April 11th, 2007
"In Vitro We Trust"
By Andrea Curtis
The heartbreak of infertility is driving thousands of Canadian women to the costly science of assisted reproduction. This is the story of the boom in a rapidly advancing medical field, the agony of hope it offers, and the strangers willing to give the ultimate gift: a baby.
Last summer, Donders began a month-long series of blood tests and then vaginal ultrasound before the frostie was placed in her uterus. The embryo didn't implant, however, and Donders was just coming to terms with the end of that particular dream when she realized in September that she was pregnant again without any medical assistance. Although everything seemed fine, when she went to see her doctor in November, she learned she had miscarried at 16 weeks.
Dani Donders is uncommonly articulate about her wild ride on the infertility roller coaster, but the truth is, her story isn't unusual. According to the Canadian Fertility and Andrology Society, 15 per cent of Canadian couples ages 18 to 40 report the inability to conceive after a year of trying. For these people, what science calls "assisted reproduction" is increasingly seen as an option. More and more lesbian and gay couples and single women are also choosing to have families, and they, too, are turning to medicine for help.
In fact, by all indicators, the assisted-reproduction revolution has not just arrived, it's set down roots. The International Committee for Monitoring Assisted Reproductive Technologies estimates that in the 30 years since the first IVF baby, three million children have been born as a result of assisted reproduction. This country alone boasts 28 fertility clinics - mostly in large urban centres - and recent figures show Canadians started nearly 8,000 IVF cycles in 2004. (No one collects national statistics on common procedures such as IUI and artificial insemination, but there are thousands more using these methods, too.)
Particularly in middle-class communities, assisted reproduction now seems almost commonplace from relatively straightforward insemination with donor sperm to egg retrieval, intracytoplasmic sperm injection and IVF. And with ageing celebrities such as Joan Lunden using a surrogate to carry her twins, Brooke Shields touting the wonders of IVF, and Jodie Foster becoming a single mom by choice, it all looks easy, even glamorous.
The reality, as Donders can attest, is far murkier and more complex. Anyone entering this world is confronted by a bewildering array of options to absorb, clinics to consider and fees to cover. And the cost is not inconsiderable. Except under the Ontario Health Insurance Plan, which covers IVF for women with bilaterally blocked fallopian tubes, major fertility treatments are not funded by provincial health care.
And none of the technical business holds a candle to the steep emotional learning curve experienced by women who endure invasive pokes and prods, rounds of drugs and painful procedures. The shifting tide of hope and disappointment, the neuroticism, anger, grief and, sometimes, unbridled joy, is impossible to overstate.
What's more, reproductive medicine is also at the centre of ongoing ethical and legal debates pitting the demands of individuals against the moving target of the collective good. How far, for instance, should science go to make it possible for men and women to have their own genetic children? And if infertility is a medical problem, as most physicians argue, why isn't treatment covered by Canada's much-touted universal health-care system?
Throw into that messy stew the Assisted Human Reproduction (AHR) Act, which was made law in March 2004 to address issues of assisted reproduction, as well as outlaw cloning, commercial surrogacy, the purchase of eggs and sperm and other activities considered "unacceptable." The legislation also established an agency responsible for licensing clinics and enforcing the act. Three years later, however, most of the regulations are still in the development phase. And the executive and board of the agency were only just appointed in December 2006 stacked, some fertility specialists claim, with social conservatives. Many patients, doctors and lawyers are perplexed; others are angry about the slow pace and ambiguities that have resulted.
The truly astonishing thing is that these obstacles seem to make little difference to the thousands of Canadian women willing to do almost anything to their bodies, minds and bank accounts in order to have a child of their own. It's something, these women say, that you can't understand unless you've lived it.
Welcome to the new family way.
Siobhan McCarthy has always been the sort of woman who makes plans for her life and sticks to them. So when the now 46-year-old social worker turned 38 and hadn't met Mr. Right, she knew what she had to do. "I wanted a family and always had it in the back of my mind that if I didn't find someone I would do it on my own," she explains. "I decided I'd go with an anonymous donor, and I started the process right away."
McCarthy's first experience with a fertility clinic was a nightmare. The doctor asked inappropriate questions about her sexual orientation, then offered up his own son as a sperm donor. After he told her she had to choose a donor on the spot, she bolted. Fortunately, the next clinic, recommended in Jane Mattes's Single Mothers by Choice, a pioneering book on the subject, treated her smoothly and professionally.
McCarthy took her decision about the donor very seriously. "You get to read all about him. Someone at the clinic wrote a profile. He just sounded like a nice person. I would have dated this guy." From there, the process was relatively simple. She went in for bloodwork every morning to determine when she would ovulate, had ultrasounds and was inseminated with sperm that was previously screened. It took McCarthy three tries to conceive, costing her $300 each time. She gave birth to a healthy daughter, Kyra, in October 1999.
Two years later, a new job, a new house and renovation behind her, McCarthy started thinking seriously about doing it all over again. When she returned to the clinic, she was relieved to find that they still had Kyra's donor on file; the sperm was frozen and available only to parents who had used the donor before and wanted their children to have genetic siblings. But the price had gone up to help cover the cost of cyropreservation, with the clinic charging McCarthy $1,000 for each insemination attempt. She was thrilled when she conceived on her first attempt. Kyra's baby sister, Niamh, was born in February 2003.
Today, with two young daughters, a job as a manager at a busy children's mental-health centre and an active neighbourhood life in Toronto's Upper Beach, McCarthy is juggling a lot of balls. She worries a bit about how her daughters will feel about their conception when they're older. "I suspect they'll be mad about it. Why shouldn't they? I got them into something they have no control over."
Kyra already asks why she doesn't have a daddy. "Early on, I would tell her everybody has a different family. That worked for a few years. Now I also say a very nice man helped us with his seed. He's a father, not a daddy.
"I worry about this stuff, but in my work if I've seen one thing, it's that having both parents doesn't guarantee anything," says McCarthy. "You can raise well-adjusted, delightful children if you give them what they need. My kids talk a lot about our family. They really believe that's what we are. It totally validates it for me. I feel blessed."
It took nearly two decades of consultation, negotiation, hair-pulling and hand-wringing to come up with Canada's 2004 law on assisted reproduction. In this emotionally and ethically fraught territory, legislative standards were clearly necessary to control the rapidly expanding industry that has grown up around the new science. Predictably, the reaction to the law was mixed, with the AHR Act hailed by some as a triumph for women and children, and condemned by others who feel it covers too much ground, combining such things as a prohibition on cloning with the more patient-centred requirement for individual counselling before each cycle of IVF.
More than three years later, with little in the way of regulations and the monitoring agency only just getting started, even some of the act's advocates have suggested it is merely a "paper dragon," and that the delays may threaten the health and safety of Canadian women. "The slow movement forward. . . contrasts starkly with the rapid, uncontrolled proliferation of reproductive technologies and their applications in an increasingly commercialized area of medicine," warned doctors Abby Lippman and Jeff Nisker in an editorial they co-authored last summer.
For its part, Health Canada says it's breaking new ground as it brings in regulations in stages. This takes time, government spokesperson Carole Saindon explains, since "comprehensive consultations are necessary.... It's a complex set of regulations based on rapidly evolving science and involves profound ethical issues."
Dr. Nisker knows these ethical issues firsthand. In 1993, the University of Western Ontario researcher, professor and physician learned that the groundbreaking work he'd been involved in on pre-implantation genetic diagnosis (PGD) was being used for gender selection and by a U.S. scientist experimenting with human cloning.
PGD was originally designed to test embryos for genetic and chromosomal conditions such as cystic fibrosis. Dr. Nisker was so disturbed by what he saw as an abuse of his research that he stopped doing PGD altogether and began to explore the ethics of the science, particularly its alarming potential for creating "designer" babies, selected for gender or other attributes. He began writing plays about the subject, and through his teaching at the university worked to bring the complexity of the issues to public attention.
Despite his serious concerns about the slow pace of implementation, Dr. Nisker says he believes that the AHR Act is very solid legislation that manages to take the major ethical issues off the discussion table and move them into the domain of law. The focus now, he says, should be to make assisted reproduction available to everyone, regardless of income. "IVF is extremely expensive, and you don't usually do it just one time," he explains. Indeed, a single cycle generally starts at $4,500 and goes up to nearly $6,000, and then there are clinic fees, drugs and extra treatments, pushing the total close to $10,000 for the first cycle.
"Women with lesser income risk getting lesser care, more OHSS - more complications altogether," Dr. Nisker continues. "This is not ethical reproductive medicine in the broader sense of the phrase."
He goes on to argue that since 1994, when Ontario removed IVF from its list of funded health-care services, assisted reproduction has become a prime example of Canada's two-tier system. "We're behind the eight ball and alone in the developed world in not funding assisted reproduction. In Australia you can have as many IVF cycles as you need, paid for by the state. Even American HMOs are funding it. Here, the success of the AHR Act is based on developing a culture of altruism - people donating sperm, eggs and embryos without compensation - but without public funding it's not going to work."
Beverly Hanck, executive director of the Infertility Awareness Association of Canada (IAAC), which coordinates a network of support groups, says she and her colleagues are working hard to lobby the provinces to fund IVF. "There's this 25 per cent drop in the Canadian birth rate that the government worries about," she says. "Why not do something about it? Fund fertility treatments."
Hanck also argues that multiple births - with the increased risk of complications and ensuing costs - could actually be reduced by at least 50 per cent if government support for IVF was combined with education, better monitoring of women undergoing ovarian stimulation and a reduction in the number of embryos transferred. (Some doctors do three or four at a time which can result in high-risk triplet, even quadruplet, births.) "With the kind of savings the government would see from cutting down on multiple births," Hanck says, "they could fund IVF."
Such coverage for IVF might also have an impact on a phenomenon Saskatoon-based professor of obstetrics and gynecology Roger Pierson, communications chair of the Canadian Fertility and Andrology Society (CFAS), calls "reproductive tourism." Because of the AHR Act's prohibition on egg, sperm and embryo donors being compensated and a culture of altruism not yet established, it's currently next to impossible to find Canadian egg or embryo donors, and even sperm is at a premium.
Many infertile couples, Dr. Pierson says, end up going stateside. "People know all they have to do is go to the U.S., stay in a hotel for a few days, achieve a pregnancy and drive back. At the border they ask, Have you had any modifications done to your car? Brought back any booze? They don't say, Did you get an embryo implanted?"
Dalit Hume is tall and fit, with long curly brown hair and big sympathetic eyes. The 42-year-old professional fundraiser carries herself with the grace of the ballerina and model she was as a young woman. But her story is a difficult one, and while we're talking in a trendy Toronto café, she has to pause every once in a while to wipe away the tears that well up without warning. "When my husband, Peter, and I started trying to get pregnant, I was 33 years old, and we just assumed it would work," she explains.
After six months of trying, the couple decided to see a fertility doctor and begin the investigation process. The clinic began by monitoring Hume's blood to see if she was ovulating regularly, then moved on to three cycles of Clomid, a drug that stimulates the ovaries to produce eggs. When that didn't work on its own, she tried two medicated cycles of IUI. For this process, her husband's sperm was "washed" - in order to separate the sperm cells from the semen and offer a greater chance of success - then injected using a very thin catheter through the cervix and into her uterus.
Around the same time, Hume mentioned to her doctor that she'd been experiencing night sweats, waking up feeling as if she'd been doused with a bucket of water. Tests were ordered and Hume was soon delivered the devastating news that, at 34, she was experiencing premature ovarian failure, making her body mimic some of the symptoms of menopause.
"I'd gone in for an injection, thinking I was going to get pregnant, and found this out. I just sat there and cried for a really long time," she says. Because of the decline in her ovarian function, Hume was told that her chances of conceiving were small. She and Peter had already begun exploring adoption and now they considered, and decided against, IVF with a donor egg, since she'd also been told the quality of her own eggs was poor. The expense was enormous. And they weren't comfortable entering into what Hume calls "the lifetime of complexity" that she felt creating a child with another woman's egg could bring. They decided to keep trying - by not using birth control - until she turned 40, though they were advised not to hold out hope.
For a while, Hume and her husband immersed themselves in other activities. But something had changed between them, and one night Hume put her finger on it. "I told him, 'We're like empty-nesters only we never had the kids.' I said to him, 'Is this because you want to be with someone who can have children?'" Sitting across a narrow café table, Hume swallows the lump in her throat and dabs at her eyes. "But he told me that wasn't it. He said, 'I want to be with you. You're my family.'"
Since that emotional evening, Dalit and Peter have found reassurance in supporting one another and helping others. He decided to leave computer programming and return to school to do what he'd always wanted: be a firefighter. She throws her considerable energies into her after-hours work as a dance instructor as well as a volunteer support-group coordinator and fundraiser for IAAC. She sees it as her mission to educate about the meaning - in an emotional sense, especially - of infertility. "I think sometimes people just don't get it. There's this idea that infertility is something you can fix, something technical. But the technology doesn't always work."
In fact, CFAS's most recent stats show that only 24 per cent of IVF treatment cycles attempted in Canada result in a live birth, a figure that's on par with other countries. Not to put too fine a point on it, but that means 76 per cent of attempts did not work out - a rate that's similar to Mother Nature's own. And women over 40 have an even smaller chance of success, with a 90 per cent failure rate.
"There's this one miraculous story and everyone tells it," says Hume. "So and so down the street got pregnant after years of trying. It drives me crazy. Or they tell me to relax, or if we just adopt we'll get pregnant. Someone told me I should volunteer at the Humane Society. People can be very insensitive. But I'm not going to lie low and let it happen. I'm going to educate people."
Hume turned 40 two years ago, and she and Peter closed the book on having children of their own. "We could reconsider adoption," she says, careful to keep her voice steady, "but we feel we are contributing to the world. Sometimes my heart aches, but mostly we're good with our decision. I feel like we're making lemonade out of lemons."
It's been 24 years since Robby Reid, Canada's first "test-tube baby," was born in Vancouver on Christmas Day. IVF was so new, so unimaginable, even frightening then that when his mother went public a few months after his birth she was fired from her job and hounded by reporters. Though much has changed since 1983, questions still swirl around the relatively young science of assisted reproduction.
Probably one of the most polarizing issues remains surrogacy, which first attracted attention in the mid-1980s with the controversial case in the U.S. of Baby M, in which the surrogate (whose egg was used to create the embryo) refused to give up the infant. Today, the most common form in Canada is "gestational surrogacy," when a friend or sibling of an infertile couple, sometimes even a stranger, carries a baby created using the intended parents' egg and sperm.
Twenty-nine-year-old Sally Rhoads became a surrogate for the first time eight years ago. A striking redhead with the kind of smooth, pale skin people call alabaster, she says she always knew she'd like to try it. "I read about surrogacy in school, and after having my first son I just thought, I really want to help someone else have this."
The Stratford, Ont., mother of two started her research online and soon found a Maryland couple who'd been in a tragic car accident when the mother, Heather, was eight months pregnant with twins. She lost her babies and had to have a hysterectomy as a result but was still able to produce eggs. Rhoads chatted online with her every day, and by the following winter, Heather was ready to do an egg retrieval.
Four embryos were created with Heather's eggs and her husband's sperm, though because she was 42 and the embryos had to be frozen to await transfer to Rhoads's womb, they were given only a small likelihood of success. "For them, it was one shot or no kids," Rhoads recalls. "Heather held my hand during the transfer and cried. When I told her it worked, that I was carrying twins, I think she was totally surprised, even a bit afraid to get excited at first."
Today, the twins, Peter and Victoria, are six, and Rhoads and Heather talk nearly every week and e-mail every day. "I send them gifts on their birthday or at Christmas," Rhoads explains. "They know about Sally in Canada. Heather has told them that her tummy was broken. She's always telling them how special they are because it took so many people to bring them into the world - all these doctors and lawyers and clinics."
About 10 months after the twins' birth, Rhoads tried an embryo transfer for another American couple. It didn't work that time, and she found the experience emotionally draining, particularly taking the drug intended to manipulate her cycle so it was on track with the intended mother's. Rhoads, in fact, figured she'd stop pursuing surrogacy, but while she was breastfeeding her second child in the winter of 2004, she started thinking about it again.
Since then, Rhoads has done four other transfers for three other couples with harrowing infertility stories: One woman was born without a uterus; others had endured numerous unsuccessful IVF attempts. None of these transfers have produced a baby, and one ended in an ectopic pregnancy in which Rhoads lost one of her fallopian tubes and half her blood volume, nearly dying as a result.
"Some people say it's like an addiction. Once you've experienced being a surrogate, you want to do it again," Rhoads explains. "For me, I'm just really passionate about it."
She's translated that passion, in fact, into creating her own information, referral and support website for people interested in surrogacy. These days, when she's not working as manager at a local farm or hanging out with her family, she spends her time dispelling what she sees as misinformation about the impact of the AHR Act on surrogacy in Canada.
The confusion comes in because while it remains legal for a woman to carry a child for someone else, it is now illegal to compensate her. (Before the act, Canadian surrogates were paid an average $15,000 fee.) Intended parents may cover the "carrier's" expenses, although Health Canada regulations have yet to be tabled concerning what is an acceptable expense and how much is allowable. All of which has created an odd kind of limbo for surrogates and intended parents, and, as a result, no one is willing to talk in specifics about the amount of money paid out.
The law essentially distinguishes between what has become known as "commercial" (paid, and therefore illegal) and "altruistic" (unpaid) surrogacy. It's an attempt to balance the concerns of infertile couples who want surrogacy to be a legal option when there are few other choices with those of ethicists and others who argue that women who offer their wombs for a fee are being exploited. And, critics wonder, what do such financial transactions mean for the children of these arrangements?
But the way Rhoads sees it, the law isn't satisfying anyone, and infertile couples are suffering most because the act has made it extremely difficult to find a surrogate in Canada. Though most surrogates she knows aren't in it to make money, she says, "They end up feeling used, like a piece of meat, when they aren't properly compensated for their time and effort."
If all this sounds a bit out there (and, admittedly, only a small number of Canadians are actually willing to go the surrogacy route), it's worthwhile to remember that the assisted-reproduction methods that seemed like science fiction 25 years ago are now common cocktail-party conversation. And the speed of that social transformation looks positively glacial when compared with the current climate of rapid scientific innovation, greater social acceptance and couples demanding new and more effective ways to treat infertility. Clearly, it's a debate that's far from over. In fact, it will no doubt intensify in the next two decades, as researchers and doctors learn more about how to manipulate the human reproduction cycle, and patients and advocates ask hard questions about what it all means.
When I spoke to Sally Rhoads in February, she'd just finished her seventh IVF cycle, this time for a couple from British Columbia who'd tried and been unsuccessful in 11 previous attempts. She had four embryos transferred to her while the intended mother had one placed in her own uterus. But none of the embryos survived. Rhoads says doctors told her the quality of the eggs was likely the reason they'll try again next month with an egg donated by a Quebec woman. And if that doesn't work? Rhoads says it's probably the end of the road for her: "It's time for me to retire from trying to help."