by admin
Generation I.V.F.
At age 50, I am an official member of Generation I.V.F., having grown up after the Pill and Baby Boomer feminists revolutionized women’s reproductive choices and lives. We watched as millions of American women infiltrated formerly closed-to-females professions, and as home and office politics, the economy, and relations between the sexes radically shifted.
My generation also came of age alongside reproductive technologies: in-vitro fertilization (I.V.F.), frozen sperm, donor eggs, and surrogacy. I vividly remember reading front-page stories about the first test-tube baby born in Britain (in 1978) and about the first donor-egg baby born (in 1984). These advances were so extraordinary that my girlfriends and I began to believe that almost anything would be possible by the time we were ready to have kids…that is, if we chose to have kids.
I can recite from memory the names and ages of the celebrities who first seemed to beat the biological clock: Photographer Annie Leibovitz (twins at 52), supermodel Cheryl Tiegs (baby at 52), actress Geena Davis (twins at 48). Now there are hordes more, and some of these have revealed they used I.V.F.: Mariah Carey, Celine Dion, Courtney Cox, J-Lo, and, it seems, just about every other 40-plus female in Hollywood.
Bombarded by these relentless endorsements for older motherhood, many middle-class, educated, Gen-I.V.F. women like myself started thinking, “Wow, science is finally beating Mother Nature.” We reassuringly told each other, “It’s okay to delay motherhood while we pursue our careers. If we run into trouble, well, there are always fertility treatments.” Science and technology were our New God.
My own fertility story has four chapters.
Chapter One: Ambivalent about motherhood and thrilled to be ensconced in a meaningful career, I married in my mid-thirties and five years later started trying to make a baby the old-fashioned way.
Chapter Two: a four-year odyssey into assisted reproductive technology (A.R.T.) (which 99 percent of the time means I.V.F.). With A.R.T., the sperm and egg are handled outside of the womb (A.R.T. does not include straight hormone therapy or intrauterine insemination). Most A.R.T. requires very expensive injections, via needles to the abdomen, thigh or buttock, aimed at controlling your body’s hormones and stimulating your egg production. Notoriously, they can also fuel horrible mood swings and alter your personality.
During the years I underwent I.V.F., I met women so addicted to the hope the science offered that they’d endured as many as 18 rounds of treatment. My husband Michael and I abandoned the I.V.F. treadmill after four failed cycles, including one emotionally devastating miscarriage and another in which my ovaries produced no eggs at all.
For the most part, this $4-billion-a-year biotech industry is not invested in providing appropriate patient education that can help women and couples determine when to cease treatments, or support them in coming to terms with the indescribably painful fate of their biological childlessness. Still reaching for the stars ourselves, Michael and I continued on to Chapter Three: The Donor Egg Phase.
At this point a third party was introduced into the sacredness of the conception process, deeply challenging not only our values, but also our core sense of identity. We talked endlessly about ethics, spirituality, and the excruciating realization that we were actually considering buying another woman’s eggs, commodifying her.
Still, sad to say, despite trepidation, disabling bouts of insomnia, and self-flagellation, our obsession to procreate prevailed. Slowly but surely, we became that thing: Fertility Junkies. We began working with a donor egg agency, spending endless hours online, often surreptitiously logging on at 3 a.m., addictively “shopping” for the perfect egg mother; maybe one who would look a little bit like me.
After several more months of tears and insomnia, we chose an attractive 21-year-old who then had to undergo rigorous testing. When the nurse finally called to report that this donor was infertile, we were stunned.
“Okay,” Michael and I told each other, “This is an omen from the universe telling us to stop.” But we didn’t. Instead we started fanatically trolling the Internet again. We found another seemingly good fit — a 28-year-old mother who had donated to another couple only six months earlier. The clinic synchronized our hormone levels and prepared her ovaries to generate quality eggs and my uterus to develop the kind of lining that an embryo (or two) wants to call home. But literally one day before the embryo transfer was scheduled to take place, much to our incomprehension and shock, the doctor called to inform us that none of our donor’s dozen eggs had fertilized.
“There is something obviously wrong with her,” he said, lending his industry’s own strange brand of support. “Given the drugs she was taking, she should have produced many more eggs and they should have fertilized. I would not recommend using her again, but I do hope you will try another donor cycle. You are a perfect candidate.”
At that point, maimed and almost immobilized by grief, I slunk into a depression that kept me in bed for months. Somehow, I don’t know how, we initiated Chapter Four of our saga: the path to parenthood through adoption. I felt intensely Jewishly-identified during this period, ruminating about baby Moses and all the women who collectively strategized to save him from death and facilitate his adoption: his sister Miriam (my namesake), his mother Yocheved, and his adoptive mother, Bithia, Pharoah’s daughter.
Michael’s and my seven-year-long journey to have a child ended the moment we laid eyes on our newborn son, Sammy. As he snuggled next to his birth mother in a hospital bed, a maternal force as great as a tsunami welled up inside of me, and I gave thanks that he had finally arrived through the spiritual cocoon of my long-recited prayers. At the same time, I couldn’t quite comprehend that he was actually “my son” and I was now “his mother.” In an instant, we all assumed new identities that would bind us together for life.
Like wide-eyed pioneers, Michael and I had ventured into a wildly unregulated and subterranean branch of medicine. Most of the information circulating about I.V.F. predominantly focuses on its successes; there is virtually no counterbalance to inform us about high failure rates, its devastating effect on couples, or its bioethical conundrums. So herein, abridged, are 10 things I wish someone had told me before I embarked on my ride through hell.
1. You Will Probably Be Physically and Emotionally Traumatized. I found that the side-effects of the drugs, the constant prodding and probing below my hips, and the repeated failures, miscarriage, and devastatingly dashed hopes brought me to the point where I sought treatment for post-traumatic stress disorder (P.T.S.D.).
A study by Allyson Bradow, Primary and Secondary Infertility and Post-Traumatic Stress Disorder, confirms that women who experience failed fertility treatments often exhibit symptoms of P.T.S.D.. Close to 50 percent of 142 participants in Bradow’s study met the official criteria for the disorder; that’s about six times higher than its prevalence in the general population.
Those of us who bump into age-related infertility end up confronting two tragedies: the loss of our deep primal desire to birth a baby and the realization that we guzzled the Kool-Aid: we built our entire “women-can-finally-have-it-all” adult life on an illusion.
2. Your Sexuality Will No Longer Belong to You. In order to endure the physical and emotional strain of multiple I.V.F. cycles, you will eventually detach from your body and your sex drive. This is almost inevitable, as the doctors will control, through drugs and technology, what used to be controlled by Nature.
By the time I reached The Donor Egg Phase, sex equaled stress. It meant needles and Petri dishes, stirrups and vaginal probes. It was associated with disappointment and guilt and pain. Most nights I cried myself to sleep.
3. You Will Blame Yourself. In 2012, the European Society for Human Reproduction and Embryology reported that the global A.R.T. failure rate was as high as 77 percent. In the U.S., treatments fail close to 60 percent of the time among women younger than 35, and 88 to 95 percent of the time among women older than 40. This glaring omission of information from most mainstream media results in women blaming themselves for failed cycles rather than understanding that this fragile science has consistently missed its mark two-thirds of the time or more since 1978.
In my case, as cycle after cycle failed, I buried myself in a tomb of self-blame so disabling that I was unable to work for one full year. It was my fault my ovaries weren’t producing enough quality eggs. It was my fault we waited too long. It was my fault we had a miscarriage. I was an expert when it came to contraception, but I was embarrassed about my ignorance regarding reproduction, and angry with myself for how blindly I entrusted doctors to work their magic in a laboratory. I was a failure in every way.
If I had only tried harder….
Fortunately, former infertility patients and advocates are beginning to talk about all of this publicly, and the first independent forum to crack open the myths and hidden realities of infertility and the power of science to reverse it, The Cycle: Living A Taboo, took place in New York City in September 2013.
4. The Absence of the Sacred Will Deplete You. Fertility clinics and their staff are focused on manufacturing embryos, not on counseling patients compassionately after miscarriages, stillbirths and negative pregnancy tests. I often wondered what the doctors and nurses thought about me, the human being, as I lay on the gurney, and when I eagerly signed up for another cycle only days after my miscarriage. Did they feel sorry for my desperation, which kept them employed? Hooked into stirrups, did I have a face, a husband and a life, or was I just another older woman trying to have a kid?
A few months after our second donor was diagnosed as being infertile, we finally, for the first time, sat in a room with other couples in the same situation. A minister’s wife told the tale of how she’d adopted four children whose mother could no longer care for them.
Only minutes into her story, the dam inside of me broke loose and a river of tears began streaming down my face. This was the first occasion since we’d begun the arduous baby-making process that we were communing with people who actually talked about the sacredness of the path toward parenthood. Never once during treatments had clinic staff even mentioned the beauty or spirituality of creating and stewarding new life.
5. Treatments Involve Health Risks. In a branch of medicine that is still very much experimental, I injected into my body whatever drugs the doctors thought might help me become pregnant. I am an educated woman, a researcher and writer by trade, a feminist, and yet I became an obedient guinea pig.
When I finally stopped treatments and was invited to join the board of Our Bodies Ourselves, I learned that there is scant evidence-based research about the long-term effects of treatments on women’s and infants’ health. Existing data does show an increased risk between certain fertility interventions and breast, ovarian and endometrial cancers, among other side effects, and a 26 percent increased risk of birth defects in I.V.F. babies. The common practice of implanting multiple embryos is known to pose serious health risks to mothers and infants, including pre-term delivery, low birth weights, and costly hospitalizations.
The effect of treatments on egg donors has been even less studied, yet we do know that side effects can include blood clotting, infertility, and ovarian hyper-stimulation syndrome, and in some rare instances, death. Potent drug regimens can create as many as 30 to 60 eggs in one cycle, as opposed to the solo egg a woman naturally produces during her period. (You can learn more in the film Eggsploitation and from the group We Are Egg Donors.)
On the positive side, there is now the Infertility Family Research Registry (ifrr-registry.org) that invites women going through A.R.T. to submit information about their health and that of any offspring. Of the roughly 500 clinics in the U.S., however, fewer than 100 have signed up to promote it.
6. Treatments Costs a Fortune. Be Prepared to Confront Your Privilege. One average I.V.F. cycle in the United States costs between $12K and $15K; a donor-egg cycle, $30K; and surrogacy anywhere from $75K to $150K. Around the globe, the greatest cause of infertility is untreated sexually transmitted diseases; these hit poor women the hardest. Needless to say, fertility treatments are largely unavailable to them.
Only 15 U.S. states offer insurance policies that cover fertility procedures, compared to Britain, Israel and many countries in Europe that subsidize some citizens’ fertility treatments. In Sweden, France and Italy, single women, and lesbians and gay men, are often barred from accessing them at all.
7. Fertility Clinics Are Big Business. Most clinic staff wear two incompatible hats: a medical one and a business one, so this means their advice might include steering you towards trying new technologies and drugs. Our reproductive endocrinologist told us honestly that our chances of I.V.F. success were low, but he also said, “It only takes one good egg to make a baby.” Michael and I were awash in yearning and denial; the doctor knew that. “New techniques and protocols are constantly being developed,” he said. “You just never know what can happen.”
The world’s first fertility company, Virtus Health, went public this year to the tune of almost half a billion dollars. Its CEO is quelling investors’ fears that improvements in A.R.T. might mean fewer cycles for clients. Uh-oh — dwindling revenues.
8. Fertility Clinics Are a “Wild West.” There is only one piece of U.S. federal legislation, loosely enforced, that requires clinics to self-report their annual success rates: the 1992 Fertility Clinic Success Rate and Certification Act. Apart from this, the industry operates below the public radar.
Activities that are stunningly unregulated include: implanting multiple embryos that may increase rates of success but also endanger women’s and infants’ health; engineering and selling anonymous embryos in the marketplace; prescribing off-label drugs that have not been approved by the F.D.A. for fertility use; marketing donor embryos or donor egg treatments to post-menopausal women; and offering expensive procedures––such as egg freezing — that have no proven track record in efficacy or safety.
The hype around egg freezing is a good example of the clinics going rogue. This newest technology is being marketed as though it’s as revolutionary and reliable as the Pill. I know older women who view it as a kind of magical insurance policy that will ensure their chances to birth babies safely when they are older. But there is virtually no long-term, evidence-based research to back up these claims.
9. Your Treatment Options May Exploit Poor Women. Patients wrestling with the pain of infertility and considering options like surrogacy and egg donation need to understand and connect the dots between their treatment choices and these women’s lives. Take a look at the recent documentaries Made in India and Show Me the Baby Bump, Please. Many surrogates, in India and elsewhere, are illiterate, extremely poor, and often not informed about what they’ve consented to. They can be separated from their children for up to a year, relegated to “surrogacy dormitories,” and, if their pregnancy fails, compensation and follow-up health care may be withheld. As health consumers, patients can plan an important role promoting greater health and human rights protections for all parties involved in reproductive technology treatments.
Commercial surrogacy and egg vending are booming businesses. As someone who has studied the link between poverty and gender, I would much rather see women and girls acquire economic security through better access to educational, constitutional human rights protections, and sustainable employment opportunities, not by a singular focus on their gonads and wombs.
10. You Will Dislike Yourself. Entering the world of A.R.T. will challenge you to reassess much of what you thought you knew about yourself. Long-held beliefs about right and wrong begin to flake off your psyche like old paint on a windblown house. Moral dilemmas about eugenics and cloning invade your dreams.
For me, deciding to use donor eggs was much more difficult than choosing I.V.F. I was averse to how unnatural it was, and I felt deep shame for my conspicuous conception, paying another woman to risk her health and possibly deplete her own egg reserves on my behalf. How and why do these young women decide to sell their eggs to someone like me? How does a donor agency determine that one woman’s eggs are worth $8,000, but another’s only $5,000? Blonde, svelte donors seem to get paid more than brunette, overweight ones. And Caucasian, Asian, and African-American eggs carry very different price tags. Ivy League egg donors with high S.A.T. scores and 36-24-26 body measurements have been paid as much as $100,000 for their eggs.
While searching for a donor, Michael and I were aghast at how judgmental we became. This one’s eyes are too close together. I don’t like her teeth. She looks bi-polar. She looks uneducated.
Like any protective parent, you want to be discriminating when choosing the genetic code and physical traits of someone whose egg will form half the D.N.A. structure of your potential offspring; that’s understandable. Still, it did not sit well. And even though we are now the proud and grateful parents of the most delicious little four-year-old ever, our A.R.T. ordeal may have scarred us for life.
—-
What’s redemptive for me now is my mission to reveal the hidden side of treatments, and to caution women intent on birthing babies to avoid making the same irrevocable decisions so many educated, middle-class women in Gen-I.V.F. made when we delayed childbearing. Since infertility often correlates with higher educational levels, Jewish women are the group that has been hardest hit. If you’re reading this, you doubtless know some of us. You may be one of us.
There’s a global epidemic of misinformation about the age when women’s fertility naturally declines and about the power of modern medicine to reverse this. If you have experienced treatments, or know someone who has, I invite you to cast off your silence and contribute to expanding an open and honest consumer-driven discussion about these life-altering technologies.
Miriam Zoll is an award-winning writer and author of Cracked Open: Liberty, Fertility and the Pursuit of High-Tech Babies, founding co-producer of the Ms. Foundation for Women’s original “Take Our Daughters To Work Day,” and a board member of Our Bodies Ourselves and Voice Male Magazine.