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InFocus
Fall 2004
Message from the Executive Director
The Art of the Game Plan
by Pamela Madsen
The curious thing about those of us who need
an assistance to have a child is how fundamentally optimistic we are.
The battle to reproduce is bruising. But we are surprisingly resilient, bouncing back from let-down after let-down to take another run at family-building. When we sign on for fertility treatment, we wind up living extemporaneous lives. We improvise schedules, adapt to the relentless uncertainties of testing, monitoring, procedures, the meds and their side-effects. We turn on a dime to seize unexpected opportunities motivated by the vision of the babies who we believe, at our core, are going to result from our dedication. If only we keep trying...
The thing is we've all got our limits.They could be social or psychological, emotional or physical, medical, or financial. Or, most likely, (d) all the above. Because reproductive technologies, while remarkable, are far from a sure thing, the only guarantee is that treatments will tax you on every level. But you can minimize the anxiety and ART-fatigue. You can anticipate possible problems, treatment alternatives and limits. You can exert a significant measure of control over your family building destiny and emerge from your experience with your life-affirming optimism intact. What you need is a game plan, a blueprint, a road map—whatever you want to call it—based on your individual situation, your expectations, your tolerances, and your ultimate goal.
Now I know this sounds like a no-brainer. If you're like the rest of us involuntary passengers in the infertility boat, you talk about the obstacles to conception or successful pregnancy all the time. You do the research and have discussions with your ob-gyn. Maybe you even see a specialist, are productive endocrinologist, orurologist. What we're suggesting here is that you go beyond those conversations, readings and Internet browsings. We're urging you to get specific about the range of possibilities you're willing and able to confront in the near and, especially, the long-term.
You can't overestimate how important that long view is in helping you to achieve a positive outcome, whether you ultimately have a fully or partially genetically-linked offspring, an adopted child or no child at all. Contemplating the permutations, staring down potential disappointments before you begin or early in your fertility treatment, and drafting an outline of response and action options is a reference point to sanity when you're feeling most vulnerable.
Perspective
How many of us have been defeated by that one cycle on which we pinned all our hopes? How many of us have quit treatment too soon or stayed too long or banked on procedures that were doomed to fail because we were hostage to unrealistic assumptions? How many of us looked at ART through the prism of pragmatism so we were grounded and ready to move forward in a logical fashion?
The truth is most have us are caught short by the inevitable twists and turns of the reproductive quest. We wind up making critical decisions without forethought, after we've been throughthe mill—feeling so raw and drained that cool-headed, informed decisions were as rare as the Hope Diamond.
Hence there is the indisputable need for a framework that sketches in some detail the arc of your treatment from beginning to end. It's a plan you develop in close and honest collaboration with your partner and your doctors. You'll know ahead of time how many months of clomid orgonadatropin injections before you move on to the next step. What is the next step for you—intrauterineinsemination or IVF? How many IUI or IVF cycles make sense given your age, your personal history, bank account, and stamina?
Your physician, the one in whom you've placed your trust, can be an invaluable resource and guide. "I talk about [a plan] with every patient on every first visit," remarks Dr. David Adamson in Palo Alto, California. "I ask them to approach this from cost-benefit analysis."
By that, Adamson means much more than finances, although that's part of the calculus as well. He means examining the "cost of going through treatment multiplied by the chance of success," including your personal values, what outcomes are acceptable and what aren't, and health risks associated with various treatments that you're willing to take and those which you aren't. "Patients should be very specific," says Adamson. "And the doctor's job is to tell them what the chances of success are," given the patient's age, time, money and their cost-benefit analysis. (See "How to Talk to Your Doctor about Your Treatment," p.12, for Adamson's full explanation of the cost-benefit approach.)
Having a plan of scope is scary, too. It acknowledges that things might not turn out as you hope. "People are very reluctant to have a far-ranging plan,"observes Dr. Joann Galst, a New York City-based psychologist. "They don't want to think about the possibility it won't work. But if you go into a treatment cycle with a plan and it doesn't work, you can readjust." Galst, who runs The AFA's new Fertility Coaching groups, says that the strategic outlook allows you to talk with your physician about what you might do differently both in the short term and in the long term.
"It is so important to align all your expectations with the situation you've been thrown into with your spouse and medical team," says Kristen Magnacca, author of Girlfriend to Girlfriend: A Fertility Companion and Love and Infertility. From her own experience, she knows that reproductive "failure upon failure" can feel like an endless battle for which you don't have the fighting skills.
"A fertility game plan makes you feel there's a beginning, middle, and end," says Magnacca. "Grab a piece of paper and sit down and talk about things you never thought about. Are you open to donor gametes or a surrogate mother. Think about timelines? What about adoption?"
Magnacca also asserts that this is a starting point and that "you have to have the ability to change when you get new information. It was a constant negotiation between my husband and me. It may not turn out the way you planned it, but you will have a family through ART. It may be just the two of you but you will have a family." (Please turn to p. 25 "The Power of a Simple Piece of Paper The Fertility Game Plan: Taking Back the Control" for Magnacca's profound insights and wonderful recommendations. –Read Article.)
While you're in this contemplative, honest mode you should factor in the ethical issues embedded in many of the treatment options you're checking into. Some are obvious: Does in vitro fertilization square with your religious beliefs? How would you handle any embryos remaining after you've completed your treatment? Some issues are subtle, even if the consequences are not. As Dawn Duncan points out in "Talking to Your Physician about Ethical Dilemmas" (please see p.9), the spectrum is broad, including the number of embryos transferred to the use of Pre-Implantation Genetic Diagnosis and everything in between. Just know that however you resolve any of these questions you may encounter, these lifetime decisions are personal. Ultimately, the only important thing is that you are secure and comfortable with your choices.
Practical Matters Matter
For many couples, infertility treatment begins and ends with an ob-gyn. It may be that a reproductive endocrinologist isn't accessible because of geography. Or it may be that your insurance doesn't cover assisted reproductive technologies and the out-of-pocket costs are too much to bear. That doesn't mean the end of reproductive hope because a well-trained gynecologist can do a lot. In this issue of inFocus, you'll find two articles ("TheOb-Gyn's Approach to Infertility, p.6; and Advice from a Reproductive Endocrinologist, p.7) that explain what a Gynecologist can responsibly do and the limits of the practice before a specialist becomes necessary.
While we're on practical matters, let's talk about money. Some of us have a lot of it; most of us don't. A few of us have insurance that includes some infertility coverage, even a few IVF cycles. Most of us don't. Whether we have cold cash or a decent policy plays a defining role in the pursuit of family. When drawing up your ART blueprint, think about how much you can spend on each treatment and still have enough to move to the next step if necessary. Bear in mind those next steps may eventually include the costs of oocyte donation, surrogacy or adoption. There is some financial relief available if you explore shared risk or refund policies offered by Integremed and Assisted Reproductive Care. For a clear explanation of how this works, check out "Are There Ways to Pay for Treatment when Insurance Doesn't?" on p.18.
How you spend your money becomes even more important if you do succeed in having a child. They are expensive to raise, so if you're going through in vitro fertilization you've got to think about how many embryos you will allow to be transferred. Obviously this requires a candid discussion with your RE about your specifics, but entering that conversation armed with up to date medical information gives you an advantage. Keep in mind that the understandable need to maximize the chances of success can cloud judgment. But write it down to remember that what we all want, doctors and patients alike, is a healthy singleton. For those on-the-ground insights, see "How Many Embryos Should We Use in Embryo Transfer?" (p. 15) by Dr. Lynette Scott.
Naturally all of it causes stress that's only compounded by the underlying anxiety of having trouble procreating in the first place. Understanding and managing nerve-jangling life disruptions of dealing with infertility should be integral to your blueprint. Dr. AliDomar, Director of the Mind/Body Center for Women's Health at BostonIVF, whose expertise is in the mind/body connection and infertility, is quite clear that stress and depression have a profound and negative impact on reproduction. In a Q&A on p. 22, Domar sheds light on stress and what to do about it.
Keep Your Eye on the Ball
The long view is the completion of your plan and the end point is different for everyone. If a biogenetic child doesn't result from your treatments, many people will choose to explore the other avenues open to us to build families such as third-party reproduction, gamete donation, surrogacy, gestational carrier, and adoption. They may choose to build an adult-only (child-free) family.For some people, these options are at the top of the list when they learn they're infertile and spend the time and energy to really think about what they want in and out of life.
With this issue of inFocus, The American Fertility Association hopes you'll be inspired to get that blueprint drafted. It's something concrete, something to hold on to, and something that could give you a little peace of mind when that seems as rare as the Hope Diamond. If you need more information or help, just call us or log on. We're with you all the way.
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How many of us have been defeated by that one cycle on which we pinned all our hopes? How many of us have quit treatment too soon or stayed too long or banked on procecures that were doomed to fail because we were hostage to unrealistic assumptions? How many of us looked at ART through the prism of pragmatism so we were grounded and ready to move forward in a logical fashion?
The long view is the completion of your plan and the end point is different for everyone, If a biogenetic child doesn't result from your treatments, many people will choose to explore the other avenues open to us to build families such as third-party reproduction, gamete donation, surrogacy, gestataional carrier, and adoption. They may choose to build an adult-only (child-free) family. For some people, these options are at the top of the list when they learn they're infertile and spend the time and energy to really think about what they want in and out of life.
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