The Maybe-Baby Dilemma
What to do with unused embryos, a byproduct of a booming fertility business, is a question patients are rarely prepared to deal with. They have several choices: finding a research program or fellow patient to accept a donation, discarding the extra embryos, or doing absolutely nothing.
Christine Pearlstein of Hudson was busy with three children under 4 when the letter arrived. Her fertility clinic needed to know what she and her husband wanted to do with their four frozen embryos, created during an in vitro fertilization treatment. They could order the clinic to discard the embryos. They could donate them for medical research or to another infertile patient. They could maintain them in their current frozen state and begin paying monthly storage fees. Or they could dispose of them in some other, unspecified way. The letter gave the pair 90 days to decide.
Pearlstein, a marketing professional, says she and her husband knew they were done having children, but throwing the embryos away -- the simplest option -- didn’t feel quite right to her. “We went through so much to get them,” she says. “I couldn’t just trash them.” But finding a better solution has proved a complex and often lonely road. “People just don’t talk about it,” says Pearlstein. “My parents didn’t go through it; my friends didn’t go through it. You’re at the mercy of the Internet.”
Since 1978, the year a British woman gave birth to the first “test-tube baby,” millions of eventual babies have been conceived in petri dishes. Since the 1980s, millions of embryos have been cryo-preserved, or “frozen” in liquid nitrogen, allowing patients a further chance at pregnancy if a first embryo transfer doesn’t work or if they want another child or children some years down the road. Massachusetts, one of the few states to mandate insurance coverage of infertility treatments, has the highest per capita usage rate of in vitro fertilization in the nation. Currently there are about 8,000 treatments begun here annually, and local clinicians estimate that 30 to 40 percent will result in at least one cryo-preserved embryo; one clinic reports it recently banked 22 embryos for a patient. According to numbers from the clinics, it is safe to assume that there are at least 20,000 embryos in storage around the state.
Many patients will use their frozen embryos to try for a pregnancy, but for myriad reasons -- twins on the first try, a decision not to have more kids, health or marital problems -- some will be left over. In the last 10 years, clinicians say, most insurance companies have started capping their coverage of storage costs at one year, and fertility centers are now pushing patients to make decisions sooner, even if the decision is to freeze them in perpetuity.
Plenty of people in our society care about the fate of frozen embryos, from scientists who see potential in stem-cell and other kinds of research to members of religious groups who consider embryos to be full human beings with rights that need to be protected. In the political arena, the fight often assumes that infertility patients will have -- or can be persuaded to have -- one of two diametric views: An embryo is a life, or an embryo isn’t a life. But patients themselves express far more complex attitudes toward these tiny clusters of cells and may experience an emotional attachment that, though heartfelt, doesn’t always correspond with viewing embryos as children-in-waiting.
Like Pearlstein, many patients say they feel ambivalence in the face of a confusing array of options. In early summer, Pearlstein and her husband made the decision to donate to research -- spurred by a desire to further a cure for two diseases that run in her family -- but they have not been able to carry out their wishes. They aren’t alone. In March, President Obama signed an executive order paving the way for more couples to donate their embryos to stem-cell research, but because embryo use was so recently limited by law, few labs are in a position to receive donations. A patchwork of state laws means that patients around the country have varying degrees of access to the three choices that the American Society for Reproductive Medicine deems ethically acceptable for spare embryos: thawing and discarding them (typically, they go into a clinic’s biohazardous-waste container), donating them to medical research, or donating them to another patient. Massachusetts law requires clinics to inform patients of these options, but not to help with arrangements. And the options a clinic presents do not represent an exhaustive list. In Massachusetts, patients have the right to do pretty much whatever they wish with their own embryos, other than sell them. (The same law prohibits the creation of embryos for research purposes.)
Clinics that create embryos for infertile patients typically require them to sign consent forms before beginning treatment, indicating what they want done with theoretical frozen embryos in the event of their own death or a divorce or a clinic’s inability to reach them. Some local clinics build later discussions into their treatment plans, but others do so only if a patient calls with questions; one boasts that patients can take care of the whole decision online, with a few clicks of the mouse. Given the sensitive nature of the dilemma, doctors are wary of imposing their own views on patients. As Dr. Kathryn Go, scientific and laboratory director of the Reproductive Science Center of New England in Lexington, puts it: “Patients have sovereignty over their embryos. We are like guardians.” But some area patients say that the initial conversation over the consent form doesn’t prepare them for the reality of having embryos.
Audra Murray of Newton has two children under 2 years old and two frozen embryos and says she’s struggling to decide what to do with her spares, a difficulty she hadn’t anticipated during her treatment. “When pregnancy test after pregnancy test has failed, you don’t feel like you can get pregnant and you’re trying to, and watching your bank account draining, you’re not concerned about the embryos.
“But then you have kids,” she says, “and the embryos seem like kids.”
Murray says that as a Catholic, she considers an embryo to be a life and feels she has no choice but to implant hers. At the same time, she and her husband don’t feel they can manage more children right now, financially or logistically. Yet donating the embryos to another couple feels wrong, too. “I would never give my child up for adoption,” she says.
Right now, Murray and her husband are storing their embryos and postponing the decision. “I think some couples keep them stored until the woman is in menopause,” she says thoughtfully and acknowledges she may go that route herself -- reducing to nearly zero the chances of another pregnancy -- but probably not. “I think we’ll do one at a time,” says Murray. “If it takes, it takes; if it doesn’t, it doesn’t.” Murray says that if she had realized how difficult her decision would be, she’s not sure she would have been as aggressive with fertility treatments. Then she pauses. “No, we would have. We would have walked over broken glass to have kids.”
Murray’s sense of having no good options, nothing that works both for her family situation and her ethics, is not uncommon, say doctors who treat infertility patients. Some people in Murray’s predicament simply drop out of contact with the clinic, says Dr. Robert Brzyksi, a Texas gynecologist who is chairman of the ethics committee of the American Society for Reproductive Medicine. This is thought to represent “an absolute inability to decide,” says Brzyksi.
The society’s ethics guidelines direct clinics to dispose of “abandoned” embryos after five years, and most require patients to sign forms acknowledging that if they drop out of contact with the clinic, their embryos can be destroyed. So abandoning the embryos is, in one sense, destroying them without destroying them, forcing someone else to do what may feel like dirty work, or just putting off what may be the emotional work of acknowledging an end to the embryos’ potential.
“The notion of doing anything was really distressing,” says Naomi Zikmund-Fisher, a married mother of two from Michigan who grew up in Concord. “It was like a checkoff: no more children.” But the couple liked the idea of donating to science because the husband, Brian Zikmund-Fisher, who was diagnosed with cancer in his late 20s, had been helped by medical research. “It satisfied my need to feel like these embryos we had worked so hard to create were being used productively,” says Brian.
The desire for a choice that feels productive is quite common, says Dr. Anne Drapkin Lyerly, a gynecologist and bioethicist at Duke University. Lyerly began studying patient attitudes early in this decade, when Congress was debating stem-cell research. She says she sensed a disconnect both between what doctors thought and what patients thought and between the political debate and patients’ wishes. In a 2003 survey she cites, heads of fertility clinics estimated that only 3 percent of embryos were likely to be donated for scientific research. But in Lyerly’s own 2007 survey of 1,020 patients from across the country, more than 50 percent expressed significant interest in scientific donation.
Then there’s the public debate: “There had been this presumption that if you care about an embryo, if you think it is deserving of moral respect and concern, it is unacceptable to destroy it,” says Lyerly. Instead, she says, she heard from patients who care about and respect their embryos without seeing them as children -- an attitude that may be particularly true among patients who had many embryos not “take” and learned firsthand that not every embryo is capable of becoming a baby. Research, for some, allows them to feel as if something positive comes from the cells they’d undergone invasive, difficult medical procedures to create, and gives them a sense of resolution. “It revised pretty profoundly our understanding of people’s desires,” says Lyerly.
Some patients will revise their own desires many times before they find resolution -- especially, it seems, if the embryos they have stored come from the same in vitro cycle as babies they carried to term. Linda, a South Shore nurse who doesn’t want her last name used to protect the privacy of her family, underwent an in vitro fertilization in 1996 that resulted in live twins and left five spare embryos. She soon became busy with two babies and mostly put the frozen embryos out of her mind, believing her clinic would dispose of them after three years. Five years passed.
Then a letter arrived from her clinic asking what she wanted done with the remaining embryos. Linda and her husband did not want more children. Also, she had suffered complications during her pregnancy and was told more children might not be possible. Still, while she had tacitly agreed to discard her embryos, she could not bring herself to give the order. “I had friends and family tell me, ‘Oh, throw them away,’ ” Linda recalls. “I couldn’t. Our children were in the same batch. I’d look at them and think, ‘Wow, if someone had grabbed a different straw, our children would still be sitting there.’ ” (Cryo-preserved embryos, which are about the size of a grain of sand, are stored in containers that resemble plastic drinking straws.)
Linda got a form letter listing the three ethically approved options. She didn’t like the idea of anonymous donation, so she went online to look for more options and found Nightlight Christian Adoptions of California, which since 1997 has offered in vitro patients the chance to choose someone else to “adopt” their embryos. Many local clinics don’t facilitate donation themselves -- it requires screening tests and legal procedures -- but they will work with an agency like Nightlight that does.
For Linda, who calls herself “Catholic but prochoice,” thinking about the process as “adoption,” and being able to choose the family, made it more compelling. Over the span of a year, she and her husband reviewed the stories of four couples and “fell in love” with one pair. “They were a lot like us,” she says. “They lived in an area like us; they had a dog; they had a marital history like ours, where they kind of grew up together. And she was a nurse like me.”
Linda’s five frozen embryos were shipped across the country, where the other family had a daughter and then, later, a son using the embryos. (No embryos were left over after the procedures.) The two families have never met in person, but Linda thinks they will one day. Her kids refer to the other children as “our brother and sister,” and Linda and the woman she calls “the adoptive mom” often e-mail each other, seeking similarities in their children’s personalities, likes, and dislikes. With a laugh, Linda says, “What mother doesn’t love the opportunity to gush about her kids? She loves to hear my stories, whereas anyone else would be yawning.”
Giving embryos to others isn’t a common resolution; Nightlight, one of a handful of organizations connecting people with spare embryos to those seeking parenthood, has facilitated just 215 births since its inception in 1997. In fiscal 2008, the US Department of Health and Human Services spent $3.9 million promoting embryo “adoption awareness,” but it remains an unusual choice -- albeit one that is deeply meaningful for some.
Most patient advocates and doctors support the idea of connecting people with spares to those who want to use them, but many prefer the term “donation” to “adoption.” Barbara Collura is the executive director of Resolve: The National Infertility Association, a patient-advocacy group based near Washington, D.C. She’s concerned that calling the procedure an “adoption” is a first step toward defining embryos as people, an effort already underway in some states. Louisiana defines embryos as “juridical persons” and prohibits their use in medical research. In Colorado, a “Personhood Amendment” giving constitutional rights to embryos was on the 2008 ballot. While voters rejected it 3 to 1, similar initiatives have been filed in a handful of other states, though none of them in New England.
“We have grave concerns that the options available to fertility patients now, and the doctors’ ability to treat those patients with the best techniques, may be, in fact, hampered,” says Collura. Her concern: Since the process that creates embryos is inherently risky, doctors may fear that they would face criminal charges simply for performing an in vitro procedure. After all, many fertilized eggs simply cease cell division -- and are no longer viable -- before freezing or transfer. Others aren’t viable after they have been thawed. Still others fail to implant in the uterus. Collura’s organization imagines a number of bizarre legal scenarios: Could a doctor face a murder charge if an embryo didn’t survive the petri dish? Would a woman with a history of miscarriages be denied fertility treatments on the grounds that she posed a threat to her own embryos?
Collura says her organization is increasingly finding itself at odds with antiabortion groups, a surprise to her, since both are, in some ways, all about making babies. Yet the two have fundamentally different views of embryos. “We view them as the clear domain of the creating man and woman, who have full rights and responsibilities,” says Collura. “The right-to-life movement says, ‘Wait a minute, those are a human life.’ ”
Nightlight’s executive director, Ronald Stoddart, says his program’s primary goal is to “give embryos the chance to be born.” Then he adds, “Having been motivated that way, we also see ourselves as serving the needs of the donors and the adopting couples.” Patients who want to “adopt” don’t necessarily do it to save embryos. Many doctors I spoke to say they have seen increased interest recently in using other people’s embryos because it’s the cheapest option for patients who cannot get pregnant using their own eggs and sperm. Implanting an existing embryo typically costs less than $5,000; an in vitro cycle with a sperm and egg donation can cost more than $25,000.
While the nature of embryos remains a source of political controversy, some patients seek resolution to their dilemma in a way that suggests they see embryos neither as life nor as not-life. Lyerly’s 2007 survey discovered that patients were eager for a disposal ceremony, something akin to a funeral for their thawed cells. The survey also indicated significant interest in what Resolve has begun to call “compassionate transfer” -- embryo transfer procedures that would not result in pregnancy. This can take several forms. Boston IVF reproductive endocrinologist Dr. Alison Zimon says she hasn’t performed the procedure, but she has heard of patients asking to have extra thawed embryos placed in the vagina, where it is impossible for them to implant and grow, instead of in the uterus. Dr. Joseph Hill, a reproductive endocrinologist at the Fertility Centers of New England, estimates that of all the patients who come back after a successful first pregnancy to use their frozen embryos, a tiny minority aren’t really trying to get pregnant again. Sometimes they will wait until near menopause before they return for the transfer; some refuse the hormones that are typically used to help the embryo implant. “It’s sort of saying, ‘Oh, if it’s God’s will, it will happen,’ ” he says. He says he makes sure patients understand that the treatment they want is unlikely to result in a pregnancy, then adds, “From my standpoint, I’d rather not be doing it that way.”
Lyerly says that 19 percent of her respondents expressed interest in these kinds of transfer procedures. She thinks efforts like these and disposal ceremonies bring emotional comfort to some patients. “I really understand how untenable it is for people to think about a lab technician dumping their embryos,” she says. “This isn’t how we attend to biological materials to which we ascribe meaning.”
These requests seem to fill an emotional need for some patients but pose difficult questions for fertility doctors, says Lyerly, who is also a gynecologist. “Do you bill for that?” she muses. “Especially if you don’t think it’s therapeutic?” (Hill says he does bill the patient’s insurance for transfers unlikely to result in pregnancy just as he would with any other embryo transfer, since it’s the patient’s choice not to use the recommended drugs.) It’s also worth noting that the time a doctor spends on a nontherapeutic procedure is time not spent helping someone get pregnant -- this in a highly competitive industry, where doctors get judged by their take-home baby rates.
Of course, not everyone derives psychological comfort from something like compassionate transfer or a burial ceremony or from donating to science or another family. The process of finding resolution is as varied as patients’ feelings toward their embryos. While more conversation with doctors at different stages of the process may make the decision easier for some patients, it will likely always remain an emotional, challenging moment for many, if for no reason other than it marks the end of the childbearing stage of life.
Nicole Soto, a mother of two from Winchester, says she has no sentimental attachment to her three frozen embryos. “They’re 5-day-old embryos without a heartbeat,” she says. “They get implanted in women all the time and die anyway.” But she knows she will have a hard time making a decision to discontinue storage. She and her husband want one more child, not three -- probably. “I can’t see us changing our minds, but you never know,” says Soto. “I think that’s the hardest part of deciding. For couples who don’t deal with infertility, they can change their minds whenever they want. Infertile couples don’t have that luxury.”
Alison Lobron, a writer in Cambridge, is an associate editor at CommonWealth magazine. Send comments to email@example.com.
Correction: Because of an editing error, a story in Sunday's Globe Magazine on frozen embryos mischaracterized the ethics guidelines of the American Society for Reproductive Medicine. The guidelines allow clinics to dispose of abandoned frozen embryos or store them indefinitely.