this can be achieved by treating a fetus in utero. In some cases, it is achieved by sacrificing a fetus in utero.

In 2005, I spent two days with Evans, where the first reduction patient was the distressed woman who had become pregnant with triplets. Triplets pregnancies are far riskier than most people realize: Carrying three babies to term would more than double the woman's risk of developing the most severe diseases of pregnancy, such as preeclampsia. The average triplet is born two months premature, significantly raising the risk of disabilities such as cerebral palsy and of lifelong damage to the infant's lungs, eyes, brain and other organs. By reducing the pregnancy to twins, the woman and her husband would decrease the risk of severe prematurity. And the risk of losing her entire pregnancy would fall from 15 percent to 4 percent.

As she was having her sonogram, the patient told Greenbaum how she'd ended up there. After suffering a series of miscarriages, she and her husband had IVF performed, producing three embryos. To maximize the chances of a successful pregnancy, all three embryos were put into her uterus. All three took.

"Triplets," Greenbaum said.

"So they tell me," the woman said, her voice hollow.

And, sure enough, on Greenbaum's screen were three little honeycombed chambers with three fetuses growing in them. The fetuses were moving and waving their limbs; even at this point, approaching 12 weeks of gestation, they were clearly human, at that big-headed-could-be-an-alien-but-definitely-not-a-kitten stage of development. Evans has found this to be the best window of time in which to perform a reduction. Waiting that long provides time to see whether the pregnancy might reduce itself naturally through miscarriage, and lets the fetuses develop to the point where genetic testing can be done to see which are chromosomally normal.

Greenbaum periodically magnified one fetus and brought it into focus. She would then freeze the frame and do two things: measure the fetuses to assess their growth and see if any one is lagging; and take a "nuchal translucency," measuring the fluid behind each fetus's neck. An excess of nuchal fluid suggests a possible problem: Down syndrome, for example. They are all measuring at 11 weeks and 6 days," Greenbaum said.

"That's right," the woman said, wonderingly. "It is 12 weeks tomorrow."

So far, there was nothing anomalous about any of the fetuses. Greenbaum turned the screen toward the patient. "That's the little heartbeat," she said, pointing to the area where a tiny organ was clearly pulsing. "And there are the little hands. There's the head. The body."

"Oh, my God, I can really see it!" the patient cried. "Oh, my God! I can see the fingers!"

"Okay!" she said, abruptly, gesturing for the screen to be turned away. She began sobbing. There were no tissues in the room, so her husband gave her a paper towel, which she crumpled to her face. The patient spent the rest of the procedure with her hospital gown over her face, so she would not see any more of what was happening.

WHAT WAS HAPPENING WAS DAY ONE OF A TWO-DAY PROCESS, in which one of the woman's three fetuses would be eliminated through an injection of potassium chloride, which stops the fetal heart. This process was developed by a select group of doctors including Evans, a large man with the occasional impatience of someone smarter than most of the people around him.

Evans, now 54, was in high school when he became interested in genetics, and he soon realized that the action, genetic therapy-wise, was going to be in prenatal. He became known as an adept practitioner of fetal therapy -- somebody with the know-how and the nerve to treat a tiny creature growing deep and invisible to the naked eye, within a vulnerable womb.

In 1984, Evans says, he was contacted by an ob-gyn who had a patient pregnant with quadruplets from fertility treatment. The patient, not even 5 feet tall, was too small to carry four babies to term. The doctor saw no solution but to abort them. The woman, unwilling to sacrifice a pregnancy she had worked so hard for, asked whether it might be possible to do a "half-abortion." The way abortion is normally performed, through vacuum suction, this would not be possible, but the doctor called Evans to see if there might be another way.

"I don't know if it's possible, but I know how I would do it," Evans replied. The woman was sent to Evans, who, as he puts it, stabbed two of the fetuses with a needle. "Not an elegant technique," he acknowledges. But it worked. "I reduced four to two," he says, "and the two are in college right now."

The technique has been refined. Today, Evans performs CVS, chorionic villus sampling, on his reduction patients. In CVS, a small portion of the placenta, which shares the chromosomes of the fetus, is drawn into a hollow needle. The tissue is shipped to a lab for an overnight test for genetic birth defects. The same test can also determine the gender of each fetus. Evans also studies the position of each fetus. The point is to seek a rationale for which one, or ones, to eliminate.

Most of Evans's practice does not involve reduction. He does genetic counseling and testing of pregnant women, and in most cases gets to deliver the news that their baby is blessedly normal. The days I spent with him, Evans had three sets of patients coming in for reduction. The first was the unhappy couple, who left the office so shaken that they would not allow me to watch their reduction the following day. The second was a woman who had flown in from Puerto Rico and who arrived for her ultrasound alone, clearly terrified and needle-shy. She shrieked throughout the CVS procedure, making the tense and difficult process of aspirating three incipient placentas even more tense and difficult.

His third couple was two women. One was a physician whose practice involves young children with severe birth defects. The other had a job that also brought her into contact with children in difficulty. Like the other patients seeing Evans for reductions, the women were gracious enough to let me sit in, but asked that identifying details not be revealed. For the purposes of this story, I'll call them Jane and Emma.

Emma was the one who was pregnant, via a sperm donor. She had suffered a miscarriage after her first artificial insemination. But the next time, she got pregnant with quadruplets. "We went from famine to feast," said Jane, explaining that they felt that carrying four babies to term would be far too risky. These women knew all too well what serious disability does to a child and to a family. Evans outlined what would happen and reviewed the criteria for deciding which to reduce: chromosomal abnormalities, fetal position, professional instincts. "And then, if absolutely nothing else matters, and if everything else is equal . . ."

"Selection for sex," finished Jane.

"If there's a gender difference, we'll talk about that," he acknowledged.

"I used to be totally not willing to talk about gender," elaborated Evans, who has pieced together his own ethics during more than 20 years of practice. At the outset, he worked with a bioethicist to develop guiding principles. For years, he says, the majority of sex-selection requests came from Asian and Indian parents, who tended to want to keep the boys. That he would not do. Increasingly, however, what people want is the Holy Grail of the modern two-child family: one boy and one girl. He finds that morally acceptable.

Emma positioned herself on the table for her sonogram, while Jane scrutinized the four fetuses on the screen. "They are all tucked in really nicely into their little nests," she said, fascinated. "The most I've ever looked at in utero is two."

Greenbaum took the measurements. The growth of all four babies was fine. The nuchal folds were fine. Evans studied the way the fetuses -- labeled A, B, C and D -- were positioned and quickly made one decision. "I want to test C," he says, "because I'm trying to keep it." Located in the most interior spot, C would be the hardest to get at. To eliminate C, he would almost certainly have to go through B, cutting off any other options. But to justify keeping it, he needed to make sure C was normal.

The women were planning to eliminate two of the fetuses and keep two, which would decrease their chances of losing the entire pregnancy from 25 percent if they did nothing to 7 percent if they reduced to twins. And if they fell into the 7 percent who miscarry, this would be "despite the reduction, not because of it," Evans said. There may be some risk from the procedure itself. In 20-odd years, he estimates, a "handful" of pregnancies have miscarried shortly after his performing the reduction, and with a less experienced practitioner, the risk of procedure-caused miscarriage is higher, probably just under 1 percent. But based on the statistics, he argues, "it's almost always safer to do this than not to do it."

Jane wanted to safeguard Emma's pregnancy but was feeling some ethical qualms. "It's killing me that we're going to do this," Jane said. "I never thought I would feel that. I'm the most pro-choice person. I'm vehemently pro-choice."

When Evans was finished, Emma got up from the table, and the women left for the day. Tomorrow they would be called, like the others, once their test results were back.

MIDMORNING THE NEXT DAY, THE WOMAN FROM PUERTO RICO ENTERED THE DOCTOR'S COUNSELING ROOM, this time accompanied by her mother. Evans told the patient that all three of her fetuses were normal. The patient let out an elated squeal. This, said Evans later, is unusual: Often couples are relieved if there is something wrong with one fetus, since this makes the decision to reduce easier to bear. "We can leave you with two," he said.

"Do you know the sex?" the patient's mother asked.

"All are girls," Evans said, in front of him a sheet on which he had written the sex chromosomes. A: XX, B: XX, C: XX. "Two girls! That's what she wanted!" the mother said.

"Dos niñas!" said the patient, who ran out of the counseling room and into the waiting room, where she summoned her grandmother and another elderly woman, and suddenly there were four women in the room looking ecstatically at Evans, who explained what would happen next. Because there were no abnormalities and no sex differences, he said, he would go to the "next level of subtlety" in determining which to reduce.

"It's up to you," the mother of the patient said.

"It can't be three?" said the patient, wistfully.

Evans reviewed the loss rates for triplets. The patient's mother was clearly in favor of reduction. They had been over this before, she said, with the IVF doctor in Puerto Rico. "The risk would be too great," she said. "Sometimes you have to do unpleasant things to have a family."

"Very unpleasant," said the patient, who went into the examining room. Evans opened a pack of instruments; a square napkin with a hole in the center went over the patient's belly, which he swabbed with antiseptic.

"I'm a coward," the patient said, bracing herself. Evans and Greenbaum, wearing surgical gloves, inspected the ultrasound. Evans decided, based on location, to go for fetus C, which was the most accessible.

Selective reduction is actually quicker than CVS. It takes a smaller needle to inject a chemical down than it does to draw a placenta piece up. Even so, the procedure demanded great skill, dexterity and resolve from Evans and Greenbaum. Destroying a fetus requires three hands: one to hold the ultrasound transducer on the patient's belly; one to inject the needle and maneuver it into a position near the fetal heart; another to draw out the metal rod at the core of the needle and replace it with the vial of potassium chloride. Evans, who is left-handed, did all these things at various times, tools close together as he worked over the patient's belly. At points, Greenbaum assisted by holding the vial until he needed it; holding the transducer; and coaching him into position, watching on the screen and issuing directions. Evans worked for a while trying to get the needle into the right spot.

"I'm not in," he said at one point, tensely. Then he pinned C with the needle, and pushed the plunger to release the chemical. The fetus, which had been undulating and waving, went still. It would remain in the womb, while the other fetuses grew and developed.

"Let's check the other two," Evans said, and they moved the transducer to see the other two fetuses, still there, still waving, two hearts beating, unaware of what had just happened to the sibling they would never have. "Do you want to see your twins?" he asked the patient.

"I don't want to see the other one," the woman said quickly.

"I chose my words carefully," Evans told her. "Do you want to see your two daughters?"

And so he showed her the two daughters, babies so important to this family that three generations of women had made the flight from San Juan to New York to ensure the safety of the pregnancy. Contemplating her two living fetuses, the woman's face displayed an explosion of emotion. Her face went intensely red. Then Greenbaum adjusted the machine so that it showed, suddenly, a vivid 3-D image of the twin fetuses, an ultrasound image so rich and detailed that it looked like a digital photograph taken from deep within the belly. There were the two faces, the two fontanels, the two nasal ridges, the eight limbs, everything.

"That's the heartbeat, the hands," said Evans to the patient, who was gazing, rapt, at the ultrasound.

"They're beautiful!" said the woman's mother, who had been summoned into the room.

"You can see the arm going up and down," Greenbaum said, pointing to one. "This one is a busy baby!"

"A busy baby!" joyfully repeated the patient's mother.

AFTER THE PROCEDURE, I ASKED EVANS IF WHAT HE HAD JUST DONE WAS AN ABORTION. "Technically, this is not an abortion, a procedure that kills the fetus and empties the uterus," he said. "The bottom line is, abortion ends the pregnancy. We don't end the pregnancy. We very specifically don't end the pregnancy."

It's not a distinction antiabortion groups necessarily make. "We're opposed to any taking of life of the human person after they're conceived," said Wanda Franz, president of the National Right to Life Committee, which opposes selective reduction, as it does abortion, unless the life of the mother is clearly at risk. Franz argues that most multiple pregnancies, including high-order ones, should be carried to term, with the fetuses treated as patients. "Occasionally, you have tragedies, and the babies don't survive, but those are the kind of tragedies that can't be prevented."

While Evans and I chatted, the sonographer, Rachel Greenbaum, was eating a salad. A new mother herself, she was pumping breast milk between procedures. She had been recently hired by Evans and, just back from maternity leave, was trying to get used to this part of her job.

"I don't particularly like doing the reductions," she said. "I find it very stressful. With every patient, I think, If it was me, what would I do? Some of these people tried to get pregnant for the past five years and prayed to God. And now that they are pregnant, they are telling God: You gave me too many. I sometimes feel like we are playing God, and that is very emotionally stressful."

Greenbaum, who is Jewish, takes seriously her religion's admonition not to take a life. What sustains her, she said, is the knowledge that the reductions she has been involved with were done for sound medical reasons. She would never, she said, work at an abortion clinic. "This is as close as I would get," she said. "Here, it is completely different. You are helping people have healthy babies."

Still, she says: "It's a very hard procedure, because the baby is moving, and you are chasing it. That is what is very emotional -- when the baby is moving and you are chasing it.

"Do you still feel emotional?" she asked Evans.

"I've come to look at it as: The finished product has a much better chance of surviving," replied Evans, who had been following the conversation intently. "Look, you never want to dehumanize it, because then you get cavalier. You have to keep the big picture in mind. We're not losing one. We're saving some."

When he began performing reductions 20 years ago, about 75 percent of his patients had gotten pregnant using fertility drugs alone, which often cause a woman to ovulate many eggs at once, and can result in extremely high-order multiples. Back then, he estimates, about 40 to 45 percent were pregnant with quads or higher; the same percentage were carrying triplets; and 10 percent were twin pregnancies in which one fetus had a serious problem. But things have changed. Now, 75 percent of his patients have gotten pregnant through IVF, a more controlled form of fertility treatment, and the size of the pregnancies has gone down. Now it's 5 to 10 percent very high-order multiples, 20 percent quads, 60 percent triplets, and about 10 to 15 percent twins.

When he was working to establish bioethical principles, Evans decided that he would not reduce a normal twin pregnancy. He would take somebody from three to two, but he would not take somebody from two to one. "The rationale we used was: One, every OB knows how to take care of twins, and two, the outcome is not as good as with singletons, but good enough. And number three, all these were fertility patients, and if we could get them to twins, that was that much closer to their family ideal. And four, we didn't know what the risk might be of damaging one of the fetuses by the procedure. Because of all of the above, it didn't feel ethical to go ahead and do that."

But Evans's thinking has changed. He is willing now to reduce two to one, and he does so. Not often, but the incidence is increasing. There are now data showing that reducing one twin does not affect the physical well-being of the twin who remains. Plus, many of his patients are women in their late 30s and early 40s, some married for the second time. Both partners may already have children, and what they want is one child together. And for a woman reducing a twin to a singleton, the pregnancy loss rate drops from 8 percent to 4 percent.

Evans has written articles arguing that it is ethical to reduce a twin pregnancy. After all, he said, if it's okay to reduce from one to none -- that is, if you support abortion rights -- then two to one should be okay, too. The idea is still controversial. "Twenty years ago, the ethical debate was with triplets. But now, as far as I'm concerned, there is no doubt about triplets, and the ethical debate has moved to twins."

And it is a debate. At the same time that Evans and others have been publicizing the data about the risks of gestating twins, other specialists have been showing women how they can take care of themselves to enhance their chances of carrying a multiple pregnancy to term or close to term. Among these is the nutritionist Barbara Luke, who has published books on successful gestation of multiple pregnancies, pointing out, among other things, that eating lots of protein helps the babies grow. Luke also published a 2004 article in the journal Fertility and Sterility showing that babies who started out as high-order multiples and were reduced to twins did not do as well as babies who started out as twins. The implication was that reduction may be bad for a pregnancy. This argument drives Evans -- and some of his colleagues -- nuts. They believe it's not fair to compare reduced twins to twins who started out as twins.

"Reduction is not bad for you," Evans says. "Starting out as quints is bad for you."

The long-term psychological consequences of reduction are still little understood. According to Isaac Blickstein, one of the world's experts on multifetal pregnancies, the studies that have been done suggest that the aftereffects of selective reduction are different from those of abortion. In general, parents feel better after the reduction is over. But grief can return, postpartum, as parents contemplate the babies they have, and think about the one, or ones, they lost. One study found that one-third of women who underwent selective reduction reported persistent depression a year later. At two years, most were feeling better. But, Blickstein notes, "psychoanalytic interviews with women who underwent [selective reduction] describe severe bereavement reactions including ambivalence, guilt, and a sense of narcissistic injury, all of which increased the complexity of their attachment to the remaining babies."

"Complexity of their attachment to the remaining babies" seems an apt way to put it. I encountered this one day when I was interviewing a mother who had reduced triplets to twins. "In some ways, the selective reduction becomes harder to deal with after the babies are born," the mother said. "They are babies with personalities, and you become attached to them, and you think: I could have ended up with one of these being gone, and the one that is gone could have been one of these."

"Now that I know my two daughters, looking at them, I think: It could have been you," she continued. "You terminated an embryo that could have turned into a baby you would love as much as the ones that you have, and that's hard."

THE TEST RESULTS FOR JANE AND EMMA STACKED UP LIKE THIS: A: XX, B: not tested, C: XY, D: XX. Two girls, one boy, one unknown. The known ones all normal. And so, for this last reduction procedure of the day, one decision had been made. Evans would reduce B, which was most accessible. As for the other one, he told the women they could have two girls -- that is, he could keep A and D -- or they could have a boy and a girl, in which case he would keep C and one of the girls. "If you want one of each, I'll keep one of each," Evans told them.

They wanted one of each. "I have mixed feelings about it, but I think boys and their mother have a very special relationship," said Jane, who alluded to what she perceived as the difficulty of raising adolescent girls. And with that, she and Emma had done it: They had selected for sex. They had made their choice not on the now unacceptable idea that boys are superior to girls but according to the notion that boys and their mothers may have easier, less tempestuous relationships.

Now Emma was on the table, and everybody was looking at four fetuses on the sonogram. The screen had been turned so that even Emma could see it. Evans decided that in addition to B, he would eliminate D, because of its position, farthest from the cervix, and most accessible after B. Just now, on the sonogram, D happened to be visible, moving and waving. "D is really active. That's what I hate to see," said Jane, who had woken up in the middle of the night worried about the "karma of what we are doing."

Evans prepared two syringes, swabbed Emma with antiseptic, put the square-holed napkin on her stomach. Then he plunged one of the needles into Emma's belly and began to work his way into position. He injected the potassium chloride, and B, the first fetus to go, went still.

"There's no activity there," he said, scrutinizing the screen. B was lying lengthwise in its little honeycomb chamber, no longer there and yet still there. It was impossible not to find the sight affecting. Here was a life that one minute was going to happen and now, because of its location, wasn't. One minute, B was a fetus with a future stretching out before it: childhood, college, children, grandchildren, maybe. The next minute, that future had been deleted.

Evans plunged the second needle into Emma's belly. "See the tip?" he said, showing the women where the tip of the needle was visible on the ultrasound screen. Even I could see it: a white spot hovering near the heart. D was moving. Evans started injecting. He went very slowly. "If you inject too fast, you blow the kid off your needle," he explained.

After Evans was finished injecting, D moved for a few seconds, then went still. Now, as we watched, there was something called the effusion: a little puff. "When I see that effusion, I know it's done," Evans said, taking "one last look at D before I come out," to make sure D was gone.

"Want to see your twins?" he asked the women, who did. On the ultrasound, he showed them the living fetuses, moving vigorously in their sacs. The women thanked him profusely. "Thank God there are people like you," Jane said.

"I'm sorry we had to meet under these conditions," Evans said.

Six months later -- I learned, from an e-mail the women sent -- Emma went into labor. The boy and girl were born vaginally, both healthy, both immediately and deeply cherished. The women e-mailed photos of both of them, nestled together on a blanket. "We could not be happier," they wrote.

During the course of the pregnancy, they had been able to see traces of the two reduced fetuses in the ultrasounds; Jane said that she felt it was important to own up to what they had done. After the birth, Jane inspected the placenta for the remains of the reduced two, which were visible in the placental tissue. She said "goodbye to the two that we were unable to carry," Emma wrote me in an e-mail, "which I know was very helpful to her."

Liza Mundy is a staff writer for the Magazine. This is excerpted from her new book, Everything Conceivable: How Assisted Reproduction Is Changing Men, Women, and the World, published by Alfred A. Knopf. She can be reached at mundyl@washpost.com. She will be fielding questions and comments about this article Monday at 1 p.m.