Total eclipse of the heart, placental results, and other ramblings

Luke’s second birthday is on Monday, the same day as the eclipse. We’re packing up the kids and our stuffed turtle and heading to South Carolina to hopefully witness the moment of totality, since in our area the eclipse coverage will only be about 80 percent. I ordered matching custom T-shirts for all of us so that we can represent Luke among the eclipse watchers.

When I first realized that Luke will be sharing his day with the eclipse, I was honestly kind of pissed, because I thought, how can he possibly compete with a TOTAL SOLAR ECLIPSE? An event that most of the US hasn’t experienced since I was in seventh (eighth) grade? But then I realized the power of merging the two occasions, of asking people to remember Luke, and all the babies gone too soon, as they are looking up and pondering the cosmos. I hope they take up the call.

Borrowing an idea from Sidney’s mom, I have also asked people to perform an act of kindness that day, for themselves or others, be it sleeping in, smiling at a stranger, buying someone’s coffee, donating to a cause they find meaningful, planting something for pollinators, lighting a candle, or writing his name on a special rock. And I’ve asked them to use his name, either to say it out loud or offer it silently as an intention as they perform their act of kindness. I picture these acts rippling out into the world with my baby boy, his sweetness and innocence and purity, at the epicenter. Especially in light of recent events, it’s a comforting thought.

It is, of course, hard to believe that it has already been two years. In that time I have quit my job, completed several semesters of community college, entered grad school, and became a master naturalist. Honestly, I am not sure that I would have done any of it if I hadn’t lost him. His death jolted me into reevaluating my entire life. It made me realize that there are way harder, scarier things than changing careers. That we have too little precious time to go after what truly makes us happy. That my family comes before everything.

In that two years I also had a miscarriage and somehow, by the grace of all that is good in this universe, a second living child. I lived through the most terrifying, the most anxiety-ridden, the most sleepless 37 weeks I have ever experienced. There is no fear like the fear of the unknown. Kick counting became so ingrained into my every moment that I thought for sure I would be reaching for my phone to log movements for weeks after Wyatt was born. But now, that all seems like a distant memory, though it does come flooding back if I reach deep enough. For months I injected myself with blood thinners and took supplemental folate. In the weeks after Wyatt’s arrival, it seemed like a milestone when I was finally able to stop those treatments. Now they, too, are a distant memory, though I still have the bruising on my belly to remind me of what I went through to bring my child into the world safely.

In May we received the results of Wyatt’s placental pathology. His placenta was normal! It was above the 75th percentile, and there was no evidence of an immune response. Either the treatment worked, or there was no immune response this time. We will never know.

One of the projects on my plate this fall is to add a section on this blog specifically for the resources I’ve gathered on these immune conditions in pregnancy (the MPFD/MFI/VUE/CHI spectrum). I’ll also be sharing the stories of other MPFD/etc moms. I’m contacted several times a month by readers who stumbled across the blog after experiencing an immune-related loss. There’s not much out there that’s written for the patient; it’s mostly dense journal articles full of despair, and the readers are seeking information—and hope. So I’d like to make this blog more of a resource, as one way to amplify the meaning of Luke’s life. Stay tuned.

How to honor a loss anniversary, and other thoughts

A local loss mom friend and blogger over at Surviving the Loss of Baby Sidney is approaching the first anniversary of her son’s death and recently sent an email to family and friends with suggestions for how to mark the occasion, including the following:

First, I am asking people to do something kind for themselves or someone else on May 4th. This can range from smiling at someone in the street or allowing yourself to sleep in, to donating your time or money to an organization that you believe makes a positive difference. I need to know that at least a little bit of good came from Sidney being part of the world for the short time that he was here.

Second, if you would like to, please send us a stone from a place that is meaningful to you, with a slight description of where you found it, so that I can put it at his grave (Jews traditionally leave stones when they visit graves of loved ones. While the reason behind this seems somewhat unclear, my favorite explanation is to indicate that the loved one is remembered and thought of, with an object that lasts longer/is more permanent than flowers).

Finally, do not be afraid to let us know that you are thinking of us, and to say Sidney’s name. Hearing Sidney’s name does not upset me–what upsets me is that he is dead. Instead, knowing that others remember him makes me feel like I do not have to carry him around in my heart alone. Lighting a candle in his memory (or sending us candles, trees, buying us stars, making a dedication in his name etc–I hope I have included everyone/everything) or simply reaching out to tell us that you remember him, has meant so much and will continue to mean so much.

I love the idea of doing something good in his name on that day, and wanted to pass it along as a suggestion to my readers for honoring any lost children that you know. I wasn’t aware of the Jewish tradition of leaving stones, but my daughter loves rocks and always leaves one at Luke’s grave, so I will have her pick one out for Sidney, and we’ll plant some flowers next to Luke’s bench in our garden as well, so our boys can be together.

In other musings …

The other day I was wearing a hoodie (before April suddenly turned to July) and in the pocket I found a memorial necklace that someone must have given me at some point, only I have no memory of receiving it. I received a lot of jewelry after Luke’s death, and it’s hard to keep track of who gave what, but I still feel bad about blanking on this one.

After spending so much time obsessing about fetal movement during Wyatt’s pregnancy, I thought for sure I would be counting phantom kicks for weeks after he was born. Strangely enough, though, that already seems like a distant memory, and I can’t even remember what the movements felt like, or what it was like to be chained to my KickCounter app.

Wyatt has been sleeping for longer stretches, and last night he slept through the night, until just after 5 a.m. So that’s obviously great if he starts doing that consistently, but now I also need to decide whether to throw in a middle of the night pumping session, because, well—holy boobies, Batman.

I took Zoe to her 4-year checkup last week, and when the nurse practitioner asked Zoe to list who lives at home with her, she named myself, my husband, Wyatt, and Luke, which made my heart swell, but then when I said, “Well, Luke lives in heaven,” the nurse practitioner said, “Awww, is that a pet?” and I wanted to punch her, but Zoe kept talking, and the moment passed.

I suppose it’s marginally better than my encounter at Zoe’s third-year checkup, when, after I informed the doctor of Luke’s death, she said she wasn’t aware that losses could occur that late in pregnancy.

At Zoe’s birthday party, while I carried Wyatt in a sling, I struck up a conversation with the mom of one of Zoe’s classmates. She is a perfectly lovely and sweet person, but I don’t think she knows of my loss, and she mentioned that Zoe’s friend was born when her daughter was only 2, and it was difficult to have two children of that age, and it’s so much easier to have a baby around when they are 4, and more independent. And I wanted to tell her that Zoe should have been 2 when her first brother was born, because normally I don’t have a problem telling people about Luke, but I just couldn’t figure out a way to bring it into this otherwise innocuous small talk, and so I didn’t say anything, which made me feel sad and also guilty, like I wasn’t honoring Luke properly. It also reminded me of how much of a gulf will always remain with other moms who haven’t experienced a loss, and how conversations can still catch me off guard, and break my heart.

Recently I’ve attended a few services at our local Unitarian Universalist congregation. I suppose I’ve been searching for something different, as our current church didn’t provide any support when Luke died, and his death also further cemented my agnosticism, wherein it’s difficult to believe in a God who would allow children to die, but it’s also difficult not to believe that some kind of being was responsible for this amazing, incredible universe. Anyway, the UU church actually cares about things like climate change, and people’s suffering, and everyone is really friendly, and the pastor (is that what you call him?) this past weekend gave a sermon (is that what you call it?) addressing a racism controversy among the higher ups of the national organization. His openness was refreshing and something I’m not used to. So I like it there, but when it comes to spirtuality, basically I am still kind of wandering.

 

Five days

Our induction is scheduled for Thursday, March 9. We have five days to go. I have spent the entire pregnancy not knowing whether we would make it this far. Now that we have, I find that the huge burden of responsibility for another’s life still has not been lifted from my shoulders, even though I am seeing one doctor or another three times a week. Monitoring of fetal movement still rules my life, and my brain. And in that regard five days seems an eternity away.

And also, the end of this pregnancy is bittersweet. This is my last pregnancy. Feeling their babies move is what many mothers cite as their favorite part of pregnancy. And it has been mine as well, and there are definitely times that I savor the movement, but I hate that it has also become such a source of fear and anxiety, something that most moms in “normal” pregnancies, oblivious to the fragility of life, will never experience. Just one more hard fact on this planet where my baby died.

My treatment plan

I’ve been pretty neglectful of this blog, but I wanted to share some details of the treatment plan for my current pregnancy, particularly for other sufferers of MPFD/MFI/VUE/CHI who may come across these writings.

As a refresher, the issue in Luke’s pregnancy was a condition known variously as massive perivillous fibrin deposition, maternal floor infarction, chronic hystiocitic intervillositis, and villitis of unknown etiology. Essentially, for some reason my immune system was able to recognize his placenta where normally it would be “invisible.” His placenta was also expressing something incompatible to my immune system, which consequently attacked the spaces in between the villi, the fingerlike projections of the placenta that are responsible for keeping blood flowing in the placenta. (In cases of villitis, the immune system attacks the villi themselves, but in my case immune cells were found between the villi, hence the intervillositis diagnosis.) As a result, massive clots built up in the placenta (AKA massive perivillous fibrin deposition) and by the time Luke was born, the placenta was in the 0.01 percentile, meaning it was smaller than 99.99 placentas of the same gestational age.

MPFD et al. is characterized in medical journals as incredibly rare and poorly understood. It’s not understood why the placenta isn’t being kept invisible or what genetic factors make the placenta and immune system incompatible—i.e., a simple blood test from Mom & Dad & baby won’t predict whether the doomed combination is present (the placenta comes from paternal DNA, and interestingly, there is a significant history of stillbirth on my husband’s side of the family, for which we don’t know if there is any association). MPFD is said to have a high chance of recurrence (I’ve seen as high as 67 percent), but in truth the condition is so little studied that the actual percentage of recurrence is basically unknown. I belong to a couple of different support groups for MPFD and I’ve met women who’ve lost multiple pregnancies to the condition, including miscarriages, women who’ve had only one loss (often sandwiched in between successful pregnancies), and everywhere in between. There has been some development of a therapy that would suppress the immune system response, but it’s not really available in the U.S., and while it has shown good early results, there hasn’t been enough research to validate it as the treatment of choice. As a result, most of the treatment focuses on treating the clotting that could arise from an immune system response, although some women opt to go on no treatment at all, since the clotting treatments haven’t always proven successful either.

In my case, I found out through testing after Luke’s death that I have a common copy of a mutation in the MTHFR gene, which aids in clotting prevention. Something like 75 percent of the population has this mutation. But given the MPFD diagnosis and this additional information, I decided with my doctors and Dr. Harvey Kliman, a placental pathologist at Yale, to begin taking baby aspirin (81 mg daily) as soon as I had a positive pregnancy test. At around 10 weeks I began seeing a maternal fetal medicine specialist, who also prescribed a prenatal containing folate, as well as additional folate, since those with the MTHFR mutation are unable to properly process folic acid, which is contained in most “regular” prenatal vitamins.

I also had clotting tests redone at around 10 weeks, since some clotting disorders can arise only during pregnancy, and was indeed found to have a deficiency in the Protein S clotting factor. Thus I began a daily self injection of enoxaparin, the generic version of Lovenox, a blood thinner similar to heparin. I started at a dose of 40 mg/ml and was retested periodically to make sure the levels were still high enough in my blood, since enoxaparin is a weight-based medication. At 29 weeks, I indeed had to increase the dose to 60 mg/ml. At 33 weeks, I was retested and remained on the 60 mg/ml dose. I will come off the enoxaparin 24 hours before scheduled induction at 37 weeks, and then I’ll need to go back on it for about a month after delivery so that I myself do not develop clots.

For monitoring, I did a bunch of genetic testing at around 11 weeks (through which we learned the gender), the first growth scan at 18 weeks, and an ultrasound every 3 weeks thereafter until about 24 weeks, at which point I switched to biweekly scans. At 28 weeks we began monitoring blood flow to the baby by measuring Dopplers, and we also began biophysical profiles. All of the scans are done at the MFM’s office, since they have much more powerful machines than my regular OB’s. At 32 weeks I also started weekly nonstress tests at my doctor’s. At 34 weeks the BPPs will increase to twice a week.

I started regular kick counts at 24-25 weeks, earlier than what is medically recommended, but what I needed to do for my own sanity. I’ll write more about that in future posts—I have a lot to say on the matter. Since 28 weeks I have been to the labor and delivery unit at the hospital five times for concerns over possible decrease in fetal movement. So far, each time, we’ve passed the NST and BPP with no problems and checked out within two hours.

Although the baby’s growth, Dopplers, NSTs, and BPPs have all come out looking great at every scan, we still have no way of knowing whether the placenta will start to fail in the last few weeks. We have a lot of information on this pregnancy, but we don’t have the information from Luke’s pregnancy to compare it with, since he was on the routine monitoring for “low-risk” pregnancies, which included a mere two ultrasounds and regular measurements of fundal height and heart rate. Luke’s last ultrasound was at 32 weeks and everything appeared fine, and while we can never be sure whether his condition was present from the very beginning of his pregnancy and may have been detected with more intense monitoring, we do know something went catastrophically wrong between 32 and 37 weeks.

Consequently, at the advice of my MFM, just before 33 weeks, I had two doses of steroids (betamethasone, AKA CElestone) to aid in the baby’s lung maturity should I need to deliver before 37 weeks. Unfortunately, one of the possible side effects is decreased fetal movement, which I did indeed experience, triggering a hefty amount of PTSD and sending me on a late-night trip to L&D within eight hours of receiving the second shot. He performed beautifully on his NST and BPP and I was sent home to monitor movements and see if they picked back up, which thankfully they did.

To sum up, my treatment plan consists of:

  • Baby aspirin, 81 mg daily, taken at night (stopping at 36 weeks)
  • Self-administered injection of enoxaparin, 60 mg/ml, once daily (stopping 24 hours prior to delivery and resuming 24 hours after delivery, for one month)
  • Vitamed MD (prenatal with folate)
  • Metanx (extra folate), 1 pill twice daily
  • Other supplements (DHA, Vitamin D, probiotics)
  • 2 rounds of steroid (betamethasone/Celestone) administered 24 hours apart to aid in lung maturity in case of delivery before 37 weeks
  • Regular growth scans, increasing to twice weekly at 24 weeks (at my insistence)
  • Biweekly Doppler measurements and BPPs at 28 weeks (in addition to growth scans)
  • Weekly NSTs at 32 weeks
  • Twice-weekly BPPs and Doppler measurements at 34 weeks
  • Intense monitoring of fetal movement (AKA kick counts all day, every day)
  • Acupuncture and psychotherapy

I wish I could say something sarcastic or witty or wry at some point here, but the truth is that all of this has been as overwhelming and daunting as it sounds, and I’m basically spent at this point. Which is why, when people ask me how I am feeling, I wish they would ask me how I am doing, because, while it seems trivial, that phrasing acknowledges an understanding on the part of the questioner that this is no normal pregnancy in which physical discomfort is the biggest complaint, and that crippling fear and anxiety are the main beasts, to be wrestled daily. So there you have it.

Girl in the war

Peter said to Paul you know all those words we wrote
Are just the rules of the game and the rules are the first to go
But now talking to God is Laurel begging Hardy for a gun
I got a girl in the war man I wonder what it is we done

Paul said to Peter you got to rock yourself a little harder
Pretend the dove from above is a dragon and your feet are on fire
But I got a girl in the war Paul the only thing I know to do
Is turn up the music and pray that she makes it through

Because the keys to the kingdom got locked inside the kingdom
And the angels fly around in there but we can’t see them
I got a girl in the war Paul I know that they can hear me yell
If they can’t find a way to help her they can go to hell
If they can’t find a way to help her they can go to hell

Paul said to Peter you got to rock yourself a little harder
Pretend the dove from above is a dragon and your feet are on fire
But I got a girl in the war Paul her eyes are like champagne
They sparkle bubble over and in the morning all you got is rain
They sparkle bubble over and in the morning all you got is rain
They sparkle bubble over and in the morning all you got is rain

—”Girl in the War,” Josh Ritter, The Animal Years

I originally planned to call this post “My Doctorate Is Bigger Than Your Doctorate.” But after recently listening to Josh Ritter’s ballad—one of the most-played songs on my Luke playlist—I realized that the song, though originally about the Iraq War, could also apply to my last pregnancy, when I apparently unwittingly stumbled into the middle of a latent war between researchers and obstetric practitioners.

My first exposure to this dueling doctor syndrome came in February when I was attempting to set up a preconception consultation with Dr. H., the maternal-fetal medicine (MFM) specialist affiliated with my OB. It was shortly after our trip to see Dr. Harvey Kliman, a placental pathologist at Yale, and I was armed to the teeth with information about my placental condition and potential treatment options, including having estimated placental volume (EPV) measurements taken throughout the pregnancy, a technique developed by Dr. Kliman to help detect signs of trouble.

I traded several messages with Valerie, Dr. H’s assistant (all through the receptionist, since Valerie doesn’t have voicemail), before finally managing to speak to her on the phone, a conversation in which she promised me that Dr. H. would be calling me sometime after 4 p.m. in the next two to three days. I waited dutifully by the phone for a week, but the call never came. At this point, I was so frustrated by all the futile attempts to reach Valerie that I just gave up.

Then I got pregnant, and it was time to schedule the first ultrasound at the MFM. As I was talking to Valerie—again, after several attempts to reach her—I asked her if the office would be able to do the EPV measurements on ultrasound. She then informed me that the doctors at the practice didn’t think they needed to do the EPVs but would talk to Dr. Kliman, and that “That’s not for you and me to worry about; that’s for the doctors to hash out together.”

I was stunned—the only thing more condescending would have been if she’ dethrone in the words your pretty little head—and I’m not sure anything coherent came out of my mouth, but the conversation in my head went something like, Really, Valerie? My last baby died at the end of his pregnancy when I was receiving very little monitoring, so frack yeah, it is for me to worry about. And I may not have a PhD, but I’ll bet I know more about my diagnosis than anyone in your stupid practice.

* * * * *

A few days later, I actually got a call from Dr. H. I was completely taken aback because I’d given up on actually hearing from him directly. I was in the middle of making dinner and totally not prepared for his call. He basically repeated what Valerie had said: that they weren’t going to do the EPVs because they just don’t do that in his practice. He then proceeded to brag about his “12 years” in practice and how he had never had a patient with recurrent term stillbirth. He also made a disparaging comment about Dr. Kliman, asking, “Does he sit in front of an ultrasound machine all day? No, I don’t think so.” To which I replied, but only in my head, OK, but do you look at diseased placentas all day?

Since I have more than 15 years of experience in my field, I wasn’t super impressed with his barely a decade in practice. After a while of listening to him blab, without getting much of a chance to speak, I finally interrupted to explain that the condition in Luke’s pregnancy has a high rate of recurrence, that I’m not in the category of stillbirth moms who don’t really have to worry about it happening again, and that the placental volume could be an important clue to the state of this pregnancy because Luke’s placenta was so incredibly small.

Dr. H. was obviously in the car, and after I gave my little speech, he suddenly seemed in a big hurry to get off the phone, so he quickly agreed, at my request, to at least talk to Dr. Kliman and also said he would talk with another perinatalogist at a nearby university to see if that doctor would do the EPVs. Then just like that, the conversation was over.

* * * * *

A few days later, Dr. H. left me a voicemail in which he was clearly chewing food and stated that he’d spoken to the other perinatologist, who also wasn’t willing to do the EPs. He ended the message with something to the effect of “No one in our community does EPV” and “if you want the EPV done, you will need to find another practice.”

I was then left to make the decision of whether to stick with this MFM and forgo the EPVs, or try to find a different MFM who would do the EPVs, without having advanced knowledge of high-risk pregnancy monitoring and which observations and techniques are truly critical. After talking to the helpful folks at the Star Legacy Foundation and my therapist, I came to the realization that regardless of the EPV question, this MFM had been fairly awful to deal with: difficult to get ahold of, condescending, and disrespectful to not just me but to a researcher at a prestigious university with many years of experience and a clear desire to help bereaved families.

I began to research other MFMs in the area and found one, also named Dr. H.—this one a female—who specializes in treating pregnant women with clotting disorders. While I do not have a clotting disorder per se, I figured her experience and knowledge would be applicable to my situation, since massive placental clots killed Luke. Luckily, at my first ultrasound with my OB, I found out that the new Dr. H. is one of the MFMs my OB works with.

I called the new Dr. H’s office and it was immediately a different experience, with a pleasant receptionist who quickly conferred with the new Dr. H. and the sonographer and reported back that they would do the EPVs (though not until after 20 weeks). At our first appointment, the new Dr. H. even said they have worked with Dr. Kliman’s patients before.

* * * * *

I’ve decided I’ll stick with the new Dr. H. in a future pregnancy, unless I can get enrolled in a study at a research hospital (something I’ll be investigating and may write about in a future post). So that part is settled, but the whole experience left me bewildered by and despondent about the state of the obstetric profession here in the U.S.

If researchers looking into a pregnancy condition—armed with reams of data from cases they’ve studied and research they’ve conducted in the lab—are developing methods to diagnose and treat that condition, why would practitioners be so resistant to implementing those methods in their everyday medical care, even if just on a trial basis? And even more so, I wonder, why would they resist when that condition is stillbirth? And when the method being proposed is 1) simple and quick to implement; 2) poses no harm other than to the practitioner’s pride; and 3) at the very least, will provide additional information that could be useful to managing the pregnancy and preventing another stillbirth?

If researchers work in a lab all day and doctors sit in front of an ultrasound machine all day, wouldn’t individuals from both environments have valuable perspectives to bring to patient care? And wouldn’t it benefit patients, and bring about happier outcomes, for those individuals to get together and talk about what they have seen, and to together come up with new treatments to test? And most of all, don’t doctors care more about saving lives than having their egos wounded by someone making a simple suggestion that there may be a better way to do things? Don’t doctors want to advance their professions? Or would they rather cling dogmatically to what they learned in academic settings long ago?

In speaking with Lindsey Wimmer at the Star Legacy Foundation, I learned that this kind of internecine battle is common in obstetrics. OBs don’t always think outside the box, and they prefer what’s been tried and true—even if it’s not all that true, or at least useful to preventing stillbirth. And there is some justification for this; admittedly, it’s not always clear what practitioners should do with any extra information they collect about placentas or umbilical cords. If a problem is detected at 28 weeks, for example, is it better to deliver right away, when survival is not guaranteed, or to take a gamble and wait a few more weeks, when the risks are fewer? There’s simply not enough clinical, real-life data for doctors to make these decisions, Lindsey says.

In the case of EPVs, the data Kliman has collected so far has been retrospective, looking at placentas from previous pregnancies and matching those up with outcomes. He is now trying to gather prospective data, in order to predict which placentas will be problematic. It’s not yet clear how critical EPVs could be in pregnancy monitoring, but we can’t answer this question without the cooperation of OBs.

* * * * *

And all of that is a fracking shame. In a recent Washington Post article tellingly headlined “Stillbirth is more common than you think and we’re doing little about it” (subtitle: “In the United States, there are more than 20,000 stillbirths each year, a rate worse than that of many other countries”), author and stillbirth mom Sarah Muthler writes that the U.S. ranks 25th in the world for stillbirths and “has made some of the slowest progress of any country in reducing stillbirths. Between 2000 and 2015, the U.S. rate declined by 0.4 percent per year, putting us at 155th out of 159 in the world. We were joined at the bottom by Chad and Niger.”

Unlike in countries like the Netherlands, where autopsies and placental exams are provided for free and a medical team reviews each stillbirth to pinpoint weaknesses in care, “the United States has no national system to report and evaluate stillbirths,” Muthler writes. And many parents opt not to shell out thousands of dollars for autopsies and genetic tests not covered by U.S. insurance companies, meaning crucial data is left uncollected.

Moreover, Muthler writes, “Stillbirth has not received the same interest [as Sudden Infant Death Syndrome] because the public underestimates its devastating toll and also tends to view it as inevitable.” People equate it with miscarriage—I myself have seen that firsthand.

In contrast, rates of SIDS declined 50 percent, Muthler says, after researchers figured out why it was happening and a government campaign galvanized doctors to educate parents about how to prevent it.

And yet, stillbirth is 10 times more common than SIDS, and no one seems to care. We have a fracked-up system here, people. In memory of Luke, Lydie, Matthew, Isobel, Larkin, Baby 2, Josie, Savanna, Meredith, Maeve, Eloise, Leo, Lily, Quinn, and all the countless other babies stolen by stillbirth, and in honor of the families left here on earth to grieve forever, we need to do better. And it starts with doctors setting aside their stupid silos and scaling back their enormous egos to get together in the same fracking room and figure out how to help their patients. It involves them working together to collect data on when things go wrong in pregnancy, so they can figure out what the hell they are going to do about it. It involves them being willing to listen to parents about new research and work with the experts they have found. It involves them acknowledging our losses and vowing that they never want to see it happen again.

I don’t want to be a girl in the war anymore. I just want my baby back.

0.01 percentile

In October, shortly after I found out the diagnosis of maternal floor infarction/massive perivillous fibrin deposition (basically, huge clots formed around the villi, the little fingerlike placental protusions that delivered nutrients to Luke, making them unable to function), I connected with the folks over at the Star Legacy Foundation, the only national U.S. organization dedicated to stillbirth awareness. They responded quickly and kindly and put me in touch with experts who answered a few questions; they also let me know about Dr. Harvey Kliman, a Yale University placental pathologist who consults on stillbirth cases.

We soon began working with the hospital to have slides from my placenta sent to Dr. Kliman’s office. On Dec. 22, I received Dr. Kliman’s report. (This is probably a post for another time, one in which I recount all the ways people suck, but the report was dated Dec. 2 and sent directly to my doctor, who never bothered to contact me; I only got the report after following up with Kliman’s office. My doctor has always been really nice and kind to me and that’s why I’m still with her, but I’m incredibly pissed about this. I had even taken the time to give her a heads up that the report would be coming.)

The gist of the report, and the finding that was new and shocking to us, is that my placenta was EXTREMELY small; Dr. Kliman even used all caps in his report, as shown below. It actually weighed less than the 0.01 percentile for his gestational age of 37 weeks. For those of you who have all but forgotten about your SAT scores, this means that 99.99 percent of placentas of the same gestational age, statistically speaking, are larger than mine was. Given this fact, it seems astonishing that Luke survived to 37 weeks, and indeed Dr. Kliman notes in his report that “the survival of this fetus to 37 weeks [was] remarkable.”

To me this seems to suggest that the placental clots must have formed rapidly, because there was no indication of this problem at Luke’s 32-week growth scan, and in fact at that time he measured large for his age. So some time between 32 weeks and 37 weeks something went very wrong. Unless the ultrasound technician royally screwed up—and there was a substitute working that day, a technician from a different office who wasn’t used to the machine—but I’m inclined to think that wasn’t the case, because at birth Luke weighed 5 pounds 6 ounces, which while small, to me doesn’t indicate that he’d had a super tiny, infintesimal placenta for very long. He was also quite the kicker and squirmer until the end.

Zack and I will be traveling to Yale on Tuesday to meet with Dr. Kliman, ask him all of our questions, and hear about his recommendations for a future pregnancy. Except that I don’t really have any concrete questions at this point, just a swirling hot mass of confusion and despair. I have a stack of printouts about MFI/MPFD that I made right after we received the diagnosis, but I haven’t been able to read through them because they are so technical and dire. It’s something I’ll have to bring myself to do in the next few days, but I’m not looking forward to it, as what little research I have done shows there’s not a lot of global consensus on how to treat these conditions—and everything depends on what the insurance companies will pay for anyway.

Speaking of which, Dr. Kliman in his report recommends for a future pregnancy a technique called estimated placental volume. It seems like a simple process in which the health care provider regularly measures the width, height, and thickness of the placenta. Because I’m now extremely cynical about everything, I’m not holding out much hope that I’d be able to persuade the doctors to do this, even the high-risk doctor I’d be seeing for regular ultrasounds. I’m sure it’s not approved by the American College of Obstetricians and Gynecologists, and I’m sure that without ACOG sanctioning, insurance companies won’t pay for it, even though it seems like it would be simple enough to grab those measurements while they’re already in there poking around.

I’m not even sure that ACOG has published standards for what size the placenta should be; I know they haven’t for the umbilical cord. Similar to Dr. Kliman’s EPV technique (and I’m just assuming at this point that it’s not ACOG-approved), a dedicated and courageous umbilical cord researcher named Dr. Jason Collins came up with a technique and equipment for monitoring babies in utero so that moms could be alerted right away when their babies are in distress, but he never got the doctors and insurance companies on board, and he could never find the funding to mass-produce the equipment, so it’s not even available anymore.

Anyway, I digress. The only small upside to Dr. Kliman’s report is that he doesn’t seem to think it was villitis of unknown etiology, as another expert suggested, which is somewhat more dire because it can’t be treated (it seems not even with anti-clotting agents, though I’m not entirely sure) and can worsen with subsequent pregnancies. However, the MFI/MPFD diagnosis suggests I may have an autoimmune disease, which is odd since I’ve never had any other kind of symptoms—and Zoe was born on time, with no growth restrictions. So one of the next steps, I’m sure, is to figure out what the fuck is up with all of that.

(From the report:)

This placenta was EXTREMELY small, weighing less than the 0.01 %ile for gestational age. There are three major causes for such a small placenta: decreased maternal perfusion of placenta, chronic maternal immunologic rejection or an intrinsic genetic abnormality. In this case there was a combination of decreased maternal perfusion, immunologic rejection, and massive intervillous fibrin deposition (as a consequence of the first two issues). Not only was this placenta extremely small in weight, only about 10-20% of the villi were functional, making the survival of this fetus to 37 weeks remarkable. The pathologic progression of this process can be seen in the images, with the top image showing evidence of intervillositis with monocytes, macrophages and lymphocytes. This progressed to total trapping of the villi in the middle image, followed by death of the villi in the bottom image. There was no evidence of genetic abnormality seen, nor evidence of an intraamniotic fluid infection. This condition can recur.

It would be useful in subsequent pregnancies to follow the placental volume using the Estimated Placental Volume (EPV) technique (see http://klimanlabs.yale.edu/placenta/epv/index.aspx) and if this recurs to deliver by section as early as is prudent for the fetus.