Infertility: A Nobel Prize in Medicine for IVF Pioneer!

There is no question that the perfecting of in vitro fertilization has revolutionized treatment options for millions of infertile people world wide. Today the Nobel Prize in Medicine was awarded to Dr. Robert G. Edwards who, with his now-deceased colleague Dr. Patrick Steptoe, spent years perfecting the IVF procedure while battling controversy, lack of institutional funding and criticism on ethical and religious grounds. For those of us who have faced our own infertility struggles, it becomes easy to bask in the glow of this belatedly-awarded Nobel Prize. Drs. Edwards and Steptoe demonstrated more than medical brilliance in their work together, they also set a high bar for unwavering determination to overcome the many-pronged resistance to their scientific breakthroughs.

The celebration of the birth in 1978 of Louise Brown, the first IVF baby, was the beginning of a revolution in infertility treatment, just as that very birth was met with intense criticism of IVF as subverting the natural order of how conception occurs. Ultimately medical follow-up on IVF babies demonstrated that the IVF technique is safe and does not pose a risk to the healthy development of IVF babies. And most criticism, except that of the Roman Catholic Church, has melted away as some four million babies worldwide have been conceived, to the joy of parents who considered IVF to be their last hope for pregnancy and parenthood. IVF is now used in 3 percent of all live births in developed countries.

Since those of us who have grappled for years with infertility often come to feel singled out for unwarranted reproductive distress, I thought readers of this blog might be interested to know a bit about the multi-pronged battles waged by Dr. Edwards and Steptoe (Dr. Steptoe, who died in 1988, is not being named as a co-recipient of the Nobel Prize, as it is not awarded posthumously). My empathy for their ordeal is only surpassed by my gratitude that ultimately they triumphed so magnificently!

Medically, Edwards and Steptoe did their work in England, devoting over 20 years to solving problems related to getting eggs and sperm to mature and unite successfully outside the body. They were denied government funding for their IVF research, but their persistence paid off in their abilities to procure private funds. They were attacked, both by clinicians and by ethicists, many of whom were ultimately won over as their own colleagues became more familiar with the successes of IVF. Dr. Edwards, who filed 8 libel actions in one day, proclamed "I won them all, but the work and worry restricted research for several years."

Edwards's and Steptoes's initial medical research was slowed by a series of frustrations in being unable to get eggs to mature outside the body, then in being unable to get fertilized eggs to implant in the uterus successfully, and ultimately in transferring more than 40 embryos before obtaining their first pregnancy. That pregnancy was ectopic and was aborted before Louise Brown was born from the second pregnancy.

But that was back in 1978. Why has it taken so long for the Nobel Committee to offer much-deserved public recognition to these IVF pioneers? Dr. Steptoe is now deceased, and Dr. Edwards, age 85, is "not in a position to understand the honor he has received today," says Dr. Michael Macnamee, a longtime colleague. Since the prize-giving committee's deliberations are confidential, it is not possible to know for certain about the delay in awarding the Nobel Prize. The New York Times reports that the committee shies away from controversial people and issues. Certainly the prolonged ethical objections to IVF may have contributed to the delay, as may have Dr. Edwards's political views as a committed socialist.

Whatever the reason for the delay, today is a day to celebrate! People with infertility the world over know what it is to wait, we know what it is to be misunderstood, we know what it is to persist through emotional turmoil and medical disappointment. Some of us know what it is to rejoice. In the spirit of empathy for Nobel Laureate Edwards's grit and determination, for his medical persistence and vision, and for his magnificent contribution to the joy of many families around the world, I join with millions of others to salute him!

Infertility and Recipients of Embryo Donation

Last week my blog concerned embryo donation. This blog will focus on the recipients of embryo donation. With the large number of cryopreserved (frozen) embryos available in the U.S., only a small percentage are designated for donation to other individuals and couples. Who might be the recipients of these embryos? Why might this option be more appealing than egg (oocyte) donation or adoption? What psychological issues will recipients face as they pursue parenthood via embryo donation?

Among those individuals who consider becoming recipients are infertile couples whose treatment has been unsuccessful, single and lesbian women, individuals who have experienced repeated pregnancy losses (based on other than uterine implantation factors), and individuals with transmissable genetic diseases, absent or nonfunctional testes or absence of or nonfunctonal ovaries (with a functional uterus). However, the choice to be a recipient may not be available to these populations in all countries, so in this blog I will focus on options in the U.S., where practices can vary by agency/clinic.

So why might an individual or a couple decide to become a recipient of embryo donation, where the embryo is placed in the uterus of the woman recipient, with the hope that it will implant and develop into a healthy fetus? Many recipients pursue embryo donation because it is a less expensive family building option than egg donation or traditional adoption. Also, the process of obtaining donated embryos may take less time than adoption. Some couples are drawn to this option because of their wish to experience pregnancy, delivery and nursing of an infant. Others value that it offers greater control over prenatal care and nutrition than would be likely with adoption. Still others anticipate that future pregnancies using the same embryo donors would allow their children to be genetically related to one another, even as they do not share the genes of their gestational mother and her partner.

So what are the words of caution for individuals considering this alternative form of family building? In one's eagerness to locate a donor, some potential recipients may decide to travel to other countries to receive treatment that would be much less available or more expensive in the U.S. Known as reproductive tourism, this practice shortcuts the education and counseling provided in U.S. agencies/clinics, may not be performed under ideal medical conditions and, in some cases, is both financially and emotionally exploitive to the non-domestic embryo donors.

However, assuming that you remain in the U.S. working with an agency/ clinic whose staff are skilled in supporting both donors and recipients, you and your partner may need to travel for treatment and counseling, will need to have a home study performed in advance of receiving the embryo, and are likely to be expected to explore issues with a mental health professional in several areas: how have infertility and infertility treatment affected you? what are your concerns/fears/fantasies about building your family through embryo donation? what coping strategies do you envision using as you proceed with this option? how will you contend with the knowledge that any offspring born via embryo donation will probably have genetic siblings who are being raised by the genetic parents? will you disclose to any offspring about their embryo donation origin? how "open" or "closed" do you want your relationship with the donor couple to be? (Clinics make every effort to match donors and recipients with the same preferences) and how have you and your partner come to terms with giving birth to a baby not genetically related to either of you?

The World Health Organization recommends that counseling should be made available to all individuals and couples undergoing embryo donation. In the U.S. this is typically provided through embryo donation agencies. In the U.S., RESOLVE, the national infertility organization, has published extensive materials related to embryo donation (see www.resolve.org/) Among other issues, these resources will inform you about a number of financial expectations, which can include the cost of fees for medical examination, blood testing and professional fees that must be assumed for both the donating and recipient couples, psychological counseling before and after the transfer process, shipping of embryos, reimbursement to donors for storage expenses, the agency fee for its work in facilitating the donation, medical and genetic screening, and the home study.

So do you think of yourself as a potential recipient of donated embryos? With this as a relatively new parenting option, there exists some beginning research, an increasing number of agencies serving both donors and recipients, and excellent publications through RESOLVE for U.S. residents who would like to become more fully informed. If you are intrigued by this option for building your family, I hope my blog has pointed you in several directions to explore further!

Infertility and Embryo Donation

Embryo donation does not receive much publicity, yet it is important for people with infertility to know about it, as well as about embryo adoption, which I will discuss in next week's blog. Today I will focus on the donation of remaining embryos from one couple's IVF treatments to another couple, followed by the placement of those embryos into the recipient woman's uterus for the purpose of pregnancy.

When an infertile couple's treatment enables them to produce embryos, they very likely begin by having some of those fresh embryos placed via in-vitro fertilization into the woman's uterus, with the remaining embryos frozen for possible later use. If an implantation occurs, followed by a healthy pregnancy and successful delivery, the couple still have the option to use the frozen embryos at a later date in an effort to have more children. However, at some point the couple will decide that they will not use any more frozen embryos, either because they have been able to have their desired number of children or because IVF has not been successful and they have decided not to pursue future IVF efforts.

So the question becomes what to do with any remaining frozen embryos. The options available to the couple at this point include keeping them in frozen storage, asking that the embryos be thawed and disposed of, donating the embryos to stem cell research or donating the embryos to an adopting couple. There are currently 500,000 frozen embryos in the U.S. and one million worldwide. So why is the option of embryo donation not considered by more couples? For the most part it has to do with their emotional ties to the embryos and the reluctance to address their inevitable grief as they donate the embryos to another couple hoping to become the gestational parents.

Having put a great deal of time, expense and emotional energy into creating the embryos, a couple will want to be very certain they will not seek to achieve another pregnancy. The couple also may consider these embryos to be extensions of themselves, and in that sense have a genuine emotional attachment to each embryo, which could be considered a potential child. Thinking of donating their embryos can feel like letting go of an important part of themselves, and many potential donors resist the inevitability of the grieving that will accompany a decision to donate. Yet to allow their embryos to remain for years in storage presents its own set of dilemmas.

Yet many couples with stored embryos have a very real appreciation for the emotional yearning of infertile couples unable to give birth to a baby with their genes. The empathy they feel for couples whose treatment for infertility has been unsuccessful can promote a willingness to address the emotional grieving process in order to proceed with donation of their remaining embryos.

Well over half of embryo donations are anonymous donations, but the legal option exists for a donating couple to specify that they want an semi-open or an open embryo adoption. In an anonymous donation/adoption, medical information about the donors would be disclosed to a couple adopting the embryo(s), but no other identifying information. A semi-open donation/adoption could include sharing such information as family interests, first names, e-mail addresses, but not a mailing address. An open donation/adoption would typically include an initially signed agreement, specifying the level of contact with which both couples are comfortable.

So, as I find myself moving more toward sharing information about embryo adoption, I encourage you to stay connected and keep your eyes open for next week's blog on that subject!

Infertility Sadness: Is it "the blues" or depression?

Most of us who have grappled with infertility will readily admit to hours of sadness, days of feeling rotten and even periods of being emotionally overwhelmed. We may believe that those feelings go with the territory of infertility. But what if the time comes when we feel so unlike our "old self" that we begin to question whether the blue cloud hanging over us is here to stay?

Given the built-in stress of infertility, some sadness is inevitable. Our dreams of parenthood have been up-ended and deferred. We may be on hormones that affect our mood. We now have an unanticipated lurch in our relationship with our partner that makes us both walk on eggshells, first trying to comfort and next suppressing our painful emotions. Many of us find our sad feelings are episodic, perhaps relating to our menstrual cycle, to hormone treatments, to test outcomes or to toxic situations such as baby showers or announcements of a friend's pregnancy. So on the continuum of sadness, situational sadness is the least serious, and profound depression is the most serious.

However, the issue of sadness/depression reminds us that our psyches need more attention that they are getting. In that spirit, let me mention a few things to consider as you resolve to make your mental health a high priority during your treatment for infertility. This is especially urgent if you have symptoms of depression, including persistent sadness, guilt or irritability, sleep and appetite disruption, and the absence of pleasure. Depression is not only a mental disorder, so in addressing some of the physical symptoms you will want to be careful about what you eat and drink (avoid caffeine, which can make you anxious; avoid alcohol, which may worsen depressive symptoms). Since sleep disturbance is a common symptom of depression, it is critical to get an ample amount of sleep.

So what if you are attentive to all of these things and your sadness/depression does not abate? Now is the time to alert your infertility specialist to the ways in which your mood is disrupting your functioning and your life satisfaction. If you receive infertility treatment in a clinic that employs mental health professionals on its staff, hopefully you can consult with them. In addition, your infertility specialist may be able to change your hormone treatments to have a less disruptive effect on your mood.

If your infertility clinic does not have mental health professionals on staff, it still is possible they can suggest names of people whom their patients have used. You will want to have a consultation with a psychiatrist, in an effort to determine what mood disturbances you are experiencing; it also is the time to identify a therapist who is skilled in strategies of cognitive behavioral therapy, which is future oriented, teaching mental skills that address negative thought patterns and challenge feelings of helplessness.

Clearly it is a challenge to think of enlarging your treatment network to include professionals who will focus on your mental health. But if you have identified with the issues I present in today's blog, there is no better step you can take than to make your mental health a top priority. In my book When You're Not Expecting, I have several chapters devoted to seeking and achieving emotional resilience, as well as a Resource section at the end of the book with national organizations that can help you in making connections with professionals in your locality. Take a deep breath and resolve to pursue this additional resource today!

Life with Infertility is Hectic!

Whether your infertility is newly diagnosed or a condition for which you've received long term treatment, "hectic" is likely to be a familiar word in your vocabulary. However, for you, the frustrating aspect of "hectic" is that it is punctuated by periods of waiting -- for test results, for procedures, for consultations, and -- of course-- for a pregnancy. In my book When You're Not Expecting, I refer to this as the period when your life is on hold.

So, what's to do when you feel as if you're dancing to the tune of your infertility specialist, clinic schedules and medical procedures? Undoubtedly you will search for ways to lift your spirits, distract yourself from disappointing news, consider new options and nurture your relationships. These are all components of emotional resilience, a familar theme in my blogs. So, given how hectic your life feels, where can you begin to nourish your emotional self?

Many women tell me that it is soothing (and takes very little time) to have a ritual just before going to sleep at night and just before getting out of bed in the morning. One comforting ritual is to think of two or three things for which you are grateful; another would be to write briefly in a bedside journal ... perhaps about some positive event that has brought you happiness or that you anticipate with hopefulness. This quiet ritual takes you emotionally to a resilient place in your mind where you tap into feelings of strength.

Research cited in my recent blog reminds us that healthy women with low levels of a stress hormone in their saliva conceive in a shorter period of time than their counterparts with higher levels of the stress hormone. So the take away message for any woman trying to conceive is to do what you can to lower your stress. Depending on what appeals to you, think about yoga, meditation, mindfulness, deep breathing, repetitive prayer, muscle relaxation or guided imagery.

There also is research evidence cited by Alice Domar saying that alleviating depression and other psychological distress in infertile women appears to make it easier for them to become pregnant. I will address depression in future blogs, but if you believe this is an issue for you, now is a good time to consider seeing a counselor who can help you. In my earlier blogs and in my book I offer suggestions on how to identify a counselor and what you can expect from the counseling experience. If you think you have no time, just remember that lots of your time is spent waiting and feeling stressed. Better to use that time actively pursuing some emotional resilience with a therapist.

Try to get out of your "infertility rut." This means that you and your partner should spend some time thinking about new experiences. This won't keep you from thinking about your infertility, but it will provide a welcome distraction, and even the anticipation of a new experience can be uplifting. It could be as home-bound as planning a garden and ordering from a seed catalogue or as exotic as an ocean cruise (yes, I know -- you'll have to schedule it around tests and procedures!). You may face the challenge of how to jump from the rut on a low budget, but that can be part of the fun. Remember fun? Now's the time to capture some.

Another rut it's easy to fall into is a social rut, where you either quit socializing with friends (perhaps they're either pregnant or new parents) or you find that your friends are so preoccupied with your infertility that you feel as if you have a scarlet "I" on your chest. So figure out what you want to do about your social supports: nourish relationships with friends who are childfree or whose children are grown? tell your current friends that you'll keep them up-to-date if there's any news, but in the mean time encourage more broad topics of conversation than your infertility? join an infertility support group where some members may have achieved their own emotional resilience? take up a new hobby or volunteer experience that will make you feel capable and needed? The sky is the limit here, and any one of these options will broaden your horizons so your preoccupation with infertility is less intense.

So even as "hectic" and "waiting" are constant companions in your infertility journey, there are new ways to consider introducing emotional balance into your life. Breathe deeply and move forward!

Infertility and Emotional Resilience

Most people who have grappled with infertility have developed their own narratives about this experience and how it has shaped their lives. I often am amazed at how many people have found a silver lining in their infertility cloud. This past week has provided several experiences that heighten for me the connection between infertility and emotional resilience.

My first experience was with a group of about 20 women, ages 25 to 60, who conduct workshops and training sessions in their communities about issues affecting families. They had asked me to speak with them about my book When You're Not Expecting, and I encouraged them to ask questions and offer observations during the course of my presentation. Well, I had only spoken a few moments when the conversation turned quite quickly to their own personal experiences with infertility. Who would have imagined that 15 of these women had difficulties conceiving, pregnancy lossses, or lived in a childfree marriage? No matter what the experience was for each, the way in which they shared their infertility experiences ultimately came down to "It's not what I expected, but I know I am a more understanding and compassionate adult because of learning how to come to terms with my infertility." Personal examples ranged from adapting professional goals so they could be more generous in helping troubled families to ways that they redefined their own families that put them in closer touch with young nieces and nephews. The tone of the meeting was definitely upbeat, although there was a fair amount of Kleenex passed around the table as various women delved into their emotions to connect with the shared topic of infertility. What struck me very poignantly was how each person disclosing her thoughts had moved from emotional pain to resilience as she found a new way of shaping her future than the one she initially had envisioned.

My second experience this week occurred when I was interviewed live on our local public radio station about my book. Call-ins are a part of this particular radio hour and, once again, the callers shared their infertility and adoption experiences. One man expressed with zest how the pain of his infertility was eclipsed by the joy of adoption; a female caller spoke matter-of-factly about medical reasons that she could not risk a pregnancy, sharing her sadness that her husband's curly red hair wouldn't be passed along to their children, then moving on to talk about the emotional happiness her family shared 25 years ago as they adopted their two children.

In both of these experiences I was taken with how easily people could delve into their pasts and retrieve memories of unanticipated reproductive losses, the need to regroup emotionally, the capacity to find a new pathway, and the emotional growth that they now attribute to their infertility journey. I hope this can be especially heartening to any readers who are trying to make sense of your own infertility, since it is clear that emotional upheaval is expectable, but emotional resilience also can be an outcome of infertility.

New research on stress and infertility

For years there has been a dialogue between physicians and their infertile patients about whether stress is a cause of infertility or the result of infertility. Current research has shown that the stress levels of women with infertility are equivalent to women with cancer, AIDS or heart disease, so there is no question about infertility resulting in enormous stress. The breaking news published online in the journal Fertility and Sterility and summarized this week in the Science section of the New York Times, ( Old Maxim of Fertility and Stress Is Reversed ) is that women who stopped using contraceptives took longer to become pregnant if they had higher saliva levels of the enzyme alpha-amylase -- a biological indicator of stress. Specifically, women with the highest concentrations of alpha-amylase were 12 percent less likely to become pregnant each month than those with the lowest levels.

So what are the implications of this new research? The researchers say theirs is the first study to link a biomarker for stress with delayed conception in normal, healthy women, and they suggest that identifying ways to reduce or manage stress may be a low-tech solution for some couples diagnosed with infertility. Alice Domar, executive director of the Domar Center for Mind/Body Health at the fertility center Boston IVF, responded to the research findings by saying "This is one more piece of the puzzle that's adding up to the same conclusion: that stress is not necessarily a good thing for our reproductive system." Her 2004 book, Conquering Infertility, addresses the mind/body connection and suggests practices ranging from mindful meditation to yoga that can help women reduce the stress caused by their infertility.

So we are coming full circle: acknowledging the obvious, that infertility causes stress, and now addressing the scientific evidence that stress delays time of conception in healthy women. The researchers remind us that stress is the one consistent factor that shows an effect on how long it takes to get pregnant, of all the lifestyle factors studied to date. More surprising is that even low levels of stress can have an impact on conception.

Dr. Domar advocates that mind/body techniques can decrease physical symptoms of stress such as insomnia, headaches, abdominal pain and fatigue as well as psychological symptoms such as depression, anxiety, hostility and tearfulness. She cites recent research that has shown that women who participate in mind/body programs in conjunction with treatment from their physician have significantly higher pregnancy rates than women who receive medical treatment only.

With these intriguing studies, if you are a woman hoping to become pregnant (remember that the alpha-amylase study used data from 274 healthy women who had just started trying to conceive), certainly you will want to reduce your stress as much as possible in an effort to enhance conception. If you have been diagnosed with infertility, you are already in the midst of a stressful experience; seeking an infertility clinic that incorporates counseling, mind/body interventions and stress management strategies can provide you with new stress reduction techniques. In my book When You're Not Expecting, I provide information on how to locate a counselor or a support group, as well as lists of resources for help with mental health concerns, including stress.

Each of our responses to the stress of infertility is unique to our particular circumstances. Yet this recent research is a red flag that we should actively try to address our own stress levels in an effort to assist our physicians in their efforts to help us achieve a healthy pregnancy.