My Story of Infertility Overcome:
Insights and Turning Points That Led Me to Motherhood and More
Lorne, Rhonda, Max & Jeff Levy - Oct/99
I cannot remember a time in my life when I did not feel sharp pangs of maternal longing. Even when I was myself a child, when my pre-pubescent body lacked with certainty the power to reproduce, I knew that one day I would need to be a mother, to have a child.
It was not that I had a narrow vision of my life, for I have always been curious about my surroundings and determined to have a serious career. But I was certain of this from the beginning and I never once wavered on the point: my family would have the greatest power to define my life and fulfill me.
When my husband Jeff and I were unable to conceive naturally, the magnitude of my heartache and despair was immeasurable. Infertility was a crisis that threatened a gaping hole, and I lived in fear that my life would bear no resemblance to the one I had always imagined. The emotional impact of the constant cycle of hope followed by devastation was exhausting. I was deeply depressed, and spent many sunny Sunday afternoons lying in bed curled up in a ball.
Frantically, I engaged in the all consuming "baby chase" and the detached, clinical world of reproductive medicine appeared to be my answer. In other spheres of my life I was sophisticated and in control. But in this one I was desperate, vulnerable and easily enticed by hope. I took a blind leap of faith and surrendered to medical authority without the knowledge that would have enabled me to assess the quality of my care.
I now recognize my behaviour as being consistent with a common social phenomena experienced by many who are faced with infertility. It is not unusual for the best educated and savviest among us to feel numb, overwhelmed and confused. It is not uncommon to feel immobilized, to capitulate to medical authority and submissively follow directions. It is not uncommon to feel the need to be "the good patient," the patient who does not rock the boat with too many penetrating questions or demands.
In the early stages of my treatment for infertility, I was a classic example of "the good patient." Looking back today, I can hardly recognize the passive woman that I see. When I bought a car, I pored over the consumer reports before even setting foot in a car dealership. When I purchased shares in a mutual fund, I carefully reviewed its annual rate of return for the five years prior to the date of my purchase. And yet, with the stakes infinitely higher as I tried to achieve motherhood, the most profoundly important goal of my life, I was not a discriminating consumer. I neglected to thoroughly investigate the full range of my options, and used questionable criteria when choosing my medical care.
I experienced three failed cycles of artificial insemination and four failed cycles of in vitro fertilization. I wondered about the calibre of the laboratories we accessed for IVF and the wisdom of some of the clinical decisions that had been made. The turning point came when I suddenly understood that I could no longer rely on my physicians to guide me: they had a vested commercial and professional interest in promoting their own clinics, which I now suspected were not on the cutting edge. I understood too that if I did not become my own best advocate I might never have the family I so desperately longed for. And from that moment on I became a very different kind of patient. I became the patient who believed that education was the antidote to desperation and vulnerability, that education was power. I believed that if we were lucky, education together with sheer determination and the right medical care might help my husband and me become parents.
I began to spend night after night at the medical library carefully reviewing the studies, ensuring that I was aware of all of the most current technology. I learned how to interpret success rates with insight, and travelled throughout the United States consulting with the most highly regarded physicians at world-renowned clinics. I decided that I was entitled to ask pointed questions, and that my physicians were obliged to give me meaningful answers. And what I found surprised me. I discovered that these physicians had a palpable respect for my tenacity. I learned that they actually enjoyed discussing treatment with an empowered patient, and even took a special interest in my case.
Thankfully, this eventual change of attitude and empowerment impacted our destiny immediately and dramatically. Once I armed myself with the tools to assess the quality of a fertility clinic, and to properly evaluate the full range of our best options, we took a logical, well-reasoned approach to choosing the clinic where we would attempt our fifth IVF cycle. This fifth cycle resulted in the birth, on October 10th, 1996, of our twin sons, Max Solomon and Lorne Ezra Levy, for whom we are intensely grateful. These warm, loving, sensitive little boys are the very essence of my heart and soul, and not a day goes by that I do not reflect upon how close I came to not having them.
Although I was finally the mother I so desperately longed to be, I could not erase the horror of our long struggle from my thoughts. What troubled me most was the naiveté of my early assumption that I could place my faith in my physicians to guide me through the maze. I now understood that I had been handicapped because I did not know what I did not know: that there was an enormous disparity between the best and worst of the more than 400 fertility clinics in the United States, and that the vast majority offered low or only average odds for success with assisted reproduction. Unless a couple had the good fortune to find themselves in treatment at a superior clinic, they would be more likely to spend more time, more money, and to suffer significantly greater heartache than necessary. Reproductive medicine had become one of the most lucrative industries in medical history and its landscape was littered with dangerous landmines. The combination of medical entrepreneurship and patient vulnerability was a dangerous one, and the potential for infertile couples to spin their wheels endlessly was real. I understood that I could draw a direct line between my empowerment and the fact that I became a mother, and suspected that it was likely that had I turned first to the fertility clinic where I ultimately achieved success, we would have required no more than one cycle of in vitro fertilization to become parents.
In the early days of motherhood I was haunted by the shocking story of another woman's struggle with infertility. I met Tessa as we sat patiently in the waiting area of a local fertility clinic. I was drawn to her immediately, sensing her strength and intelligence even before we shared our first words. As we both struggled in our quest to become mothers, we became each other's one-woman support group, meeting weekly for lunch to share our pain.
Tessa's struggle was very different from my own. While it was unexplained infertility that prevented my husband and me from conceiving, Tessa and her husband had no trouble with conception. They were able to conceive almost every time they tried, but inevitably Tessa would lose the baby. When I met her she had already suffered the heartache of four miscarriages, and was working with a physician who was investigating their potential cause. He claimed to have ruled out everything, so Tessa proceeded to conceive four more times after we met and she suffered four more losses. She consulted with three more physicians who were known to have a particular research interest in pregnancy loss, and none of them could offer an explanation for her miscarriages. After eight losses, Tessa's desperation was at an all time high and she was about to try an unproven therapy that was very controversial. It was then that I learned about a physician who was well respected in the area of pregnancy loss, and somehow managed to arrange for Tessa to see him the very next week. This doctor was insistent on redoing all of the tests that her previous doctors had conducted. Tessa was reluctant as she was in her late thirties, and frantic to keep time on her side. The doctor would not negotiate and Tessa relented. His first priority was to rule out any abnormalities in Tessa's uterine cavity that might potentially have caused her miscarriages. Tessa went through the motions to satisfy him, and on a routine ultrasound he told her he thought she had a partial septum, an abnormality in the shape of her uterus, which clearly could have been the cause of the eight miscarriages. Tessa told him this was impossible, as her very first physician had conducted a hysterosalpingogram, an X-ray that could determine whether there were any abnormalities in her uterus. This new physician took a look at the films of the X-ray only to discover that Tessa had been placed improperly on the table, causing the picture of her uterus to be inaccurate. He surgically corrected the abnormality in Tessa's uterus and she immediately proceeded to have two consecutive full term pregnancies. The first of Tessa's two daughters was born only six weeks before my sons. On my first birthday following the birth of my sons, Tessa gave me a framed photograph of the two of us while pregnant, our swollen bellies touching as we faced each other, our smiles triumphant from ear to ear. Tessa's experience taught me about the importance of an obsessive compulsive, methodical approach to diagnosis. It convinced me that I could play a role in helping others get the medical care that would enable them to have children, and it gave me a feeling of gratification unlike any I had ever known.
And so it happened that not terribly long after the birth of my sons a fire was lit inside of me, a fire that inspired me to turn what had been a crisis of enormous magnitude into an opportunity to help others become more informed consumers of reproductive medicine. A corporate attorney, I added a second layer to my professional life when in 1998 I began a practice as an independent, unaffiliated fertility clinic consultant. I soon found this to be a labour of love and one of the most deeply fulfilling aspects of my life.
In private consultations (many by long distance telephone with couples living throughout the world), I empower my clients to make more informed and discriminating decisions about their treatment. I provide carefully researched information that is critical to their success, and that influences the way they choose their fertility clinics and interact with their doctors. At the conclusion of the consultations my clients make the same comment repeatedly: "Although we've been in and out of doctors' offices for years, this information was new to us. If only we knew then what we know now we would have done everything differently." Once my clients had the information that enabled them to make more educated clinic choices, it was striking how significant a proportion of them proceeded quickly to conquer their infertility, often after more years of misery and heartache than any couple should ever have to endure.
As my practise as a fertility clinic consultant grew, I saw that an appropriate referral could help couples who had been told their situations were beyond hope. Luna was thirty-seven when she and her husband Maurice found themselves in a position to start their family. I will never forget the state they were in when they consulted with me. Luna tried with all her might to hold back her tears, but she shook as she told me that her physician had advised her that due to an elevation in her follicle stimulating hormone (FSH) detected on day three of her menstrual cycle, it was clear that she suffered from "diminished ovarian reserve," a condition that would make it unlikely that Luna would be able to adequately respond to fertility drugs and produce healthy eggs. This physician told them that the only way they could hope to have a child would be through egg donation or adoption. Luna and Maurice asked me to help them get a competent second opinion. I knew that several of the most elite fertility clinics in the United States would echo the assessment that Luna and Maurice had already heard, and that if they heard this verdict twice they might give up hope of ever having a child that would be genetically connected to Luna. But I was also aware that there was a clinic of extraordinary quality that was more willing than most to help more challenging patients. I wasted no time in arranging for Luna and Maurice to consult with one of the physicians at this clinic. He agreed that their situation was challenging, but not necessarily in his opinion not entirely without hope. Luna was accepted into this program for in vitro fertilization with her own eggs. She stimulated reasonably well, yielding six eggs and on her very first cycle. Luna became pregnant and nine months later, she and Maurice became the parents of a healthy baby boy.
I was struck by the hundreds of bright, highly educated, sophisticated women in their thirties and forties who told me they had never been informed that there would be a downward trend in their reproductive potential as they aged. Others told me they had been aware there would be a downward trend, but expected it would become a serious concern much later than it did. I could easily relate to what my clients were telling me because, like them, I do not recall even a single conversation with an adult influence during my growing up or early adult years cautioning me to make decisions around marriage and career with an understanding of the inescapable realities of reproductive biology. In high school in the early seventies I did attend a class, which was called "Family Life Education," but its title was ironic as it focussed exclusively on ensuring we had an understanding of how not to have a family. My parents, who without question have always had my best interests at heart, devoted much of their energy to encouraging my academic career, and then later my professional development. I remember them saying often and with delight, "The world is your oyster. You can become whatever you want to become." It never occurred to my parents, my teachers, or even to my doctors, that if I wanted to become a mother, I needed to be educated about the harsh realities of my reproductive potential. And I believe it never occurred to them, because they themselves were ignorant of the facts. Again and again my clients would tell me they now realized they had been severely handicapped because they had made both life and treatment decisions without this knowledge and understanding. I saw that society had done a woefully inadequate job of ensuring a widespread understanding of this vital piece of information, and with each consultation I have grown more and more determined to become a crusader to get the message out.
My primary message is that once you decide to venture into the world of reproductive medicine, the single most important determination you will ever make is this: at which fertility clinic should we access treatment, and when? My goal is to encourage you to fight the impulse to succumb to feelings of vulnerability and desperation, and to avoid choosing your medical care in an emotional or random fashion. I will ensure that you understand the wide disparity between the best and worst fertility clinics in the United States, and help you become more sophisticated in your choices. I will urge a "buyer beware" attitude and demonstrate why you must take responsibility for when, how, and where you pursue treatment. In doing so, I will demonstrate a responsible and insightful approach to evaluating the world of fertility clinics and emphasize the importance of making well-reasoned choices and explain why your likelihood of having a baby will be greatly enhanced if you are made aware of and then access leading edge medical care from fertility clinics that have the clinical and laboratory expertise to maximize your potential for success. Finally, it will provide you with meticulously researched information about a carefully chosen group of top tier, cutting edge fertility clinics that are most worthy of your consideration. After you consult with me, you will be transformed into your own most discriminating and empowered advocate. My approach will enable you to save time, money, and heartache and significantly improve the likelihood that you will experience the joys of parenthood.
Although I would not wish infertility on anyone, I personally do not regret for one moment having had the experience. For although infertility felt like a curse at the time, it turned out ultimately to be a gift, one of my life's greatest blessings. In addition to deepening my understanding of what is most important in life, infertility also enabled me to better fulfill my purpose as a person; for had I not struggled desperately in my own quest to have a family, I would not have found an opportunity to play a small role in making the quest of other infertile men and women just a little bit easier. While it is difficult to believe it possible while you are feeling the anguish of infertility, it is my hope that one day you too will be able to consider infertility to have had (at least in some respects) an enriching impact on your life. From the deepest place in my heart, I hope that you will find your path to deep and loving relationships with healthy children who bring you unimaginable joy.
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Email: rhonda@rhondalevy.com
copyright © 1999-2005 Rhonda Levy
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