Conceivability_What I Learned Exploring the Frontiers of Fertility

by Elizabeth L. Katkin

  The difficult part seemingly done, Claire returned to the fertility clinic expecting to proceed with insemination during a natural cycle. The doctor she met with breezily reviewed a medicated protocol with her, despite Claire’s protestations that she was not a fertility patient because she had failed to conceive naturally while actively trying; to the contrary, absent sperm, she had never tried to conceive. Much to her surprise, the doctor told her that her blood work indicated that she had a very low chance of getting pregnant. Despite Claire’s request to try a natural cycle, and her attempts, based on a scientific article she had read—to question the need for their protocol given her particular circumstance—she was funneled toward the medicated cycle. Instructed by her doctor to choose between oral or subcutaneous medications, feeling isolated, overwhelmed, and fearful of being unable to conceive, Claire reckoned that she had no option but to use the injectable hormones. Although the drugs worked “so well” that she had multiple eggs, the clinic never counseled her on her options, or warned her of the risk of multiples. They proceeded as planned with the insemination.

  To their shock, Claire and Daphne learned at her first ultrasound scan that Claire was pregnant with four babies. Already enormous in her first trimester, feeling horrible and afraid, she and Daphne had to sort through their options. Worried about the impact of carrying four babies to term as well as the risks of selective reduction, she asked her clinic for help and support, and to possibly put her in touch with others who had been in her shoes. She was met with silence.

  At thirty-three weeks, five days, nearly twenty weeks after a stressful reduction procedure, Claire gave birth to two small but very robust boys. Shortly after their birth, she and Daphne registered them on the family contact list, hoping to find any half siblings. When the twins were four and a half years old, a family with a daughter of the same donor signed up. The families got together when the kids, almost the same age, were nearly six. One of the boys looked exactly like his half sister. The children got on well, and the families plan to keep in touch. Remarking that she didn’t know how unusual their experience was, Claire was surprised that more families hadn’t joined the sibling registry.

  It turns out that experiences like Claire and Daphne’s are happening with increasing frequency. Eleven half siblings between the ages of five and twelve from five families met in Orlando for a “family reunion” in 2016.21 Zoe, who has twenty-eight half siblings, has met half of them—two, quite remarkably, by accident—and has also met her donor. Sarah and Jenna discovered that they have twenty-one half siblings and met several of them, along with their donor, at a gathering in Cape Cod. Susanna, a mother of two belonging to the supersize sibling group now believed to number as many as two hundred half siblings, took a seven-week, six-thousand-mile, twenty-four-state, cross-country trip with her two donor-conceived kids to meet eleven of their half siblings.22 Will relationships like these give new meaning to the idea of extended family?

  The Egg Hunt

  Pietro and Peter found the donor selection process to be an uneasy one. As two men, it was, of course, clear to them that they would need an egg donor once they decided to have a child with a surrogate. This simply fast-forwarded them to the awkward stage of selecting their donor.

  “To know that you are deliberately choosing the genetic material of your future child,” Pietro mused, “it is not how you expected it would be. It’s like invading someone’s life without them knowing it,” he told me, referring to reviewing the detailed profiles of potential donors. Working with an agency in Houston, he and Peter had far more information available to them than Richard and I had in Moscow: baby, teen, and adult pictures; health records; family history; academic history; previous donations; and success rates. “That part of analyzing someone, with a price tag on it, was very strange for me,” he recalled with discomfort. Like me, he found it far more difficult than choosing a surrogate. He was troubled by the idea of shaping his future offspring based on specific features, and having to figure out which features mattered to him. “In the real world, life doesn’t work that way . . . you don’t pick friends based on tall/short, brunette/blond.”

  Pietro and I are not alone in finding egg donor selection surprisingly thought-provoking. “It forces you to think about what really matters, or if it matters at all,” said a woman who does not generally like to talk about the fact that she used a donor. While some place great importance on finding a donor with particular attributes—hair and eye color, athletic prowess, Ivy League degrees—others, like Paula, care almost exclusively about the likelihood of success and having a healthy baby.

  Originally told she would need an egg donor at her very first consultation with a fertility specialist, Paula was livid that the doctor wasn’t willing to at least give her own eggs a chance. But two years and two miscarriages later, after working with additional fertility specialists and researching her own situation extensively, she made peace with the idea of using an egg donor. Absolutely determined to have a baby, she pored over donor profiles, searching for a woman who “looked and felt” like her. She found a perfect fit, and although not a proven donor—meaning she had not successfully donated before—Paula decided to go with her gut instincts. The cycle was deemed a success and Paula became pregnant. She was so thrilled that she didn’t care at all that she was carrying another woman’s egg. Her baby inside was thriving, as confirmed by blood tests and the all-important ultrasound scan when they saw the pulsing heartbeat. Sadly, by the time of her second ultrasound, at nine weeks, the baby’s heart beat no more. Their third miscarriage, with what was supposed to be the foolproof donor egg, hit Derrick hard. Squatting next to Paula in the hospital room, he shouted obscenities at the top of his lungs. This was their backup plan. What next?

  It took a year for Paula and Derrick to try again, but try they did, back at her prior clinic. Focused exclusively on success this time, Paula worked with one of their recommended proven donors, who produced nine excellent-looking embryos, far greater than she herself had ever had. They transferred three of the embryos to Paula and froze the remaining six. She became pregnant, but quickly miscarried. As with her previous donor pregnancy, the fetus was completely normal. After further consultations and eventual immunology treatments to tame her natural killer cells, they transferred three more of the donor embryos to Paula. Another pregnancy. Another miscarriage. With only three donor embryos left, mounting bills, and falling spirits, Paula and Derrick transferred their last three embryos into a surrogate in February 2012. Just seven months later, together with the dozen or so medical professionals tasked with keeping their tiny preemies alive, Paula and Derrick welcomed their long-awaited twins into the world, with not a thought as to their genetic origin.

  Unlike Paula and Derrick, and many others who turn to egg donation, Megan and Scott didn’t have fertility problems. They met, fell in love, and got pregnant very easily, the old-fashioned way. Megan had an incredibly smooth pregnancy and gave birth to a beautiful boy. A few days later, they were shocked to learn that their gorgeous, healthy-looking son had sickle cell anemia, a disease affecting 8 percent of African-Americans, which requires that both parents be carriers. Neither knew that they possessed the recessive gene. The diagnosis rocked their world. Overwhelmed by the lifelong care their son would require, and digesting the fact that they faced a one in four chance that a second child would have the same disease, Megan could not fathom having another child. Scott, on the other hand, couldn’t fathom not having another child.

  After four years of persuasion, Scott convinced her to try for another baby using IVF with genetic testing to screen out any possibility of sickle cell. After running some tests, their doctor advised them that while, at age thirty-nine, Megan could still conceive, their odds of success would be as much as two to three times greater if they used a donor egg. It was a surprise to Megan to hear that she needed an egg donor, especially since she had conceived so easily the first time. It took her a while to get her head around the concept, as
well as the expense, but she ultimately decided that it was far more important to her to have a healthy child than a biological child.

  Her decision made, the clinic required her to undergo counseling about raising a child that was not biologically hers (one of only 18 percent to do so),23 and urged her to consider whether she and Scott planned to tell the (not yet conceived) child—a topic they had at this point not even considered. Counseling done, they moved on to the donor selection, a process Megan found somewhat disconcerting. She had a choice between using the clinic’s own donors, about which she could see only very basic information, such as height, weight, eye and hair color, medical history, and a baby picture, or a donor from an egg bank or agency, most of which had extensive information online. Starting with the agency websites, browsing through pictures, biographies, and academic background, Megan developed her own criteria, focusing on the donor’s motivations, education, and physical similarity to herself. And then, like me, she reversed course. “I decided it was better not to choose on looks alone,” she explained, noting that the websites seem to encourage the tendency to look at the beauty queens. She and Scott opted for a clinic donor, specifying only that they wanted an African-American donor. Their first IVF cycle failed, and the lab, maddeningly, had a technical error that destroyed their frozen embryos. Frustrated but undaunted, they tried again, transferring two fresh embryos to Megan. They both stuck, and she found the pregnancy, while challenging with two, to be bonding. “When you carry them for nine months, you definitely feel like they’re yours.” She laughed. Megan rarely thinks about the donor eggs, other than to be grateful that they brought their beloved, mischievous twins into their family.

  I see a future in which people will not use sex to reproduce.

  Dr. Lee Silver

  11

  Louise’s Legacy

  The Business of Baby-making

  Fortunately for women like Jessica, Paula, Marcy, and me—as well as countless tenacious others—there has never been a better time to be confronting infertility. Technological advances make the previously impossible possible. Women with damaged fallopian tubes can conceive. Men with low sperm counts can conceive. Cancer patients can conceive. Gay couples can conceive. Egg, sperm, embryos, and now even mitochondria can be borrowed. The bounds are being pushed every day, enabling people to have their little “miracles”—those, at least, who have the means and access. For as we all learned, patients need not only grapple with a complex and evolving medical field, they must also learn to navigate a byzantine financial and regulatory landscape.

  The Fertility Industry

  Modern-day treatment of infertility in the United States and elsewhere is a multibillion-dollar industry, yet few participants—doctors as well as patients—recognize the extent to which patient care is shaped by this fiscal reality. Apart from the obvious financial connotations of the word, identifying infertility treatment as an “industry,” rather than a purely medical practice, has important implications for understanding treatment decisions; yet treating infertility is not strictly a commercial experience either. Unlike with most consumer transactions, no patient intentionally decides to enter the fertility marketplace, and few want to acknowledge being there. In my experience, as well as that of virtually all the women I interviewed, the descent into this new world is gradual and sneaks up from behind. Focused solely on the goal of getting and staying pregnant, those who find themselves in this marketplace rarely realize, at least initially, that the treatment of infertility differs in significant ways from the provision of many other medical services. At the start, most tend to approach it as they would any other health issue—assuming that there is a single “best course” of treatment and that their doctors will take their future health into account above all else before determining any course of action. Yet while many patients seek second opinions regarding surgery and the treatment of serious illnesses, it seems that the multitude of fertility patients, to the contrary, tend to follow the advice of one doctor, at least at first, and if it fails, simply move on to the next.

  When, very early in my journey, I was first prescribed Clomid to help me ovulate, like many other women, I simply took it as instructed. Despite unbearable headaches and no visible results, I continued to take it. Because my doctor prescribed it. When my high-priced fertility specialist later told me I needed to turn to IVF, despite the fact that I had conceived naturally three times, I eventually succumbed, suppressing strong reservations, because my doctor told me to. Although my insurance didn’t cover a single cent of my treatment—the first strong clue that I was stepping out of the boundaries of pure medicine—I wasn’t suspicious of protocol. It never occurred to me that some of the standard fertility protocols in place (for example, Clomid for six months, IUI for three cycles) may have been based in part on commercial interests, liability-protection, or common practice—and that there may have been little scientific evidence to support them.

  A patient is better served to approach fertility treatment options from the vantage point of an educated consumer. My own evolution from patient (blindly accepting medical advice from my doctor) to proactive consumer (researching the best practices and highest success rates globally) took many years. It was only after I experienced failure after failure that my attitude changed and I started to take control and gain the knowledge necessary to successfully navigate my own path to motherhood.

  Infertility treatment is, at its core, a medical practice. It is regarded as such in most countries of the world. It is practiced by medical doctors, who dispense hormones and prescription drugs, and often perform surgical procedures. In countries with national health services, such as the United Kingdom, Canada, Sweden, Australia, and many others, infertility treatments are generally covered, within limits, by their various national health plans. In numerous other countries, insurance companies are required to cover infertility as a medical condition, which it is.

  But in the United States, infertility treatment inhabits the gray zone: not entirely medical, and in many aspects commercial. It is dispensed primarily in for-profit clinics, often by doctors with ownership interests in labs, sperm banks, and egg-donation centers, as well as by distinguished university researchers who may also work in stand-alone for-profit centers. Insurance coverage is required to be offered in only fifteen states, and the coverage is often too limited in scope to see a would-be parent through to achieve the desired goal of conceiving a baby.1 In at least four of those states, insurance companies must cover fertility treatments only for married couples, and even then, only with the use of the husband’s sperm.2 Patients must steer their way through an unregulated and fragmented market in which clinics with potentially high-profit motives and inherent conflicts of interest face enormous pressure to increase their publishable success rates. The question must be asked: What impact is this having on the integrity of the science of fertility and on the women seeking treatment?

  Regulation, or Lack Thereof

  In 2018 in America, the landscape for combatting infertility is still in some respects the Wild West. Assisted reproductive technology (ART) providers—the fertility clinics, ob-gyns, reproductive endocrinologists, embryologists, and others involved in performing IUI, IVF, and other procedures—are largely unregulated, with far fewer restrictions than most medical practices, making it harder for patients to assess the safety and efficacy of treatments. Shockingly, in stark contrast to the panoply of regulations surrounding abortion, there is in fact only one specific law regulating treatment of infertility. The Fertility Clinic Success Rate and Certification Act, a lonely federal statute enacted in 1992 as a result of a Federal Trade Commission (FTC) intervention in reaction to false advertising by a fertility clinic, requires only that clinics practicing assisted reproductive technology inform the Centers for Disease Control and Prevention (CDC) of their success rates.3

  Of course, certain aspects of the provision of fertility services are regulated by federal laws and agencies charged with broad oversight of ge
neral operating standards, but there is no single governing body with the primary mission of overseeing infertility care. The Clinical Laboratory Improvement Act of 1988 (CLIA), for example, which was enacted to regulate the quality of laboratory services, established certain requirements regarding personnel qualifications, validation of tests, and quality-control standards. Implemented by the Centers for Medicare and Medicaid Services, the act also applies to assisted reproductive technologies and prenatal genetic testing. The FDA regulates drugs and devices used in IVF treatments, although it does not regulate the procedures themselves, nor does it oversee operations of fertility clinics. Some states, in addition to requiring medical and laboratory licensing, have adopted laws to govern the practice of gamete (egg, sperm, or embryo) donation and storage, mandating, for example, that facilities maintain acceptable equipment and storage conditions and institute tracking procedures for frozen gametes to ensure identification and minimize potential abuse.

  But apart from the general goals of assuring basic quality standards, unlike in the United Kingdom, Spain, Australia, and many other developed countries, there is no federal or state agency in the United States with the mandate to regulate the trickier aspects of infertility treatment: how many embryos may be transferred during IVF; how many children may be conceived from a single donor; how old can a donor be; the type of medical information that must be supplied to potential parents; delineation of the rights and responsibilities of surrogates and intended parents, among others. There is a veritable minefield of unregulated issues.

  In the face of this Swiss-cheese-style government regulation, the US fertility industry is largely self-regulating. The vast majority of fertility clinics are members of one or both of the two major professional organizations in the field: the American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technology (SART). To assure patients that their clinic meets quality standards, most reputable fertility clinics also seek certification from the Joint Commission, an organization made up of individuals from the private medical sector to develop and maintain standards of quality in medical facilities in the United States.