Conceivability_What I Learned Exploring the Frontiers of Fertility

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  Contents

  Epigraph

  Introduction

  1. From Here to Infertility: Frontline Infertility Treatments

  2. Finding the Yellow Brick Road: Navigating the Fertility Labyrinth

  3. Go East, Young Lady: The World of Complementary and Alternative Therapies

  4. You Always Remember Your First: The Ups and Downs of Pregnancy and Loss

  5. Baby Steps: Minimally Invasive Treatment

  6. The Big Guns: Moving on to IVF

  7. Understanding Modern ART: Key Aspects of Assisted Reproductive Technology

  8. The Dark Horse: The Silent Faces of Miscarriage

  9. Down the Rabbit Hole of Third-Party Parenting: Gestational Surrogacy

  10. When It Takes a Village: Surrogacy and Egg Donation

  11. Louise’s Legacy: The Business of Baby-making

  12. Pricing the “Priceless”: Big Money and the Finance of Fertility

  13. The Good, the Bad, and the Eggs: The Fundamental Debate About Egg Integrity

  14. Minding the Gaps: Reflections on the Future of Fertility

  Epilogue

  Afterword by Dr. Joel Batzofin

  Acknowledgments

  About the Author

  Notes

  Index

  For Richard, Alexandra, and William without whom my life would be inconceivable

  In Loving Memory

  Dorothy Gadasin Freedman

  aka GGM

  A terrific woman of extraordinary strength

  who waited until her ninety-seventh year for the arrival

  of her youngest beloved great-grandchild

  Caryn Katkin Pally

  Mother, daughter, sister, wife

  who believed in family

  and the power of sibling love

  Elizabeth and Walter Wawrzyniak

  who overcame inconceivable obstacles

  to raise their children with unconditional love

  and instill the belief that anything was possible

  (Nana korobi ya oki)

  Fall down seven times, stand up eight.

  Japanese proverb

  If opportunity doesn’t knock, build a door.

  Milton Berle

  Introduction

  “If you have to write a book, why can’t you write a book about recipes, like how to make cookies?” asked my then five-year-old daughter, with her impish little grin.

  I scooped out the dough onto a baking sheet, smiling. “Because I want to write a book about how to make babies,” I answered, “so that other parents can have wonderful babies like you and your brother.”

  Alexandra looked at me, her striking green eyes wide with indignation. “I am not a baby,” she cried.

  “You know what I mean,” I replied. “You were a baby.”

  “But having babies is easy,” Alexandra declared. “Everybody has babies.” She twirled around on her toes, practicing to be a ballerina. “When I grow up, I am going to have a girl and a boy. An older sister and a younger brother. Sarah and Henry.”

  “Just like that?” I asked.

  “Just like that.”

  I had thought so too. Like Alexandra, I used to believe I would grow up and get married and have two children, one boy and one girl, just like my parents did. Just like that.

  I never thought for even a second about the possibility that it might not happen. Until the time came when I actually tried to get pregnant, my only pregnancy concern had been ensuring that it didn’t happen accidentally.

  I looked at my beautiful daughter practicing her ballet steps in the kitchen and, not for the first time, marveled at her very existence. If she only knew the amount of time, energy, and money—not to mention the physical and emotional ordeal—that her father and I had gone through over the last decade to create her and her brother.

  I never could have imagined that my quest for children would ultimately look like this:

  Seven miscarriages

  Eight fresh IVF cycles

  Two frozen IVF attempts

  Five natural pregnancies

  Four IVF pregnancies

  Ten doctors (four of whom told me to give up trying)

  Six countries

  Two potential surrogates

  Nine years

  $200,000

  That’s my recipe. And now my husband and I have two beautiful, healthy children. One boy and one girl. Just like that.

  * * *

  I am an accidental fertility expert. I did not go to medical school, and did not, in my college and graduate years, prepare to devote myself to helping other women, let alone myself, get pregnant. Fertility was not something I ever thought about, until confronted with years of “trying” and the devastating pain of my first miscarriage—sadly followed by six additional miscarriages and almost a dozen failed IVF attempts. Yet I surprised even myself in my absolute, unshakable refusal to take no for an answer. In the face of overwhelming challenges, I gradually undertook my own quest to find solutions.

  In so doing, I was willing to sacrifice a lot—too much, some might say, and some did. I submitted my body to punishing rounds of fertility treatments of every kind. I was willing to spend every cent of our life savings. I saw doctors at top clinics in six countries—the United States, the United Kingdom, Switzerland, Germany, the United Arab Emirates, and Russia—and educated myself on state-of-the-art Western practices, as well as ancient Eastern and traditional approaches to overcoming infertility. I tried intrauterine insemination (IUI), in vitro fertilization (IVF), intracytoplasmic sperm injection (ICSI), preimplantation genetic diagnosis (PGD), and in vitro immunoglobulin (IVIG). I worked with egg donors and surrogates, and completed an adoption home study. I drank Chinese herbal teas, served as a cushion for an uncountable number of acupuncture needles, and took a variety of homeopathic remedies and tinctures derived from Germany to the Arabian Peninsula. I wore a fertility necklace, touched a fertility stone, and sat under a fertility tree. Alternately a fan and a skeptic, and ultimately a realist, in my 3,285-day crusade to complete my family, I left no stone unturned, and I opened my mind to paths previously unknown to me.

  I know I must sound like a zealot. I didn’t start out that way. I was just a stubborn woman who wanted to have a baby, who wanted to understand why she was having difficulty, and who wanted to fix whatever was causing it. What was happening in my body? Why couldn’t the doctors answer my questions? If there had been an explanation—a credible explanation—for what was wrong, I might have accepted it and moved on. But I had been trained as a lawyer, and I thought like one, and the reasons I was given didn’t make sense to me and didn’t hold up under interrogation. Didn’t modern medicine have a way to fix what were described as commonplace problems?

  Each problem I encountered had a simple, doctor-prescribed solution. I’d try the simple solution, and it worked. But I still didn’t have a baby. We’d then discover a second problem, and I’d try a second solution, and it worked too. On and on it went. New problems, new solutions. I followed each prescription to a tee. But I still didn’t have a baby. A
fter multiple miscarriages and four years, instead of satisfactory explanations, there were only pieces of a puzzle that didn’t seem to connect. So I did what lawyers do. I looked for answers in the facts.

  I talked to doctors and researchers, communicated with other women with fertility issues, and read anything and everything available on the topic, whether written for medical professionals, laypeople, or patients. I transformed from an ardent believer in following doctors’ orders to an active advocate for myself. Gradually, and somewhat unwittingly, I began to take over the management of my own case. Sometimes I knew as much as or more about my problems than my doctors. Instead of accepting the word of one doctor, I aggressively consulted with multiple doctors to create a more complete picture. I experimented on my own body with numerous mainstream, alternative, and complementary treatments.

  In my elusive, and obsessive, quest for a baby, over the course of nine years I explored every conceivable—and inconceivable—path, including not only most forms of assisted reproduction but also third-party parenting (surrogacy and egg donation) and adoption.

  When I was trying to conceive, there was plenty of material about IVF and how it works, but it was rare to find good advice on next steps when it doesn’t work. And though there were books on coping with miscarriage, I couldn’t find any on how not to miscarry.

  Shockingly, it was not until the final stages of my journey that I learned that there were different perspectives—indeed, entirely different philosophies—on infertility treatment that might have shortened my journey. Doctors in other countries had varied approaches to infertility based on their markedly different perspective on egg quality—a major, if not the primary, culprit in failed pregnancies. It was also not until the end of my quest, in 2010, that I understood the extent of the differences between basic scientific research, the protocols of the majority of doctors treating infertility in the United States, and those used elsewhere around the world.

  After nine years of seeking fertility advice and treatments, still trying to build our family, I sat in a spare, white medical examining room in a yellow house in the outskirts of Moscow, and was abruptly informed by a fast-talking Russian doctor that, in her view, the very treatments I had been pursuing for years as “the answer” had likely hindered rather than aided my chances of having a healthy baby, or any baby at all for that matter.

  * * *

  Fertility, like life, is complex, yet we usually consider it in the most simplistic fashion. We may not all be able to go to Harvard, or become president of the United States, but we can all grow up to have a family, can’t we? In fact, from our teenaged lives onward, we are taught that we are likely to get pregnant any time we have unprotected sex, as long as we are not too old. For as we age, we are told, our chances of conceiving decrease as the forces of time take their irreversible toll on our eggs.

  Doggedly trying to fulfill my desire to become a mother, I pursued methods consistent with this narrative. But in that clinic in Moscow, I learned that the narrative was at best oversimplified and not necessarily in line with the evolving science relating to egg and embryo quality. The doctors in Russia raised new, fundamental questions. What if, contrary to common Western medical belief, egg quality can be improved over time, not just left to degrade? What if our immediate environment affects the chromosomal makeup of our unborn children? What if large doses of fertility drugs, as commonly prescribed by most American fertility clinics, are not the most effective path for some of the fertility challenged among us?

  Eventually, my husband and I found our way to having two biological children—the first conceived in New York following a traditional Anglo-American IVF protocol under the care of a South African–born doctor, the second conceived in Russia using a lower-dosage protocol after US specialists told me to give up trying—both born in the United Kingdom. Based on the knowledge I acquired along the way, I became convinced that it should not have taken so long.

  * * *

  The infertility problem in America—and much of the Western world—is large and growing. In 2016, fertility rates in the United States reached an all-time low.1

  Every year, more than seven million women in the United States alone experience trouble conceiving or maintaining a pregnancy; that’s more than one in eight women and one in six married couples.2 While this book stems from and reflects my own quest for motherhood, the challenges and obstacles I faced are shared by so many. More than one million women a year in the United States alone seek medical help for their infertility, and at least 10 percent of all American women seek help at some point in their lives.3 In this book, I will introduce you to some of them.

  The insatiable drive to have a baby, paired with the steady rise in infertility, has set the stage for explosive growth in the fertility “industry,” which is, as the word implies, as much a commercial endeavor as it is a medical practice. In addition to its stated objective of helping patients have babies, it is a business strongly influenced by other factors—clinic success rates, profits, and “the tyranny of the orthodoxy” among them. It is also a business in which the “customers,” desperate for a baby and largely lacking a medical background, tend to optimistically and unquestioningly follow the advice of their doctors or fertility clinics—if they can afford such help or are fortunate enough to have insurance coverage for it.

  My journey raised many questions. Why is IVF in America the most expensive in the world, but not necessarily the most successful? How do doctors and clinics define “success,” and how can one be sure that the success rates clinics report are accurate (and comparable)? What are clinics in Russia and Israel and other countries with higher success rates doing right that many clinics in the United States and the United Kingdom are not? Why do many, if not most, US clinics prescribe higher levels of drugs for longer periods of time than low-dosage protocols used successfully in many other countries? Why are the “ethics” involved in reproductive technology so inconsistent (at best) and ignored (at worst)? What are the health risks of the various treatments, and, underlying all these questions, why are key aspects of fertility treatment unregulated in the United States? Finally, and perhaps most critically to evaluating paths to success, is egg quality influenced, for better or worse, by external factors, and if so, what can be done about it?

  They were questions without easy answers. So I set out to answer them. Initially driven by the desire to discover the solution to my own fertility issues, I am now driven by a desire to share what I learned with others struggling to have their own children, and anyone else interested in understanding and navigating this challenging landscape.

  I cannot pretend to know the solution to everyone’s infertility problems. But I have learned how to ask the right questions. I have learned that there are varied perspectives. I have learned that the American way is not the only—or necessarily the best—way for all women. I have learned that individuals need to become their own medical advocates and push for the very best care available to them. I have gained a wealth of knowledge about the medical, legal, financial, and emotional terrain involved in trying to have a child, both domestically and internationally. The information and insights I have obtained may help others who do not have the luxury to spend so much time and money searching the world for best practices. Because I was fortunate enough to be able to seek advice from a wide variety of medical professionals around the globe, I have benefited from state-of-the-art knowledge that might help others have a child more easily—specifically, evolving knowledge about the ability to improve egg quality, therefore radically improving the odds of healthy embryos and healthy babies.

  Ever since I had my children, I have been helping friends, and friends of friends, and cousins of friends all over the world to conceive and carry their babies. My husband calls it my “side practice.” Playing a role in any way toward helping would-be parents bring a baby into this world is the most gratifying thing I’ve ever done. Strikingly, these families did not need vast resources or an ability to trave
l the globe to benefit from my knowledge. To the contrary, many of the families I have advised have never left their hometown, and others have traveled to places in which treatment is in fact significantly cheaper than in the United States.

  At its core, Conceivability represents a mind-set: a willingness to reexamine the fundamentals of our fertility practice; an ability to imagine differing conceptions of conception, whether in diagnosis, treatment, or general perspective; an acceptance of the idea that there are ways of bringing a child into the world other than the fairy-tale path we all imagine. For I have learned that options nearly always exist, and the dream of having a family should not be left on the doorstep of a fertility clinic.

  There are many women and couples who walk on this journey. I wrote this book to let them know their experience is not isolated, and they are not alone.

  Houston, we have a problem.

  Apollo 13

  1

  From Here to Infertility

  Frontline Infertility Treatments

  When Richard and I got married, I was thirty and he was thirty-five. We are both big planners, and along with organizing our wedding and honeymoon, thinking about where we wanted to live now and in the future, and picking out colors for our new house, we had negotiated the kid thing at length well before the wedding. Two kids, not right away, but not too delayed either. I imagined we’d be a foursome by the time I was thirty-five, or shortly thereafter. I was a lawyer, working for the Washington, DC, office of a big Wall Street firm. Richard was a fund manager for an emerging-markets private-equity firm. We both worked a lot, traveled a lot, and had more than our fair share of fun. It was important to us that we have plenty of adventures together before our two kids arrived.