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.

 

Six weeks

Wyatt turned six weeks old on Thursday. I’ve been debating about sharing too much about his birth and life on here as I want to protect his privacy. But here are a few things I thought I’d relay.

Both Zoe and Luke were born vaginally, and Wyatt was a planned induction, but he ended up being delivered by c-section. On ultrasounds, his head had consistently been measuring above the 99th percentile. He was also crooked in the birth canal. So when his ginormous head met by pelvic bone, it couldn’t get past. I was in immense pain by that point thanks to pitocin, which can induce incredibly strong contractions, and after over an hour of pushing (and six-plus hours of contractions) I just didn’t have anything left. Unfortunately, the epidural didn’t take full effect until I was being wheeled back to the OR. Then it took like four hours for me to regain full feeling in my lower body.

The rest of our two-plus days in the hospital passed in a haze. He had jaundice, and while he didn’t have to go under the special lights, he wore this weird glowing pad/blanket thing under his swaddle, so we called him a glow worm. For a while he was making these little critter-like sounds, so we also called him a guinea pig.

I’m incredibly proud to say that he is exclusively breastfed. With my daughter, I had low milk supply and had to supplement with formula her entire first year, which isn’t the worst thing, but it wasn’t how I envisioned my breastfeeding experience. With Wyatt, we have also encountered a fair number of roadblocks, which I may detail in a future post, but nonetheless I have been able to maintain sufficient production. I say this not to boast, as I have endured the pain of low supply in the past, but because I am proud of myself for persisting.

I’m not a particularly materialistic person or much of a consumer, and clutter stresses me out, so I’ve never had a traditional baby shower for any of my kids, and I’ve passed on a lot of the traditional baby items that people purchase. For example, we never had a true diaper bag for Zoe. We used a big black bag whose origins I don’t recall. But then the handle broke. For Wyatt, we’d been using a bag that a nonprofit sent us as thanks for a donation, but it’s a little smaller than I’d like and doesn’t have many compartments, so I found myself drifting to Etsy to order a real, actual diaper bag for which, like everything on Etsy, I paid way too much. I’ve also ordered a few pairs of pajamas that he doesn’t need and a couple of nursing tops that, truthfully, I don’t really need. I’m not really sure where these impulses are coming from, other than to reward myself for enduring the incredibly difficult experience that is pregnancy after loss, and to celebrate in some small way the birth of my rainbow child, which I had previously been too scared to celebrate.

With both of our living children, my husband and I have found humor to be a great coping tool for the intensity and stress of the early newborn days. Hence, when he cries over something like being slightly jostled or having his diaper changed, we pretend we are Wyatt and say indignantly, “Why would you DO that?” Or when he starts crying, it’s fun to shout, in my best George Costanza voice, “I’m gettin’ upset!”

Speaking of stress, I think that postpartum depression is something that needs to be addressed more honestly in the baby loss community. No one wants to admit that they are overwhelmed or stressed by caring for the rainbow baby they so desperately wanted and wished for, or that they feel trapped in an endless cycle of feeding, calming, and diaper changes, with no hope of ever returning to a sense of normalcy. I had these feelings with Zoe, and while they have existed to some degree with Wyatt, and caring for two children simultaneously is an adjustment, I have much better coping tools this time, and I also have Zoe as proof that eventually it all does stop and get easier. Still, I think it’s important for a loss mom who is caring for her first living child to be comfortable acknowledging these feelings, and not feel a lot of guilt and shame in the process.

Wyatt is already in three month clothes, and we just had to adjust his car seat, and he no longer smells like a newborn, and the past few days, he has been giving us adorable huge grins, and staring at lots of things in his surroundings. So he’s already growing up fast, and just like everything with raising kids, both living and dead, time passes so quickly, even when it seems like a lifetime.

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.

Foam on the grass

Sometime in the moments after my OB, staring at the ultrasound screen, softly uttered the words that are frozen in my brain—I’m afraid it means the baby has died, in answer to my question of what it meant that there was no heartbeat—she turned to me and said reassuringly, assuredly, that most women who experience stillbirths go on to have living babies; having more than one stillbirth is incredibly rare, even more rare than having just one. (Oddly, she never actually used that word, stillbirth; I had to put it together myself after I began to grasp that I would still have to go through labor.)

The MFM doctor we were whisked to immediately after, to confirm that Luke had died, said much the same thing: To have multiple stillbirths is extremely rare. Many women go on to have normal pregnancies? I asked him. Most do, he replied.

Sometime in the weeks after Luke’s death, I read another baby loss mom’s blog about being treated as “low risk high risk” by the staff at her MFM; her second child had died of an umbilical cord knot. She was pissed about being treated this way, but I remember thinking, OK: Low risk high risk—I can live with that; I like the sound of “low risk”; that lessens my anxiety.

And I saw the statistics. About 1 in 160 pregnancies (0.5 percent) end in stillbirth, defined in the U.S. as a loss after 20 weeks of gestation. Of those stillbirth moms, fewer than 1 in 100 have more than one stillbirth. You probably won’t get hit by lightning twice. And I have a healthy daughter, who was born at almost exactly 40 weeks after an uneventful pregnancy. Plus, on the way to the hospital, we saw rainbows by the side of the road, twice, and days later I learned the term rainbow baby means a child born after a loss. And so, from somewhere deep in the dark grief, a little kernel of hope sprouted.

All of that was robbed from me the day I received the autopsy results.

In the medical literature, massive perivillous fibrin deposition and its associated conditions are described with bluntly dire language such as “high recurrence,” “severe consequences for the fetus,” and “associated with stillbirth” and a host of other issues including miscarriage and intrauterine growth restriction. In the face of such odds I questioned whether I should even try to have another child. On top of so many other secondary losses (friendships, my job, my innocence), it was devastating to think another pregnancy might not be in the cards.

Then in early January, we went to see Dr. Harvey Kliman, a placental pathologist at Yale, to talk to him about his review of our placental sides, and a teeny, tiny seed of hope was reborn.

How a placenta normally functions

As Dr. Kliman explained it, one of the placenta’s many roles is “to immunologically appear to be invisible to the mother”: to protect the fetus, via cells known as trophoblasts, from attack by the mother’s immune system. Otherwise, the maternal immune system would reject the baby’s foreign tissue in the way that it would attack tissue transplants from an incompatible donor.

Dr. Kliman noted that the ability to distinguish self from non-self is an evolutionary advantage predating life on land by hundreds of millions of years, and that even single-celled sponges, if mixed together, will separate back out into themselves—”they know what is me and what is not me.”

Why placentas occasionally fail in this role is poorly understood because scientists don’t yet understand how a normal placenta is able to function in this immunologically invisible way. In the 1950s, Medawar described this as “the paradox of pregnancy”: the puzzle of why most animals, and humans in particular, don’t reject their pregnancies. As Dr. Kliman said, “We have this pregnancy inside of a woman when really everything that’s made about her is designed to not let that happen.”

From four weeks on, the developing embryo and its support organs take on a structure that can be likened to a plant: the embyro is the plant, the maternal blood is the soil, and the placenta is the root system, with the “soil” circulating between the root fingers, known as villi.

The maternal blood is in constant contact with the villi, much like water circulating around your fingers if you put your hand in a bucket of water. Crucially, one of the trophoblast cells’ many functions—in addition to manufacturing steroids, absorbing nutrients, and expelling wastes—is to prevent this blood from clotting, like deicing a wing; “there’s constantly deicing going on,” Dr. Kliman said.

The grass analogy

Some trophoblasts also leave the placenta, enter the maternal blood circulation, and destroy the walls of the maternal blood vessels in order to open them up and allow for more blood flow. In some cases, for genetic reasons the trophoblasts don’t perform this function, resulting in such low flow to the placenta that the tissue actually dies.

Dr. Kliman compared this to grass dying after a sprinkler system is shut off. “You have brown grass, but you have nothing in between the grass.” In Luke’s case, he said, there was “foam on the grass”: the fibrin, or clotting material, that built up in the placenta. Not only was the placenta infinitesimally small, at the 0.01 percentile (meaning smaller than 99.9 percent of the placentas in his age group), it was only 5 percent functional.

“This is not turning the sprinkler off,” Dr. Kliman. “This is, someone has covered the whole grass with a foam that doesn’t let any light in, no water, and the little leaves are just stuck in this gluelike stuff. … The intervillous space was just obliterated in this placenta. There were very few places for the mother’s blood to interact with the fingers.”

On the slides, Dr. Kliman noted that the villi had branched in an effort to obtain more surface area and more contact with my blood, in the way that a plant growing in low light will become long and spindly. He also found evidence that Luke, incredibly, had made his own blood cells in response to lower oxygen delivery. “I think that’s just a testament, if you will, to how healthy he was, in the sense that even though he was in such an adverse environment, he really managed to survive so well for so long.”

Luke was also abnormally large compared to the size of his placenta; a normal fetus-to-placenta ratio is 6:3, and his was 7.8:1. Despite his tiny placenta, Luke himself was still in the 10th percentile. “I think it’s an amazing thing that he made it that far,” Dr. Kliman said.

Villitis versus intervillositis versus MFI

Dr. Kliman also clarified the diagnosis as MPFD/CHI. Whereas the pathology report from the hospital had referred interchangeably to MPFD and maternal floor infarction, the latter signifies fibrin deposition confined to the maternal floor, or the area where the placenta attaches to the uterus, whereas in Luke’s case fibrin was found throughout the placenta.

He clarified the difference between conditions associated with MPFD. In villitis of unknown etiology, the villi themselves are attacked by the mother’s T-cells, the tissue-recognizing cells that reject foreign tissue. While there was a little of that happening in Luke’s case, Dr. Kliman said he believes it to be closer to intervillositis, an attack on the cells between the villi. All these conditions are part of a spectrum, and while it wouldn’t seem to matter which specifically I had, it’s important to note that villitis can be treated with immunosuppressive therapy, whereas intervillositis cannot.

Because I have a healthy daughter who delivered normally at 40 weeks, Dr. Kliman suggested that the etiology in Luke’s case may have been an immune response to his particular genetic makeup, citing a case of twins where one baby was immunologically attacked by the mother and the other was not. “The genetics of that particular fetus was expressing something that caused [the attack] to happen and the other one was not,” he said.

Although autoimmune disorders can be implicated in MPFD cases, Dr. Kliman said it’s unlikely I have one. When I asked about antiphospholipid antibody syndrome, which can be asymptomatic, manifesting only in pregnancy, he said it’s overdiagnosed.

Dr. Kliman was careful to express repeatedly that Luke’s death was not my fault. When I noted that Luke appeared to be of normal weight at his 32-week growth scan—suggesting to me that the condition had kicked in sometime after 32 weeks—he pointed to a recent study on how common it is for ultrasound technicians to overestimate fetal weight (resulting in pressure on mothers to deliver by C-section). “This was a process that I’m sure was happening from the very beginning of pregnancy,” he said.

Treatment for a subsequent pregnancy

We spoke at length about a treatment plan for a subsequent pregnancy. Because immunosuppressive therapy doesn’t work in cases of intervillositis, Dr. Kliman suggested starting with one baby aspirin per day from the beginning of pregnancy, to prevent clotting. I would start low molecular weight heparin, which can also prevent clotting, only if the same problem started to present itself, as there may actually be no issues in the next pregnancy, if in fact the immune attack in Luke’s case was a response to his particular genetic makeup. “If the placenta is normal size, there’s no indication in my opinion to do something that has some risk to you, and heparin is low risk but not zero risk,” Dr. Kliman said.

I’ll also be receiving more frequent ultrasounds in a subsequent pregnancy, for which Dr. Kliman wants to use the estimated placental volume technique he developed with his father. This simple set of measurements of the placenta’s width, height, and thickness can be compared to normative curves for placentas of the same gestational age. (Unfortunately, ultrasound technicians normally don’t measure the placenta or the umbilical cord; the standard of the care in the U.S. is to “follow the fetus” and the fetus only.)

“You did extra nothing in the second pregnancy and you made it to 37 weeks,” Dr. Kliman said. “That pregnancy would have survived if we would have known beforehand and we delivered you. So we can at least do that for you. But I think we can do a little better. We can at least have better growth and be aware of it. If we see nothing and there are no problems, then we just continue to follow you. If there’s another very small placenta, I would not go to 37 weeks.”

Dr. Kliman noted than in cases of renal failure, the kidneys can go all the way to a 90 percent loss of their units because the remaining 10 percent are operating at 500 percent efficiency. “This is how all organs that have many little units fail,” he said, likening the scenario to pregnancy. “The problem is this crash,” he said, as he drew a graph with a straight line that plummeted at the very end. “We want to see that we’re going down this pathway. If you’re only looking at this axis, which is the fetus, everything looks OK right until the very end. So we need to understand what’s happening here”with the placenta, pointing to the line before the crash.

Ray of hope

I’ll write a more detailed post when I have some time, but our visit to Yale on Tuesday yielded unexpected hope and cleared away much confusion. Dr. Kliman clarified the diagnosis as massive perivillous fibrin deposition, not maternal floor infarction, related to inflammation (intervillositis) of the placenta’s intervillous space, caused by invading white blood cells from my immune system. In maternal floor infarction, the fibrin, or clotting material, is limited to the area of the placenta closest to the mother’s side. In my case, fibrin built up throughout the intervillous space, obliterating it.

For some reason not clearly understood by science, in cases like mine the placenta fails its job of keeping the baby “invisible” so that the mother’s immune system doesn’t attack it, as any mother’s would otherwise do. Dr. Kliman felt the condition was present from the beginning of the pregnancy and not one that developed toward the end, as I had previously written. He also doesn’t believe an autoimmune disorder was involved and thinks it was a response to Luke’s particular genetic makeup—which helps explain my prior uncomplicated, full-term pregnancy.

Dr. Kliman had hope for a subsequent pregnancy as Luke fared well and strong under the circumstances despite a small and failing placenta, as evidenced by his weight, his survival to 37 weeks, and the fact that he even tried to make some of his own red blood cells. We discussed treatment and monitoring methods and his research, and for the first time in a long time I felt I had met a medical professional who truly cares and is trying to make a difference.