a fertile life

A few years ago we wanted to conduct a survey on a highly controversial topic, the results from which we hoped would effect a change in a California Law that was impeding an important stem cell research project. We had done our homework, too. We knew what to ask -- a list of questions that had been vetted by professional survey preparers -- and we knew who to ask, women 18-35, who had some experience with donating eggs for infertile couples. What we didn't know was how to easily locate women who matched our criteria and who would be willing to participate in our research project.

Enter Survey Monkey, an online service that matches researchers conducting opinion surveys with prequalified people willing to take them. With a variety of response validation techniques and methods to analyze results, SurveyMonkey and other companies like it are taking the opinion poll to new, more much more efficient heights.

Now, because of complex algorithms that match survey participants with researcher's objectives, what used to take hundred (or thousands) of hours to do: identifying a statistically significant survey sample size, now is as easy as a few clicks of a mouse and a monthly membership fee. With a readily identified audience, getting surveys back and verified is a far easier, faster process.

This will allow our ongoing studies into the attitudes of egg donors toward donating eggs for stem cell research not only go forward, but to be done in such a way that is will allow us to only determine the motivations of egg donors to become involved in this type of study, while also allowing us to determine a fair level of compensation for these donors.

The downside of this technology is perhaps obvious. Sites like SurveyMonkey survive because to a degree, people are willing to give up a measure of their privacy, not only actively, by filling out the survey itself, but passively, by leaving cookies (identifiers) at various sites they visit that monitor your internet habits and report back to those little algorithms, so they can find just the right target audience.

But these days, it seems privacy is more of a commodity than moral imperative, and so many users seem comfortable with that trade-off. But that's a topic for another day.

On the internet, there's an abundance of information just a few keystrokes away for people struggling with fertility issues. But how do you know what information you can really trust?

Simply typing in "fertility" in a Google search seems a good place to start for information, but in reality, the first page of results is riddled with potential landmines of [mis?]information, and there's over 10 million more results on the pages that follow.

In this blog I will examine just the top ten results that come up from this search, and help distinguish between the good and the not-so-good.

To understand what's useful and what's not, it's helpful to categorize this information according to the type of site it comes from. For example, FertilityStories.com would also fit into the category of "user-generated support," and sadly, because it relies on individual experiences, is probably the least reliable source of information in the group. Trusting individuals' experiences can be misleading at best and dangerous at worst. While there may not be anything factually wrong with the information provided, it almost certainly isn't applicable to you. At the very least, their anecdotes lack context. For example, a patient writing a fertility story might say that because they tried a common fertility medication like Clomid ten times without success, they recommend that other patients not try Clomid. That's a dangerous tale because it might turn you off to the very product that you need, because your body and your experiences are going to be very different from theirs.

Another category of site would be product-based websites, places of commerce that sell a variety of products or treatments.  FertilityFriend, TheBabyCorner, and FertilityBlend are examples of sites that have various products, from ovulation calendars to elixirs, that may or may not be helpful. The problem with trying to gather helpful information here is that while the sites may provide information that's factual, it may not be pertinent to you, and the focus is naturally going to be on selling a product rather than providing unbiased information that might lead a viewer to a competing product or treatment.

A third category of information would be "compilation sites" like Wikipedia and MedicalNewsToday would fall under. These sites may well have factual information, and very interesting articles, but without context, without an idea of how reputable or thorough the information is, they may confuse a patient more than help them or worse, cause them to fret about something completely unrelated to their particular case.

The best source of information available through this type of search would be actual medical providers, like WebMd and the American Fertility Association (AFA). These sites have much useful information and also allow patients to directly contact a specialist in the treatment of infertility, someone who put the pieces of your particular infertility puzzle together.

Becoming pregnant after successful breast cancer treatment not only appears to be safe, it may also be protective against a recurrence of breast cancer.

Over the years, I have done consultations with a number of women with a new diagnosis of breast cancer whose concern is fertility preservation, preserving the ability to have a baby after completing therapy. Although there are other options, this usually involves doing an expedited ("emergency") in vitro fertilization (IVF) cycle to minimize the delay before the initiation of treatment for the breast cancer. The eggs (oocytes) we retrieve are frozen, either unfertilized if the patient does not have a partner or as fertilized eggs (embryos) if she does.

Treatment for breast cancer is difficult emotionally and physically, and thus it's not surprising that breast cancer survivors are genuinely very concerned about doing anything that might trigger a recurrence. Inevitably, one of the first questions I am asked by women when they return to begin the process of building (or completing) their family is whether becoming pregnant will increase their risk of having the breast cancer "return." There is no final answer to this question at present, particularly because breast cancer comes in many varieties and with diverse characteristics. However, the good news is that the evidence so far suggests that there is no increase risk of recurrence from pregnancy. And interestingly, there is even a possibility that having a full-term delivery may even be protective against a recurrence.

In a population-based study from Denmark, over 10,000 young (ages 45 and under) breast cancer patients were followed as part of an ongoing long-term research project. Of these 371 became pregnant. Their risk of dying was compared to those women who did not become pregnant. Those women that had a full-term delivery had a 27% lower risk of dying than those that who did not have a pregnancy.

A word of caution. This apparent reduction in risk may not be "real" because it is possible that it results from the so-called ''healthy mother effect,'' that is, women with a better prognosis may be more likely to choose to become pregnant and have a baby. However, the authors performed additional statistical analyses that make that explanation less likely. If this protective effect is confirmed, it would greatly reduce the anxiety that breast cancer survivors live with and give them yet another reason to resume a "normal" life full of joy and anticipation.

Pregnancy after treatment of breast cancer

Ingesting more daily caffeine than is present in one cup of coffee while pregnant is associated with reduced fetal growth according to a well-designed study from a major medical journal.

Caffeine is easily absorbed and passes freely across the placenta. Ingesting the amount of caffeine found in approximately two cups of coffee is associated with a 25% reduction in blood flow across the placenta. It makes logical sense that any substance (or medical condition) that can reduce blood flow to the fetus is a potential cause of reduced fetal weight. A substantial number of scientific studies have examined whether caffeine is associated with "fetal growth retardation." The results have been contradictory, making recommendations in this area controversial. There are significant problems with many of these studies making it difficult to determine if their results are valid. A major underlying problem with the vast majority of these studies is that they are retrospective; they ask women to remember how much caffeine they drank during the pregnancy and then look at outcomes. They include no objective evidence that confirm the accuracy of the women's recollection, and they don't take into account that there are large variations in how quickly people metabolize caffeine, the effect of which is that caffeine levels can vary substantially among even when they ingest the same amount of caffeine.

An excellent article published in one of the world's leading medical journals, the British Medical Journal (BMJ), has provided substantial insight into this question by eliminating many of the problems with earlier studies. They followed 2,635 women through their pregnancy, asking them intermittently about their caffeine ingestion, and then testing caffeine levels in their saliva as double checks of the women's responses. They also measured the rate with which each woman metabolized caffeine. They found that any ingestion of caffeine above 100 mg/day, the rough equivalent of one cup of coffee or two cups of tea, was clearly associated with a reduction in the rate with which fetuses grew.

Although major medical organizations currently set the recommended limit for caffeine at about two to three time that amount (see link below), this study provides strong evidence that these guidelines need to be re-evaluated.

My current advice to a java-loving pregnant woman? If she absolutely can't or won't discontinue drinking caffeine-containing beverages during pregnancy -- which would be the ideal solution given the conflicting evidence about whether any amount of caffeine can be safely ingested during pregnancy -- she should limit her intake to no more than one cup of coffee or two cups of tea per day.

More details about the BMJ study

Current more liberal standards (.pdf file)

In the last week, I have seen three women who tell me there are no "good" men out there. Karen is a 36-year-old professor of molecular biology, Jane a 42-yr-old attorney, and Julie a 34-year-old stem cell scientist. All of these women are attractive, intelligent, and financially comfortable, and all have given up on finding the right man to have a child with. The men they meet, they tell me, are threatened by their careers and the fact that they don't "need" a man for financial security. Many men in these women's age group, they say, are divorced or commitment-averse and want to "play" rather than "settle down" and have a family.

These women are not alone in their decision to become single parents. In a study released earlier this month by the Pew Research Center, over 40% of the babies born in this country are born to unmarried women. This represents a dramatic increase over the past 20 years. In 1990, that number was just only 28%.

What's so interesting about this number is that this increase is largely attributable to women over the age of 30 with the greatest rate of increase being among Caucasian women.

Just how likely is it that a woman will find the man of her dreams and the father of their child in a dating world dominated by Internet dating? That question is the subject of an upcoming blog.

http://pewresearch.org/pubs/1586/changing-demographic-characteristics-american-mothers

Although a great deal of attention has been focused on the negative consequences of delaying childbearing among women, it is becoming clear that men also face significant risks when they delay starting a family. As a group, men over 35, and especially over 45, are more likely to be infertile, since the average quality of men's sperm falls over time.

But of even greater concern, children fathered by "older" men may have a greater risk of a variety of conditions, including autism and schizophrenia. In a subsequent blog, I will explore this association in detail. For now, suffice it to say that this increased risk is present in only some older men, and that tests are available to determine whether the offspring of any given man are at greater risk for these conditions. We do at least one of these tests prior to performing any fertility cycle involving a man over the age of 35.

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She finally provided an explanation for why she would have eight more children when she already had six children to care for, "That was always a dream of mine, to have a large family, a huge family."

While I've met many people who have said they want a large family, I have never met a person who yearned for a "huge" family, much less one not involving another parent. It begs the question, "Why?"

Fortunately, Ms. Suleman gave us an answer, and by giving us an answer this previously inexplicable story begins to make some sense. It seems her desperate desire for a huge family has its roots in what she perceives to be a difficult, dysfunctional childhood. "I just longed for certain connections and attachments with another person that I really lacked, I believe, growing up," she explained. She added that she lacked a "feeling of self and identity. I didn't feel as though, when I was a child, I had much control of my environment. I felt powerless."

What's so astonishing is that all of these regrets and misgivings about her childhood are coming from an only child! Just how much of a "connection" will she be able to have with each of her 14 kids, ranging in age from 7 years to just 11 days? And just how much of a "connection" will each child have with her?

How much of a sense of "self or identity" will each of her children have being only one of fourteen?

How much "control" over his or her "environment" will each of these children feel they have when they are competing with 13 others for attention from a single parent?

It's a sad irony that by having so many children she has all but guaranteed that precisely the same issues she had with childhood, which she was apparently hoping to correct by having many children, will also be suffered by her children.

A person should never bring a child into the world so they can work through their own childhood issues. They should work through their childhood issues first. Parenting is about providing a child with a loving and nurturing environment that allows them to complete the many daunting tasks involved in "growing up." It's not about giving yourself a second chance at growing up. Dr. Nancy Snyderman, NBC's chief medical correspondent said it very well, "I think when you don't have a connection in childhood, you go see a therapist. You don't have 14 babies."

In my earlier blog on this topic, I highlighted the importance of psychological screening when faced with a patient with ambiguous or questionable motives for having a child or additional children. When there's a doubt, any doubt, a psychological evaluation is mandatory. None of this is meant to disparage Ms. Suleman in any way. Coping with unresolved psychological issues is very difficult and can lead to dysfunctional, even self-destructive behavior in virtually anyone. Few, if any, people can honestly say they have never engaged in such behavior when faced with significant psychological stressors. Sitting home alone and drinking a couple bottles of wine or eating a gallon of ice cream is one thing. Placing 14 innocent third parties on the couch beside you during a destructive session of "self-therapy" is quite another.

Which brings me back to the mystery fertility specialist who "cared for" Ms. Suleman; he or she represents the classic "enabler." In her interview on "Today," she said she had six embryos transferred. Based on national guidelines, that's at least three times too many embryos for a patient her age, and perhaps six times too many for a patient like her, a young woman with a proven track record of becoming pregnant following advanced fertility procedures.

In her interview, Ms. Suleman indicates that her physician warned her of the risks of a multiple pregnancy and recommended that she transfer fewer than six. Ms. Suleman apparently insisted that they all be transferred, saying they were all her "children, and that's what was available and I used them. So, I took a risk." As I mentioned in my previous blog, her insistence is utterly irrelevant. Transferring six embryos is clearly outside the standard of care and thus should not have been an option for her.

These situations are easy to avoid. It is not uncommon for an infertile woman or couple to form an attachment to their embryos and view them as children-to-be, and thus be reluctant not to transfer all that appear viable. In cases like that, the number of embryos thawed becomes a critically important decision. You simply don't thaw more embryos than it is prudent to transfer. And, if the patient has a last second change of heart about the disposition of any excess viable embryos following the thaw, they can be refrozen. These are two simple solutions to avoid a situation like the one that occurred that fateful day.

Even if the fertility specialist transferred these embryos based on the erroneous belief that a patient has an absolute right to make medical decisions for herself regardless of the standard of care or the risk involved, he or she forgot one very simple fact when agreeing to transfer those six embryos. There were seven patients in his clinic that day, not one. Only one gave consent. The other seven, who lay silently in a petrie dish while their health and lives were put at enormous risk, could not.

Image via Wikipedia

Several years ago, very soon after I began my practice, I had an experience that profoundly affected the way I approach this situation.

At that point in my career, I had little experience with the laboratory aspects of IVF, and so I relied heavily on the opinions of my embryologists when discussing embryos with patients. We had planned to do a frozen embryo transfer for a patient that particular afternoon, but late in the morning I received bad news. Only two of six embryos had survived the thaw and their quality was dismally poor. Written by an embryologist on a yellow sticky note attached to the picture of these embryos were just four words: "Not Suitable For Transfer."

I called the wife and gave her the bad news along with our recommendation not to proceed with the transfer, and she tearfully agreed. About an hour later, I received a call from the husband asking me if he could come late that afternoon to discuss the situation, and I agreed to stay after our usual closing time to see him. By the time he arrived, alone, the office and laboratory staff had left for the day. I showed him the embryos, explained that they were very slow growing and were "D" grade, the lowest grade an embryo can get and still be alive (an "A" grade is best). The chance of a healthy live birth with those embryos was probably well below 5%, I told him. He paused, looked directly at me and said, "You know, I'm having a crisis in confidence here. In our fresh cycle, we transferred excellent embryos and did not get a pregnancy. And now we have virtually nothing to transfer in our frozen cycle." I just nodded, because, frankly, I was having a bit of a crisis in confidence too.

He lowered his head and cradled his forehead in one of his hands clutching an eyebrow between his thumb and ring finger, "My wife is devastated. What should we do?" For what seemed like a very long time, we just sat there, the picture of the embryos on the desk between us. I remember the office being so quiet. I remember it seeming like the air was completely still, and I remember the sun succumbing to the night and falling helplessly below a mountain outside the window. It felt like the universe realized something momentous was about to happen and had no choice but to stop and hold its breath while awaiting this decision.

And suddenly the decision wasn't so difficult anymore. As I looked at those embryos, I realized we were having a crisis in confidence in them, and we had given them no opportunity to prove themselves. I realized that we had flinched in the face of fear rather than confronting it with hope. I told him, "We don't know how low the chance of a success is if we do a transfer, but we can be certain that if we don't do a transfer the chance of success can only be one thing: zero."

He and his wife decided to go forward with the transfer.

And so I called the clinical and laboratory staff back in--you can imagine how excited they were to return to do a "hopeless case." He went to pick his wife up and we did the transfer. Twelve days later, the miraculous happened and she became pregnant, but we remained guarded given the appearance of the embryos. Every ultrasound was an ordeal as we worried about a miscarriage or an abnormal fetus. But the fetus, completely oblivious to our anxieties, grew and developed until it was delivered as a healthy full-term boy, who they chose to name "Sam," my very favorite name for some reason.

For years they have sent me regular updates and pictures of Sam which I treasure. A couple of weeks ago I talked to his father on the phone and he told me Sam was going away to college, that he was athletically and intellectually gifted, but most importantly, that he was a caring, compassionate person who frequently did volunteer work, a person always focusing on what he could do for others. And as I heard the pride and love in his father's voice, a tear slowly made its way down my right cheek as I remembered that very still night when we chose to believe that a fear of failure should never be chosen over a hope for success.

Without hope, my patients would have never met and been able to love and be loved by their wonderful son. There would have been no Sam, a young man with an unlimited potential to bring happiness and goodness into the many lives he will touch in his life.

I think about him every time I sit across the table from a devastated couple looking hopelessly at a picture of embryos that, at first glance, seem "not suitable for transfer."

As a fertility specialist, I am calling on the Medical Board of California to investigate the circumstances involving the treatment of Nadya Suleman, the mother of the octuplets born last week at Kaiser Permanente Hospital in Whittier, California. I am also asking for understanding and support for Ms. Suleman, acknowledging that this mother of 14 children has a tremendous task ahead of her regardless of the circumstances that led to her present situation.

We need to know how this happened, so steps can be taken to prevent it from ever happening again.

The information available through the media so far is so concerning that it is imperative the decision-making process that led to the octuplet pregnancy be thoroughly investigated. The Medical Board of California needs to examine the circumstances underlying the Suleman case and to take disciplinary action as appropriate.

In general, physicians are loath to question the actions of another physician. I am speaking out, however, because events like this can have two very negative consequences. First, some couples who would benefit from advanced fertility treatments may now be dissuaded because this news has reinforced a common fear that high-order multiples are routine, or somehow unavoidable when undergoing such treatments. I have already had a number of patients ask me for reassurance that something like this would not happen as a result of their treatment. Second, because the octuplets are doing well, and will almost certainly remain in the public spotlight for some time, the extreme dangers of such a pregnancy may not be appropriately addressed or understood.

I have seen a number of negative comments about Ms. Suleman's decision to allow eight embryos to be transferred to her uterus. She is apparently not receiving the public and corporate support normally afforded women with high-order deliveries such as these (www.foxnews.com/story/0,2933,487518,00.html). This criticism and lack of support is both unfortunate and unwarranted. Ultimately, any support that is given to the family by corporations or individuals will benefit the children, and whatever one might think of this situation, clearly they are innocent and will need all the help they can get.

We don't know what conversation Mrs. Suleman and her fertility specialist had prior to the decision to transfer eight embryos. But even if she specifically requested, even demanded, that eight embryos be transferred, and there is no evidence that she did so by the way, the responsibility for implementing a decision of this type rests only with the treating physician.

Virtually every physician has been asked to prescribe medications or perform procedures that are clearly not in a patient's best interests or are outside acceptable medical practice. Frankly, it's routine in our practice. A significant percentage of those undergoing treatment through IVF request that we transfer an inappropriately large number of embryos, because they have failed so many times on their own and want to "make sure" they get pregnant. Their overwhelming concern is becoming pregnant at all not avoiding multiple pregnancy, because they have been disappointed so many times before. It is the physician's responsibility to provide a patient with only those treatment options that fall within the standard of care for the condition they are treating. Under such circumstances, even obtaining "informed consent" from the patient does not eliminate or even diminish the physician's responsibility.

Here's an extreme example to make my point...

If a patient were to ask to have one of their legs amputated due to chronic knee pain from a sports injury, it would clearly be unacceptable for a physician to comply even if the patient insisted on proceeding after being informed that doing so would be an extraordinarily bad decision fraught with devastating long-term consequences. There is only one person ultimately responsible for providing treatment that falls outside the standard of care--the physician. A patient's consent to it is irrelevant.

According to statements by the octuplets' grandmother Angela Suleman, published in the Los Angeles Times on Friday, January 30, 2009, her daughter had eight embryos transferred in 2008, and "they all happened to take."

If that is true, it's an unconscionable breach of medical ethics and violates the cornerstone of all doctors' primary ethos: "First, do no harm."

Having a child is a monumental life decision. In addition to the responsibility a fertility specialist has to the infertile woman/couple, he or she also has a profound responsibility for the health of any children that might arise from the procedures they perform. Particularly because a third-party (the potential children) can be affected, the infertility specialist must understand the motivation of the person requesting assistance in having a child or children and make sure that treatment decisions are in the best interests of the potential children as well as the infertile patient.

If these media reports are accurate, Ms. Suleman is a young woman with "plugged tubes." Performing IVF in these types of patients yields an extremely high overall pregnancy rate, as well as high implantation rates (the chance that any given embryo will lead to a pregnancy). Obviously Ms. Suleman had a multi-proven history of using advanced fertility procedures successfully, and had previously even given birth to twins. She is probably the last patient any fertility specialist should have been aggressive with in terms of number of embryos transferred into her uterus. She apparently told the physician she only wanted "one child," a girl. In a case like this, it is indefensible to transfer more than one or two embryos.

Guidelines from the American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technologies (SART) do not allow more that two embryos to be implanted in a situation like this in "the absence of extraordinary circumstances." (ASRM Guidelines November, 2006.) And there are no circumstances extraordinary enough to warrant transferring eight embryos.

Every birth is a cause for celebration, and like the rest of world I am overjoyed to see positive updates on the health and progress of these eight little miracles. That they were born healthy and continue to flourish is a great testament to the skill and dedication of a very talented Kaiser team and to the babys' will to survive and thrive. But as I celebrate these births, and the remarkable strength of a mother who carried them for an astonishing 31 weeks, as a medical professional with more than 16 years in this highly specialized field, I realize that on occasion luck grants a very poor decision a good outcome. Decisions cannot be judged solely by their outcomes.

Ms. Suleman's fertility doctor put in jeopardy the lives and health of 8 unborn children, not to mention the mother herself. But for the planning and skill displayed by the team of delivery doctors and nurses, what has been heralded as a medical miracle may very well have been an unprecedented tragedy of ego.

UPDATE: According to a CBS News report, the Medical Board of California has initiated an investigation into the transfer of eight embryos in this case (www.cbsnews.com/stories/2009/02/05/earlyshow/health/main4777292.shtml).

Dr. Samuel Wood is one of the country's most highly respected fertility specialists. His distinguished academic background includes an M.D., an M.A. in Psychology, a Ph.D. in Biochemistry and Molecular Biophysics, and an M.B.A. He is Board Certified in Reproductive Endocrinology and Infertility and has served on the Clinical Faculty at the University of California San Diego. Dr. Wood is a frequently sought-after commentator on the myriad ethical issues surrounding infertility and embryonic stem cell research, and has been featured in numerous newspaper, radio, and television segments on the subject of reproductive medicine and stem cell science, including appearances on the Today show, Frontline, Good Morning America, the Discovery Channel, and a BBC documentary that has now been seen in over 50 countries. He is a listee in the 2009 edition of Who's Who in America and was recently named one of the Top 50 To Watch by San Diego Magazine. For more information, visit www.fertile.com.