The Perception of Infertility Stories

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I recently finished reading Julia Leigh’s new memoir Avalanche, a book by turns interesting and difficult in its frank depictions of fertility treatment*.  At times, I found myself nodding in understanding or literally gasping at some of her recollections.  In any case, I was interested when I saw that the New York Times had picked it for a book review along with another book on infertility.  While I see articles and books on topics such as miscarriage and infertility appearing periodically – and perhaps more often than I once did – I’m trying to be hopeful when a major media outlet takes on infertility.  It’s a more common issue than people think and important to discuss.

Then I read the review.

Rachel Cusk doesn’t so much review Avalanche, for which she reserved the majority of her commentary and barely touched on author Belle Boggs’ work The Art of Waiting.  Instead, she used her column inches to write essentially an op-ed on how she perceives infertility and the treatment of such.

There’s a lot in the article that as a woman who has experienced primary infertility and gone through fertility treatments ranging from Clo.mid and timed intercourse to injected fertility drugs, IUI, and IVF I find breathtakingly ignorant, judgmental, and frustrating.  Others, including Elissa Strauss in Slate , Pamela Tsigdinos in Medium , and Loribeth at The Road Less Traveled have written excellent rebuttals to Cusk, taking on many of these points as well.

Cusk writes of women writing about undergoing IVF or fertility treatment “The woman writing about the travails of assisted reproduction, on the other hand, is in a somewhat curious position…This woman doesn’t – can’t – fear what having a child will mean for her hard won social and intellectual autonomy; she isn’t concerned with the right to express ambivalence toward this oldest and strongest of binds – indeed, she perhaps views maternal ambivalence as a somewhat grotesque luxury.  No, this woman is unambivalent: she wants desperately, blindly, to become a mother…”  In this, Cusk seems to less be critiquing Leigh’s book than she is offering some sort of categorization of all infertile women writers.  It feels dismissive and untrue.  I know I did not brush away lightly the concerns about what having a child would do to my career or life.  With everything I was putting on the line, I was more aware than ever of that conflict.  I had a lot of time to consider exactly how a child might impact my life and marriage – possibly more than some fertile people simply because of the extended time and effort required.

Throughout the review, Cusk makes references to infertile women selfishly chasing something that simply isn’t going to happen, almost a delusional state where everyone else can see the writing on the wall but the woman keeps pouring resources into it, defiantly refusing to see what is staring her in the face.

This is where, to me at least, Cusk misses the point entirely.  It is because of books and authors like Julia Leigh speaking up that women experiencing infertility have these varied stories to consider in making decisions about treatments like IVF.  From the time I was diagnosed, I had books such as Melissa Ford’s The Land of IF that examined the varying pros and cons of the options open to me once the doctor told me that I most likely needed medical help if I wanted to conceive.  Silent Sorority by Pamela Tsigdinos helped me to understand that IVF was no guarantee and encouraging me to do my own research.  It was also the book that reminded me, from early on when I did not have the luxury of knowing how this was all going to turn out, that no matter what, I could – and would – figure out a way forward regardless of how treatment ended. There were so many other books I read, all with different stories and endings, from Waiting for Daisy by Peggy Orenstein to Cracked by Miriam Zoll to Good Eggs by Phoebe Potts.

These women put it out there, shared their hard won experiences and wisdom, and because of them, I was better able to consider my options, empowered to set boundaries on the treatments I was personally willing to consider, and know that I had choices.  Not always good ones, certainly not always the ones I wanted, but these books (and bloggers) had a tendency to pull off the blinders I sometimes developed in the midst of treatment and help me reevaluate.  It was often good to be reminded that everyone has different feelings and reactions and resources to apply to various paths out of infertility as well as tolerance levels for procedures like IVF.

Avalanche is a multidimensional work that examines the facets of an individual experience and how infertility – and motherhood – are perceived in today’s world.  It’s a voice in the conversation surrounding the ethics and issues when fertility isn’t a given.  The voices and experiences are indeed diverse, but for me – and many of these writers – speaking about infertility isn’t a purely intellectual exercise, it’s an intensely personal, life-altering condition.  This is another place I struggled with Cusk’s review: I cannot speak about infertility with an airy, detached, academic quality.  It is the very real, wrenching memories of sobbing in ultrasound rooms, the physical scar tissue from PIO injections, the messy reality of bleeding.  Cusk displays an incredible amount of privilege by treating the subject as merely a thought exercise instead of treating it with compassion and empathy.

Cusk once wrote the following of a review her own book A Life’s Work received: “…for [the reviewer] was not judging the book as a book.  She was judging it as a social situation.”  Cusk obviously takes exception to such judgment when applied to herself.  It is a shame that she falls into the same trap when considering Julia Leigh or Belle Boggs and their experiences.

*Pamela Tsigdinos is hosting a book tour of Avalanche on Wednesday, September 21, which I am looking forward to participating in.  If you want to join in or read along, the details are at Finally Heard/Silent Sorority.  It promises to be an excellent conversation.

Thanks to Mel at Stirrup Queens for hosting and originating Microblog Mondays.  If you want to read more Microblog Mondays posts or submit your own, head over to her blog.  

Oh, Right…Infertility

I like to think I’m not particularly superstitious, but when Arthur and I got down to talking about the nuts and bolts of transferring one of our two remaining embryos in the fall, I couldn’t help it.  I used to love fall.  My birthday is in late October and I’m a huge fan of pumpkin spice everything, jack-o-lanterns, the beautiful days with crisp evenings, and the leaves turning brilliant colors.  However, the last few years have gone something like this:

A few days before my 30th birthday – Diagnosed with PCOS and told that it was “not impossible, but unlikely” that we’d be able to conceive on our own.

31st birthday – In the middle of ovarian stimulation/egg retrieval for the first IVF cycle that ended in miscarrying twins.

Shortly after my 32nd birthday – Arthur unexpectedly lost his job and I started bleeding with the SCH (both on the same day!).

33rd birthday – My brother shot himself.

SO…while I can intellectually accept that all of this is unrelated and probably coincidence, fall just doesn’t seem to hold the good sort of surprises for me.

We looked at each other when I brought this up and I knew as soon as I said it that we probably needed to put the transfer off a couple of months.  Not only did it give us some much needed financial breathing room, it gave me some emotional breathing room.

I don’t know how I’ll handle that first anniversary of my brother’s death.  I do know that the stress inherent in a transfer cycle, mega-doses of progesterone and, if I was lucky, HCG in my system won’t make it easier emotionally.  I also know that it’s not the time to deliberately set myself up for the terrible disappointment of a negative beta, the anxiety of an early pregnancy, or the devastating loss of miscarriage.  If we got pregnant on our own around that time, well, we’ll cross that bridge if we ever come to it, but making a choice to throw a transfer in there is a whole other situation.

I have such mixed feelings surrounding putting transfer(s) off until early 2017.  Relieved because I just don’t know how much more stress/loss I can take right now, and it’s a wonderful chance to get to simply enjoy parenting E (who has become a great deal of fun to interact with).  Hopeful because we have two frozen embryos and some time for natural cycles.  Frustrated because at some level, I’m tired of infertility.  I’m tired of knowing that we likely have about $7,000 – 10,000 in RE bills coming to complete the transfers.  I’m tired of waiting and just want to be finished with the process.

Regardless, I know it’s the right decision.

In a month or two when my met.formin prescription runs out, I’ll probably make an appointment to re-up that and do the saline sonogram to check my uterus for scar tissue or other problems.  I’m hoping sonogram comes back okay, but at least if there are issues, we have some time to mull over options before next spring.

In the meantime, we’re informally seeing if something breaks loose in a natural cycle.  Truthfully, I don’t see this happening.  We needed a lot of medical intervention to get pregnant, have no idea at this point if my left fallopian tube is open, and while I am having surprisingly regular cycles, we never made lots of great quality embryos during the IVF cycles.  I know what the deck looks like, and it’s not stacked in our favor.  At some level though, it’s almost as if I need to try this for a while – if just to satisfy my curiosity and answer the “what if” in my head.

The Media And Why Blogging Matters

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One of my biggest pet peeves when it comes to medical procedures or shows on television is watching a patient flat-line and the providers yell “Let’s shock him/her!” Such a moment will have me sitting bolt upright (at best) or actually jumping off the couch (at worst) shrieking “You don’t shock a flat-line! Where the heck did you get your ACLS* certification?!”**

A close second, however, is how often cardiac arrests are successfully resuscitated on TV. A study done in the 1990s showed that around 67% of TV “codes” have a patient surviving, usually neurologically intact. Curious about the real survival rates? According to the American Heart Association, in 2013, 9.5% of adults who experienced cardiac arrest outside of a hospital setting survived to discharge. Of adults who arrested in hospital, the figure is 23.9%. These statistics, I might add, specify only that the person survived until hospital discharge. They do not address neurological status or ongoing health concerns.

Some people may think – and have told me as much – “Big deal. It’s just TV. Stuff gets exaggerated on TV and the in the media all the time.” The assertion about TV and the media is true, but I don’t think it’s as benign as that. I think when people are put in terribly stressful, painful situations and asked to make life-altering decisions, it’s harder to explain why resuscitation efforts were unsuccessful or might not be the best choice in a specific situation. It’s harder to accept death, easier to see it as a failure or something one can outwit almost indefinitely.

This isn’t to say CPR or AEDs/defibrillation aren’t useful. It isn’t to say we shouldn’t keep working to find ways to make that survival rate higher. It isn’t to say we should never intervene in cardiac arrest. It would be fantastic to reach a 67% neurologically-intact survival rate both in hospital and out.

But right now, it’s not reality.

Which pretty much sums up how I feel about IVF and the media.

For what it’s worth, IVF helped us conceive our daughter. We are, in many ways, a success story. I’m not sorry I went through the procedure given the particulars of my infertility and other such factors. My RE (the second/current one) was honest with us about our chances and the known risks. I do think, however, that there are a lot of issues surrounding IVF that need to be addressed. The media is beginning to cover some of the difficulties surrounding IVF, but there’s still a lot of glossing over the painful realities.

IVF is a useful medical treatment for certain types of infertility. It is not magic. It fails a lot – probably a lot more than people who aren’t in either the fertility industry or in treatment realize. According to the American Pregnancy Association, IVF success rates are about 41-43% per cycle for women under 35 and go down from there.  In other words, it often takes more than one cycle even in the best circumstances, something my friends and family members were often surprised to find out because there’s definitely an impression out there that IVF “usually” works.

A study came out in the Journal of the American Medical Association recently, resulting in headlines from the likes of The New York Times about persistence paying off in IVF. The study basically stated that the conventional wisdom when it comes to number of IVF rounds – that after three or four with their own eggs, people should move on to other treatments or methods to resolve infertility – was wrong. Instead, the study said six rounds – and up to nine rounds – could still offer reasonable chances of pregnancy.

So much wrong here that I’m going to largely hand it over to the plenty of other bloggers who have covered many of the angles ably. Dawn Davenport from Creating a Family points out the unease she feels around such a study. Pamela Tsigdinos sums up the real ethical problems inherent in advocating six to nine rounds of IVF. Amy Klein and Dr. Jeffrey Braverman take to task the study itself and the methods used.

From where I sit, if I was reading The New York Times article without being an infertility patient and having gone through IVF myself, I would think that IVF pretty much always resulted in a baby. Even if for some people, it obviously took awhile. I would think that six to nine rounds might be a reasonable number based on the media reports. The researchers from the study certainly give that impression, as this quote from Dr. Scott Nelson implies: “For most couples – and certainly those where the woman is younger than 40 and those of any age using donor eggs – two-thirds will achieve a live birth after five or six treatment cycles. This will take, on average, two years and is similar to rates that couples conceiving naturally take in one year.” Sounds like a reasonable sacrifice.

Except that I have gone through IVF and I have a much better idea of what six to nine rounds entails. The reality is that in a country where IVF is rarely paid for by insurance and people have to save up for each round, the two year timeline Nelson mentions is laughable. It’s also nothing like people who get pregnant naturally and don’t have to take the time off work and live their lives around clinic schedules for the countless monitoring appointments, egg retrieval surgeries, and transfers. I know firsthand living around clinic schedules for a longer term takes a terrific toll on life. While the 65.65% birth rate after this many cycles is trumpeted in the article, there’s barely a mention of the 30+% who will do all of this and still leave with no baby. This is not a small number.

As an infertility patient, media coverage that largely focuses on the success rates of IVF frustrates me. I know perfectly well that we could have walked away from treatment with no baby and it would not have been from a lack of trying or from something we did or didn’t do. It angers me that so many people outside of the infertility community are given the impression that having a baby is something controllable with enough fertility treatment or persistence (again, roughly 34% did not even at the extremes in the study).

In a large part, this is why I keep blogging. I periodically go through the sort of survivor’s guilt questions inherent in having managed to conceive and give birth to a living child after infertility of whether and how I can contribute to conversations about infertility. It’s one of the internet’s finer qualities that smaller, more niche voices have a place in the conversation and are being heard more often. I figure that speaking up to offer a firsthand perspective about the many difficulties inherent in IVF and infertility and an opportunity to counter some of the misguided impressions is definitely reason enough.

It would be fantastic to reach the point where there is as much reason to be optimistic about IVF as the media depicts.  Until then, I’m glad that people in the infertility community are able to correct and discuss these reports, as well as sharing their stories.

*ACLS stands for Advanced Cardiac Life Support

** It really is not ACLS protocol to shock flat-lines. Basically, a shock is done to induce a brief flat-line (asystole). The hope is that then the natural pacemakers of the heart will take over to produce a rhythm that will pump blood to the vital organs of the body. Think of it like rebooting a computer. Rebooting works when something is messed up in the system, but will not work if the computer is not on at all.

If you want to check out more Microblog Mondays posts, head on over to Stirrup Queens to join in !  Thanks to Mel for hosting and originating Microblog Mondays.  

In Which We Have A Conversation With The RE

Right around the time I went to see my OB/GYN in September because my PCOS was causing weird bleeding and fierce acne, I also found myself unable to quit thinking about the two embryos we still have in storage. I had/currently have zero desire to be pregnant right now. At the same time, I kept wondering what the real possibility of a second pregnancy would look like or if there even was a reasonably good possibility of that happening.

Part of the issue is that out of three pregnancies, I’ve had zero normal, term deliveries. Each subsequent pregnancy has required more and more medical intervention. My first miscarriage was sad but routine. My ectopic required follow-up blood draws and monitoring for over a month, and even then I was really pretty lucky when it comes to ectopic pregnancies as I miscarried “naturally” without needing metho.trexate or surgery. The third pregnancy, of course, required a total of 4 ER visits, 2 brief admissions to L & D, innumerable office visits and ultrasounds, 17P shots, specialists, a 55 day hospital stay for me, a c-section and a D&E for retained placental fragments (not to mention the lengthy NICU stay for E).

In other words, it’s not prudent to do things that require actual planning and serious time/financial/emotional commitment such as applying to start my master’s degree until I’m truly done with pregnancy. So after talking with my OB/GYN, I went over to the RE’s office, which happened to be in the same campus and made an appointment to see Dr. E. We had questions about the quality of the embryos, the possibility of scar tissue in my uterus, and what came next. I also needed to know how the embryos were frozen and whether we would do one transfer or two. There’s obviously a financial difference and we needed to know ahead of time so we could plan savings.

We met with Dr. E a few weeks ago and set up the outlines of a plan. Much to my surprise, the quality of the two embryos is quite good. “These are the two best embryos you’ve made,” Dr. E told us. He also told us that the embryos were frozen as individuals, not as a pair.

Dr. E concurred with both the perinatologist and my OB/GYN that while I’m always going to be a high risk pregnancy because of my history, the subchorionic hematoma (SCH) was most likely a one-time thing. There’s no reason to think that another pregnancy necessarily would be dangerous or that I’d wind up hospitalized with a premature birth again. Then we got down to the details of what a transfer would look like for us. “Definitely one at a time,” Dr. E said. “I’d even go so far as to say that given your OB history, this is a medical necessity.”

“Because I’m already high risk and twins are an even higher risk?” I asked.

“That’s part of it,” Dr. E said. He had a theory about my SCH. The causes of SCHs are mysterious and not well studied. There’s some thought that blood clotting disorders can be a factor, but due to my infertility and miscarriage history, I’ve had a number of the work-ups for blood clotting issues and we’re reasonably certain that wasn’t my problem.

I’ve had a total of five embryos transferred. We know for a fact that four of the five implanted (blighted ovum, the baby I lost at 9 weeks, the ectopic, and, of course, E). Dr. E told me that it is somewhat unusual to have such a high implantation rate in IVF. When we did the ultrasound with E and saw only one gestational sac, we all figured that the embryo we’d transferred with E had just stopped developing and not implanted.

Dr. E thinks it’s a possibility with my track record of implantation that that embryo did implant and try to grow briefly, there was a vanishing twin that never got far enough to see on the ultrasound, and that this may have caused the SCH to develop. Dr. E stressed to us this was merely a theory, but when he said it, it made a lot of sense.

We also talked about the state of my uterus. While Dr. E said he couldn’t be certain until he actually did the imaging, he’s reasonably confident that I won’t have extensive scar tissue. Apparently having the D&C or D&E shortly after giving birth makes the risk much higher for scarring but mine was far enough out from my daughter’s birth that the risk was lower.

All in all, it was a good conversation. The current plan is to consider transferring sometime in the fall of 2016, but that depends on how E is doing and how Arthur and I feel about it at that point. We’re done with fresh IVF cycles. At least we have answers to our questions and can make fully informed decisions going forward.

The Messy Intersection of Hope, Pain, and Advertising

I’d seen the viral photo of the baby surrounded by IVF syringes show up in my Facebook feed a couple of times. I’d paused to consider it, but had never read the caption or anything about it. I thought it was a powerful visual, a pointed reminder of the realities of IVF. The photo itself, with no caption, I identified with in its portrayal of struggle.

Then I read an article about the photo, and to say it conjured up mixed emotions is an understatement. In particular, a couple of items stood out.

Before I go on, let’s get this part out of the way: I’m not angry with my current RE, who has always been ethical and careful about explaining the known risks to me. I’m not angry with my IVF clinic. I don’t think IVF should be banned. Nobody has made any medical mistakes that I’m aware of throughout any of my treatments or pregnancies. I’m truly glad for the mother who took the photo, identified as Angela, that her daughter is “absolutely healthy and perfect” and that she is happy. I’m aware that pregnancy is a roll of the dice in so many ways, and perhaps, that’s my biggest issue here.

I’m frustrated at being shown an “absolutely healthy and perfect” baby and told to “…just hang in there” as though anyone who perseveres long enough, pays enough, and suffers enough will have that healthy baby. I understand that Angela shared it as an encouragement. I disagree with the “…just hang in there” message strongly, but I also recognize she’s a private citizen who wanted to help, never expected this to go viral and excited to share her hard-fought-for daughter. However, in the course of reading the article, I found out that the photo was originally made public by a fertility clinic*.

This struck me as far more problematic.

There is, of course, the fact that IVF cycles fail to produce a live birth more than half the time even under optimal circumstances when using the patient’s own eggs. There is also this: IVF, according to a Danish study from 2010, is linked to a 53% greater chance of preterm birth and doubles the risk of an extremely preterm birth (prior to 32 weeks) in singleton pregnancies. 8% of IVF/ICSI babies in the study were born prematurely, and 1.5% were born very prematurely, compared with 5% and 0.6% respectively for women who did not use IVF/ICSI. This is not taking twins or higher multiples which automatically have a higher risk of prematurity into account.

I understand that, for better or worse, fertility treatment is a business. Of course this clinic is showcasing such a fine outcome. I have no doubt they have all sorts of social media experts, including whoever added the caption with the subtle knife twist about the photo showing “the true definition of love that went into making this gorgeous new baby girl.”

It’s not revolutionary or surprising that infertility involves a lot of emotions, often strong ones. I know I personally felt terrible that because of my PCOS, my husband might never be a father. It’s something I’ve known he wanted since I met him when he was sixteen. I told him repeatedly that he should have married someone else, someone who could give him children. I’ve heard similar statements from other infertile people who have fertile partners. We wanted a child badly and paid with enormous amounts of money, a couple of losses, a very high risk pregnancy, and the near death of our daughter. How much does captioning such a photo as “the true definition of love” put pressure on already hurting and desperate people?

Angela and her partner were lucky in the end. They had the finances to continue cycling, a problem that IVF could fix, and apparently a healthy pregnancy. Not everyone has these resources or conditions. “…just hang in there” can mean marital problems or prematurity or severe financial issues among other things for plenty of people. I don’t say any of what I listed above to complain or look for sympathy or pity. We were also lucky and took our daughter home. We had a good outcome. Was it worth it? In the end, yes, because it worked. But it very nearly didn’t work in a terrible way, and then what about that price?

The people who promoted this line of thinking are doctors. They are scientists. They are highly educated, intelligent people. Because of this, I struggle giving the clinic a pass, even in our advertising saturated, self-promoting business climate. They know the numbers and ought to understand what hanging in there actually demands.

It’s a manipulative message to send to a hugely vulnerable population.

*I have deliberately not linked to the fertility clinic Facebook account where the photo was originally posted or their web page.  The name of it is in the Today article I linked to in the initial paragraph if you wish to explore further.