One and the Same (15 page)

“The average couple doesn't know what they're getting into,” says John Wood, who lives in a small Minnesota town with his wife and two-year-old twin boys, one of whom has cerebral palsy. Since Wood happens to be a family physician himself, he's embarrassed that even he knew so little about the risks. “As a doctor, I've had to tell many people bad news, but it was quite another thing to hear it.” Wood can only watch as his son Ben enjoys the normal childhood that his twin, Peter, never will. “Peter is just beginning to crawl,” Wood says. “Meanwhile, Benjamin is running.”

Dr. Wood pointed me to a sobering 2005 University of Florida study, which found that multiples are at higher risk than single babies for developing twenty-three of forty birth defects affecting the brain, heart, bladder, and liver. Though the frequency of handicapped multiples is still relatively small—about 3.5 percent, compared to 2.5 percent of singletons—the Florida researchers say the impact is colossal. “It can be life-altering,” said one coauthor, Jeffrey Roth, in his university's newsletter. “For the affected family, it doesn't matter that what has happened to them is a rare event.” Dr. Yiwei Tang, one of the study's lead researchers, said prospective mothers should be warned: “In offering these options to women, full disclosure of an increased risk of birth defects should be made.”

Ricki and Steve remember being nudged by their fertility physicians to transfer as many embryos as possible. “They were pushing ICSI,” Ricki recalls, referring to intracytoplasmic sperm injection, when doctors actually inject a sperm into the egg by hand before inserting it. “We didn't want to do that because we felt that was too technological,”
Ricki said. When she opted for IVF (where the egg and sperm are merely combined in a dish and left to fertilize or not), the doctors made her feel like she'd wimped out. “On the day of the transfer,” she recalls, “the doctor said, ‘There are three embryos left alive. Two look okay; one doesn't look that good. We would have had more to choose from if you had done the ICSI.' He said, ‘So we're going to put all three in,' and he left the room. There was never any talk ahead of time about what we'd want to do if there were several embryos to transfer, about the odds and risks of twins or triplets; there was no conversation like that.”

Steve adds, “At the point of transfer, the tilt in the conversation was very much that ‘If you're not really serious about trying this, why are you even wasting everyone's time and resources?' It was almost implied that if they didn't implant the maximum number of embryos, then there was basically no chance we were going to have any children at all.”

“I do think there are some doctors who are out of control,” Grifo allows, “but often it's because their pregnancy rates aren't so good, so they're trying to make up for their suboptimal pregnancy rates. And sometimes they're trying to make up for their patient who has a really poor chance, so they take the damn-the-torpedoes approach and put three embryos back three times, and if that fails, they put four embryos back, and they end up with triplets. It's all well-meaning, but it's sometimes a mistake. There are things you can do to remedy that, like reduction (aborting one fetus) to reduce the risk of the high-order multiples, but that's not risk-free, either: You could lose the whole pregnancy.”

Dr. Isaac Blickstein of Hebrew University, the rumpled, affable but blunt OB-GYN I met at the International Twins Conference in Belgium, is widely considered to be one of the leading experts on multiple births. He is unabashedly exasperated that the hazards of aggressive fertility procedures are still underplayed. He strikes me as a testy Paul
Revere, riding to alert infertile patients:
Be careful what you wish for
. “Usually you just see the happy stories,” he told me. “You don't hear stories about handicapped twins, twins who had difficulties in life.”

I ask Dr. Keith about the tantalizing promise of
People
magazine covers with celebrity moms holding rosy, healthy pairs. “What you don't see on those magazine covers,” Keith replies, “is those multiples who are still in strollers at the age of ten.”

The International Twins Conference happens every three years and draws every major researcher, scientist, and physician in the field. Inexplicably, it gets scant American press, but the collective expertise in one place is striking. I attended the June 2007 assembly in Ghent, Belgium. A charming medieval city one hour from Brussels, it is built around a picturesque canal. One presenter after another drove home gloomy statistics about multiple births. More than any other message at the three-day conference, what came through like a drumbeat was one consensus:
We need to stop this locomotive
.

One of my Ghent evenings was spent dining with Drs. Keith, Blickstein, and Blickstein's Israeli colleague, Liora Baor, who has a warm aspect and a thick Israeli accent. A social worker and professor at Bar-Ilan University, Boar specializes in counseling parents of twins and twins themselves. She was drawn to her specialty after having a set of her own—fraternal boys (nineteen years old at the time we meet), who, she says, are each other's “best friends, though they can fight until there's blood.”

Restaurant Keizershof is a formal café overlooking the Korenlei Canal, which carries sight-seeing boats under arched stone bridges. Blickstein orders a local beer and excuses himself to go have a smoke. As he grabs his Marlboros, I notice he has scrawled four capital letters on the pack: “T.I.M.E.” He says it stands for one of two things: “This is my end” or “This is my energy,” depending how you look at it.

Baor takes a long time to order because she's allergic to gluten. She proffers a laminated card to the waiter—it explains her allergy in
every language—and asks him to show it to the chef. After much discussion about ingredients, she settles on lobster bisque and carpaccio.

I return to the issue: “Why do I keep hearing about the dangers of twins at this conference?”

Keith is concerned about my reporter's spin: “Do not write about this as ‘doctors talking negatively,'” he warns me. “We are talking about
facts. …
The American public is absolutely brainwashed. They don't want to hear about the obstetric realities of having multiples. But the deafness has nothing to do with the doctor's
obligation
to tell them the truth.”

I confess to Dr. Keith that I took Clomid, a fertility drug, in 1996, when I had been trying to get pregnant for five months and was beginning to worry about whether I could. (Okay, I admit I'm neurotic and five months was too soon to start taking fertility drugs.) My doctor never discussed with me the fact that Clomid could beget multiples or what the risks were. “That discussion should have been had with you even then,” Keith insists.

My doctor just gave me the prescription; he didn't explain much at all.

“Yeah, he gave it to you like he was giving you aspirin for a headache,” Keith says dryly. “And I bet if you went back to him today and said, ‘Doctor, do you remember me
?
You gave me Clomid. Do you know that Clomid causes multiple pregnancies in x, y, or z number of patients?' Fifty cents to your dollar says he doesn't know. He's not thinking that way. He wants you to get pregnant.” (In fact, I did—and there were two dots on the sonogram at first, suggesting the possibility of twins; later, the second dot was gone, and I had one healthy baby.)

Blickstein has written about the fact that in the United States, contrary to Europe, nothing requires a doctor to enumerate—let alone emphasize—the risks. “There's no obligation right now for fertility specialists to lay out the facts,” he says.

There's also no law which mandates that doctors transfer one embryo at a time.

“Our field is aiming at self-censorship, which would achieve the same results,” says Hershlag. “And we are currently doing it and will do more.”

Grifo is outraged at the idea of legislation. “We are already the most highly regulated area of medicine in the world. Period. FDA, CDC, New York State Department of Health, you name it. Now, are these regulators telling me how many embryos to put back? Not yet. But you know what? That's next. And guess what? When they do, they're hurting my chances of making my patients pregnant. … I don't mind having limits set, but I think doctors still have to be able to give individualized care. Because when the patient has done four IVF cycles where she's had two embryos put back, and she is doing her fifth IVF attempt, I don't think putting two embryos is necessarily the right thing for that patient. Sometimes those patients need more embryos because they've already demonstrated that a larger percentage of their embryos aren't good. So that's where you can't regulate and legislate medicine.”

But the UK and several European countries have. The British Parliament decided to set a limit on embryo transfers—no more than two would be covered by national health insurance—in part, because of the 1998 dissertation findings of Keith's advisee, Chris Jones, who chose to analyze Britain's IVF data on the costs of raising preemies. “You keep on adding a zero to the end of the figure when you add an extra baby,” Jones tells me. “So if it's five thousand dollars with a singleton, it's fifty thousand dollars with twins. And with triplets, it's five hundred thousand dollars. It becomes so expensive because of the number of days these premature babies are spending in the NICU. Because we're now able to care for such low-birth-weight babies, babies who weigh five hundred grams are kept alive. They won't do very well—they might be blind and have cerebral palsy and all kinds of awful things. But they'll be kept alive. And each day in the intensive care unit costs as much as a single IVF cycle.” (This means between ten thousand and fifteen thousand dollars.)

Jones tells me his 1998 numbers are still “very current” because treatments have remained the same, as have the costs: “My research was the first to put a pound-sterling value on this epidemic, showing that IVF costs the UK National Health Service up to GBP sixty million per year due to multiple births and related neonatal services.”

I tell Keith and the Israeli doctors at dinner that I thought parents themselves were paying these bills.

“NO!” Keith and Baor bellow simultaneously.

“Do you really think that preterm baby care in the United States is paid for by the parents?” Keith asks. “Once the insurance—if there is any—runs out, the bill goes to the state. The hospital doesn't lose money. It gets reimbursed one way or another.”

Jones feels strongly that insurance companies could turn this ship around. “If the insurance companies were to take responsibility for the conception side of things, they could prescribe the conditions for implantation. They could say, ‘We're not going to pay for you to be loaded up with embryos because we'll end up paying for it in the NICU. … If you got the conditions right for a cycle
in the first place
, you could avoid the costs of the NICU. Because the babies are going to be healthy if you don't put back so many embryos, if you don't do what's called ‘embryo overdose.'”

Jones says his message hasn't been exactly popular. “I've angered the fertility clinics,” Jones admits. “They define success by getting women pregnant on the fewest possible tries. By and large, fertility clinics want to line their pockets.”

Hershlag counters firmly: “I don't think that greed is the major motivation for our being in this field. I hope it's not. We are all very privileged to be a part of people's lives, allowing us the honor of helping them make a family. I resent the fact that people who may be seeing sick multiples on the other end say that it is a result of doctors' immorality. We are all constantly talking about ways of combating this epidemic, but let's not forget why we did it: We did it to put
babies in people's homes. … Fertility treatment is now the key to a lot of people's happiness; we see it every day, and you are welcome to look at our walls”—his entrance hall is lined with holiday cards of beaming babies and kids—”and understand what this has meant to people who were childless.”

Grifo bristles at the suggestion that he's profit-driven: “I got news for you. I work my ass off. And I get paid a lot of money, but you know what? When I was thirty-three years old, working a hundred and fifty hours a week, making about ninety cents an hour, I didn't have anybody complaining about my salary; no one cared. And now, all of a sudden, I finally get to age forty-something and I start making money—after decades of killing myself—and all of a sudden I'm a criminal? And all I'm doing is helping people have babies? These people who criticize, they don't know my stress. They don't know how hard it is to come to work every day, what it's like to tell somebody they just had a miscarriage, to have a patient want to kill you because their IVF cycle didn't work, though you did your damndest to give them their best shot, and they're writing blogs about all the things you should have done because they don't know where to put their anger.”

Grifo does acknowledge that an insidious competitive climate has been fostered among clinics, but he faults Senator Ron Wyden's 1992 law, the Fertility Clinic Success Rate and Certification Act, which requires clinics to publish their pregnancy rates. “What do you think happened as a result?” Grifo asks. “Patients could now look at this government-sponsored Web site and see what the highest pregnancy rates were, and if your clinic didn't have the highest pregnancy rate, you weren't busy. That was an incentive for everybody to have the highest pregnancy rate; it wasn't an incentive for somebody to have the highest
singleton
pregnancy rate. Because of that law, American doctors were transferring too many embryos, no question.”

Blickstein illustrates how clinics' so-called success rates—which even the CDC warns don't tell the whole story—foster a bad pattern: “Let's say I am an American woman,” he posits. “I don't have much money, I'm infertile, and I need IVF. You, Abigail, have a clinic on
Fifth Avenue; Louis has a clinic on Seventh Avenue. You do IVF, and he also does IVF. By American law, you must publish your results. … You have published the fact that you have a twenty-two percent take-home baby rate. Louis has twenty-one percent. And IVF costs ten thousand dollars a cycle. So: I'm working very hard to have enough money, and I have finally saved ten thousand dollars. To which clinic should I go? To the twenty-two percent or to the twenty-one percent?”