Like many women who have experienced a miscarriage, I knew I wouldn’t likely ever be given an explanation as to why it happened. And like many women who have experienced a miscarriage, I went looking for one anyway.
My miscarriage story: During November 2015, I was diagnosed with unexplained secondary infertility, a diagnosis rendered especially mysterious by the fact it took us just a couple of months to get pregnant with our then 3-year-old son. In March 2016, I had a single embryo transfer following a medicated cycle with PGS and PGD screening. (We were trying to avoid the BRCA gene, which my husband has.) Six weeks after the transfer, I woke up in the middle of a Tuesday night, a pool of blood and fluid stretching out around me; a comma-shaped stain remains on our mattress still. I bled, and bled and bled and bled, through the car ride to my doctor and during the ultrasound which revealed a heartbeat. I was given permission to experience a little hope, albeit a modest one. He’d seen this work out before. Time to rest. When I returned on Thursday the heartbeat had disappeared, as had the pregnancy hormone coursing through my body. There’s more: the following Monday night I went into labor and delivered two softball-sized blood clots in my small New York bathroom.
My sadness was nearly overshadowed by befuddlement. My doctors had told me there was a ten percent chance of miscarriage with chromosomally screened embryos, but that only told me odds, not causation. Since the chances of something being wrong with the embryo were so low, my mind began to drift towards the likelihood of there being something wrong with me. I had been hearing a lot about the immune system’s role in miscarriage, and I was home to a wonky immune system. Fifteen years ago, I was diagnosed with Celiac, an autoimmune disease, and even with my strict adherence to a gluten-free diet my body continued to act unreliably. Could my previous successful pregnancy have been a fluke? Were my immune issues the explanation to everything, the infertility and miscarriage? I hadn’t yet looked into treating this as immune issue and began to wonder if I should.
Internet searches yielded two types of doctors working in the reproductive immunology field. The first, and more common of the two, had their own private practices, high fees, and ran a lot of tests that my doctor at a major research institution and large, well-established clinic had never mentioned to me. Chat boards were filled with messages of praise and condemnation for these men—they were all men. Then there were a handful of doctors associated with hospitals who appeared more modest in their approach. I liked what I read. I didn’t like the fact that I couldn’t get an appointment for seven months.
I had once brought up reproductive immunologists with my doctor early on in my treatment and received a fluttering of the lips ending with a single-word response: “Quacks!” I tried again, post-miscarriage, and the response was a softer version of the same. “Most of what they say just isn’t based on evidence, but we will check you out for a blood-clotting disorder. Though I don’t suspect that is what happened here.” He was right about the blood-clotting disorder and yet, my curiosity was not satisfied. What if he was, as some on the pro-reproductive immunology chat boards suggest, a short-sighted dinosaur stuck in the protocols of the past? Or was he, as their critics would argue, a careful doctor unwilling to subject his patients to that which has not been proven to help, and could possibly hurt? I, of course, couldn’t ask him this, so I turned to journalism, my trade, to help me figure this out.
I tracked down and eventually spoke to a number of highly regarded physicians across the country and their thoughts on the matter could be boiled down to this: Does the immune system play some role in conception? Probably. Does the medical community know how? Not really.
“The first problem with all this is that every pregnancy should be rejected according to the theory of immunology,” Dr. William Kutteh, one of the few doctors working in the field who is a reproductive endocrinologist with a PhD in immunology, told me. “It’s 2016 and we still don’t have a full understanding of how pregnancies do not get rejected by body.”
He explained that things certainly happen to the immune system in pregnancy, during which it becomes simultaneously, and confusingly, more tolerant and weaker, or suppressed. But doctors and researchers are still unsure as to how this works and whether the immune system can be manipulated to increase the odds that an embryo survives. In other words, yes my miscarriage could have been the result of my immune system gone awry—and no, the current set of treatments geared towards tweaking the immune system in favor of pregnancy weren’t likely to help me.
In addition to my conversations with Kutteh and others, I also scoured the Internet in search of non-anecdotal evidence, which is to say no chat room testimonies, on these therapies. I learned a little bit about the history of this approach, which was popularized by the controversial late American doctor Alan Beer. He thought that natural killer cells (NK)—cells, which usually destroy cancer cells and viruses—could target a fetus. It’s a compelling theory. It’s also never been proven.
Whatever appeal reproductive immunology still held for me at that point was done away with by my discovery of a meta-analysis, which concluded that “NK cell analysis and immune therapy should be offered only in the context of clinical research.” This point echoed a lot of what I heard from doctors: we need to keep researching the immune system’s role in fertility while still being honest about what has, and has not, already been discovered.
After learning all this, I asked Kutteh why he thought so many women still turn to these unproven, and potentially risky, methods.
“There are a lot of women like you out there, and you read up on things and want to try it,” Dr. Kutteh said. “And sometimes these women will get pregnant. But here’s the thing: if I told my patients that the key to getting pregnant is running around the block naked, a lot of them would get pregnant and they would think I was the greatest thing.”
“Also, there are a lot of people who are not willing to wait for the research because by the time it comes around their time [to conceive] will have passed.”
He and others I spoke with wanted to clarify that there are many doctors and researchers working in the reproductive immunology field who are respectable and doing good work. It’s some of the clinicians, including many with name-brand practices and high fees, who they believe patients should be wary of.
After learning all this I did not, as you have likely deduced, opt to see a reproductive immunologist. Instead, I decided to stick with my mainstream protocol and three months later I had another embryo transfer, this time following a natural rather than a medicated cycle, and am currently eight months pregnant with a boy. No steroids, altered diets, blood thinners, or running around the block required.
The best advice I received about infertility treatment, from someone who had gone through it before, is to understand that these doctors can do a lot, but they know very little. During the first few months of my treatment I found myself frustrated by the many shrugs instead of answers I got from my doctor when I asked him why this or that was happening, or how exactly this or that worked. But with time I came to realize that this was a sign of humility, one that I should feel grateful for rather than frustrated by. For all they can do in reproductive medicine—and, boy, can they do a lot—much mystery remains. Allowing myself to accept this easily frustrating, yet indisputable fact was one of the best decisions I made.