Taking Baby Steps. Jody Lyneé Madeira
and productive ways. Pamela Foohey and Rachel Guglielmo read and commented on the entire manuscript—a task beyond the boundaries of friendship. June Carbone tirelessly fielded questions throughout and provided invaluable remarks on drafts. Basia Andraka-Christou helped me to untangle research findings and also provided excellent draft contents. Debra Unger read drafts and talked me through some tough parts, and Laura Helper-Ferris delivered top-notch developmental editing. Hannah Eaton provided excellent research assistance. I would also like to thank (in alphabetical order) Susan Frelich Appleton, Gaia Bernstein, Naomi Cahn, I. Glenn Cohen, Susan Crockin, Judy Daar, Dov Fox, Michele Goodwin, Jim Hawkins, Kimberly Krawiec, Seema Mohapatra, Dara Purvis, Rhadika Rao, Rachel Rebouché, John Robinson, and other participants in the “Baby Markets” conferences over the years. Last but not least, I’m so thankful for my colleagues at Indiana University Maurer School of Law, whose constant curiosity, support, and engagement over the years has helped me to fill a scholar’s shoes.
Prologue
Few topics are as compelling or contentious as how we create families—including reproductive decisions involving adoption, abortion, and reproductive medicine. Assisted reproductive technologies like intrauterine insemination (IUI), in vitro fertilization (IVF), and surrogacy generate particular controversy. Just as we make assumptions about many other “hot” issues, we often assume that people actually make or should make reproductive decisions in certain ways, or to achieve certain outcomes. One of our conventional assumptions is that emotions overwhelm patients and often hamper decision making. From this vantage point, emotions allegedly make patients more vulnerable, and it’s dubious whether they can be trusted to make family-building decisions. Another conventional assumption is that doctors’ profit incentives negatively affect their treatment decisions, prompting uncertainty over whether medical professionals can be trusted to put patients over paychecks. Finally, we assume that informed consent doctrine and documentation provide adequate protection against both strong emotions and predatory providers. But there are two problems with these assumptions: we confuse them with the truth, and we’re often wrong. When we’re wrong in the reproductive context, our mistakes have grave consequences for millions.
Taking Baby Steps asks readers to rethink conventional assumptions about how patients and their medical professionals collaborate in conception, allowing hundreds of men, women, and reproductive experts to explain in their own words how they negotiate key stages within the infertility experience. It is about infertility’s associated emotions and stereotypes, and how they influence when and in what ways the public and professionals think about fertility treatment, decision making, and the meaning of consent. It is about the impact these emotions and choices have on friendships and marriages, how patients’ friends and family sometimes don’t understand or grow weary of discussing infertility. It is about how women in particular may face loneliness and stigma in the shadows of disempowering popular stereotypes of the “desperate” or “demanding” woman battling infertility. It is about women and men who turn to fertility professionals for emotional support as well as medical care, and about the enduring treatment partnerships they form that motivate patients to appear educated, cooperative, and in control, and spur doctors to inspire and be worthy of patients’ trust.
Finally, it is about the legal framework that protects both doctors and patients addressing infertility. Relationships that progress to treatment trigger the safeguards of informed consent, a ritual involving documentation, explanations of procedures and risks, agreement to a plan of action, and signatures. Though experts believe (at least tacitly) that consent documentation diminishes medical paternalism and exploitation, patients experience it as legalistic, bureaucratic, generic, and cold; they prefer informative and personal conversations with providers. Though the vast majority of patients affirm they have read and understood these consent forms, they dislike forms that apparently protect doctors over patients. Instead, they find solace in the broader treatment relationships in which the acts of informing and consenting take place. Thus, this book attempts to turn the infertility experience inside out, exploring how women, men, and fertility professionals together negotiate infertility’s rocky terrain and navigate the personal, medical, and ethical minefields inherent in creating life and building families—and move forward in the event of defeat.
•••
I’ve experienced these treatment relationships and informed consent processes—and unexpected consequences—firsthand.
It was early (very early!) on a morning in mid-March 2007, a few weeks after my partner, Matt, and I had undergone IVF and transferred back three three-day-old embryos. In a fertility clinic on the outskirts of a major northeastern metropolis, I reclined on an examination chair resembling a dentist’s, only with hair-raising equipment at my feet. In the sonographer’s hands, an ultrasound wand shifted back and forth like an automotive stick shift, seemingly going from first to second gear, then back to first again, looking for the pregnancy that bloodwork had confirmed two weeks before. First and second gear were both fine with me—I feared being stuck in neutral, or, now that I was finally pregnant, being thrown abruptly into reverse.
“I see two heartbeats,” enthused the ultrasound technician from somewhere near my feet.
This revelation caused my heart to temporarily relocate to my throat.
“I see another gestational sac down here, but there’s nothing in it,” the sonographer continued.
“What does that mean?” I asked.
“Oh, that happens when one embryo starts to implant in the uterine lining, then stops developing,” the sonographer explained. “It’s quite common.”
“Twins!” I enthused to Matt some moments later, after I’d been reunited with my clothing. We pored over the ultrasound pictures we’d received. Each showed what looked like three black birds’ eggs: gestational sacs, two of which had strange lines we’d been told were “fetal poles,” the first measurements of our nascent offspring. The third was a black hole, a realm of mystery that, honestly, we ignored in our obsession with our twins. I still couldn’t believe I was pregnant, but at the same time wasn’t surprised to be expecting multiples. One week after our embryo transfer, a home pregnancy test had glowed positive seconds after I took it, and I’d been feeling breathless and dizzy for two weeks. Two weeks post-transfer, my fertility clinic administered a blood pregnancy test measuring the level of hCG, or human chorionic gonadotropin, the “pregnancy hormone” that embryonic cells generate after the embryo implants within the rich uterine lining. My results were extremely high; while the clinic expected a viable pregnancy’s hCG levels to exceed 100 mIU/ml, mine had rocketed to 725 mIU/ml.
“Why don’t you go in to work, hon?” I said to Matt, who had a long trek back to his office. “The important part was the ultrasound—I’ll stay here to meet with the doctor and go in to the city after that.”
“Are you sure?” he asked. I nodded.
“Okay,” he agreed. After a final hug, he left the office, and I sank into a chair in the waiting room and stared in joyful disbelief at my ultrasound pictures until I was called back to see my reproductive endocrinologist, or RE—a fertility specialist. Though I calmly seated myself before his desk, I really wanted to throw myself into his arms.
“Sooooo …” intoned my RE. I beamed in anticipation.
“Twins!” I exclaimed, awaiting his response.
But my RE’s words were far from the congratulatory statement I’d been expecting. “Triplets, actually. Two viable fraternal twin embryos, and a third gestational sac. We’ll have to keep a close eye on that one.”
•••
When Matt and I first considered having children, we never imagined needing fertility treatment. But how many of us do? I knew my mother had had trouble conceiving me, enduring several miscarriages. But I was healthy, in my late twenties, and in great shape. Yet, here I was. The problem wasn’t getting pregnant. In fact, my problems began after I miscarried my first pregnancy shortly before Christmas in 2005. When bleeding signaled that our baby was endangered—and our hopes and joy along with it—I was frantic, especially after learning there