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.

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Now we lay them down to sleep

Although we we enter Luke’s room every day to read Zoe bedtime stories, since the rocking chair is located there, in many ways it’s a museum, largely untouched since he died, frozen in almost exactly the same state it was in the days and weeks before our world changed forever.

His name still hangs on the door, essentially the way I drew it and the accompanying graphics in the week or so before his death, though I’d left the space for his middle name blank; Zack and I wouldn’t decide on that until we were at the hospital. (I also obviously added the quotes about stillbirth later.) Meanwhile, to this day, the board containing our goals for the week broadcasts a to-do list for parents who thought they were about to have a living child: Finish hanging things in the nursery, pack the suitcase with the going-home outfit for the baby, get the breast pumps together.

We’d added decals to the walls and space images from an old calendar to his closet doors. An “It’s a boy!” balloon from a baby shower (now deflated) hung on the closet to welcome his arrival.

We assembled the crib, which later became a dumping ground for all the boxes and detritus I simply don’t have the energy or desire to do anything with. It also holds the blanket we wrapped him in at the hospital, colored with precious drops of his blood.

We dragged up the baby swing from the basement. My mom had sent all the clothes Luke would need for the first six months of his life. I’d washed, folded, and sorted them all, and set aside extras.

While I’ve been able to look at the rest of the things, the clothes for me were the most heartbreaking. Partly because they mostly came from my mom, and signified her love for her yet-to-be-born grandson, but also because dressing a newborn baby is one of the few ways you have to build a bond in those early days of nonstop feeding, crying, and diaper changes. The clothes represented a connection I would never have with Luke, especially since I didn’t even think to take any of them to the hospital. He was naked and bare beneath his blankets, and I never got the chance to even once dress him.

So in the past nine months, I haven’t been able to bring myself to even open the drawers. That changed recently when a fellow baby loss mom, Joan, started collecting pajamas to donate to bereaved parents and their children at her local hospital in Maine. I feel a special connection to Joan because her daughter, Maeve, was lost late in her pregnancy to villitis of unknown etiology, a very similar condition to Luke’s in which Joan’s immune system attacked the placenta, resulting in large, fatal clots.

So today, for the first time, I was able to look through all of the clothes and pick out a few to send to Joan. While I did shed tears, I also felt light come into my heart knowing the purpose for which the clothes will be used.

Here is the text of the notes I included (I also enclosed the lyrics to Pink’s “Beam Me Up”):

To my friends in grief,
     How I wish that you did not have to be opening this card, but I hope that this sleep set brings you a small measure of comfort, knowing the love and intention with which it was carefully packed. It would have been one of my son’s first pair of pajamas—a gift from his doting grandma—but he was born still on Aug. 21, 2015, just three weeks shy of his due date, following a seemingly normal pregnancy. It has been crushing for me these past nine months to look at his clothes and know that he will never wear them. But it brings light to my heart knowing that this sleep set will be used to protect and warm one of his fellow angels. It is my greatest dream and desire that, wherever they are now, they have found each other and are playing together with much love and happiness somewhere on the other side of the rainbow.
     You are likely still in shock from your loss, and a part of you will always be. This sorrow will change you forever. You will never be able to live in or view this world in the same way again. The despair, anger, and regret at times will seem Iike they could swallow you whole. But I am here to tell you that although you will never be done grieving and this wound will always remain, it is possible to find a way forward, and times of laughter and happiness will come again. And you will find a way to still be a parent to your child, by incorporating them into a special place in your family life. You will always, always hold your precious baby in your heart, and nothing can ever change that.
      I am wishing you moments of light and love, and I am here for you any time you need it.

 

I don’t know if I will ever be able to use the clothes to someday dress a living baby. In the meantime, I have plans for a few more of them. And I plan to leave the nursery the way it is, at least for now. Although it’s a painful monument to our now-destroyed innocence, it also one of the few things that connects me to Luke. And that I’ll hold onto for as long as I can.

P.S. If you would like to participate in Joan’s pajama project, email me at lukesmom0821@gmail.com and I’ll hook you up.

Gone too soon, part two

 

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. —Bene Gesserit litany against fear, Dune

I had three ultrasounds in this most recent pregnancy, at eight weeks, nine weeks, and 10 weeks. In my car, driving to each one, I recited the above passage from Frank Herbert’s classic 1960s sci-fi novel. And then, I would visualize myself sitting in the ultrasound room, tensely waiting for the doctor to speak as she searched and searched on the monitor. In my visualization, eventually she would turn to me and say the dreaded words, “I’m sorry; there’s no heartbeat.”

Each time in the car, and a couple of times between appointments, I forced myself to let this visualization play out, to imagine the shock and despair that would follow, to feel the world reeling again after the loss of another baby, the life draining out of me. And surprisingly, just like the litany says, this calmed my fear every time. Somehow, letting the moment unfold in my mind allowed me to feel a degree of control over the situation that quelled what would otherwise have been paralyzing anxiety.

Nonetheless, I was relieved when, at the first appointment, there was a heartbeat, though I wouldn’t say I was happy. And it was a strong heartbeat, at 162. The dating was a little off and the pregnancy was a few days younger than it should have been—7 weeks, 5 days, instead of 8 weeks, 3 days—but my OB did not seem concerned.

A week later was my first appointment at the MFM. I visualized the same no-heartbeat scenario, but again there was a heartbeat, even stronger this time, at 174. The dating was still off, but the MFM, Dr. H., did not seem concerned either. She also hooked me up with a new prenatal vitamin and extra folate to address my MTHFR mutation (inability to completely process folic acid to folate, needed to prevent blood clotting).

On Monday, April 25, my visualization came to pass. The day before, I had noticed a very small amount of spotting. It was so small that I was not overly concerned and decided to just monitor it; many women experience spotting with no harm to their pregnancies. Monday morning, there was again a small amount of spotting, so I called the OB and asked to come in to be checked, as spotting wasn’t something I had experienced with my other children.

Zack wasn’t with me when I found out Luke had died, so this time I waited in the OB’s parking lot for him to make the hourlong drive from his work. As I waited, for the third time, I went through the visualization exercise.

Inside, after what seemed an interminable wait, we made it back to the ultrasound room. When I finally got on the table and the OB (not my usual doctor) started the scan, there was a long pause while she searched and searched. It was then that I knew my worst fears had been realized, because it shouldn’t have taken her that long to see anything. And indeed, when she finally did speak, it was to say that she had brought up the color flow on the monitor and could only see my heartbeat. (Oddly, she chose to say that “the pregnancy had stopped growing,” which confused me enough that a few minutes later I had to confirm with her that the baby was dead.)

We were shuttled to the ultrasound specialists across the street to confirm the loss. The pregnancy, which should have been 10 weeks, 3 days, was dated at 9 weeks, 2 days. We then proceeded to the hospital outpatient wing for the D&C. What followed was a lot of waiting. We sat in the hospital waiting room for almost an hour, and the preop room for another hour.

Eventually, nurses came to draw blood, fill out paperwork, and start an IV. I was asked several of the same questions multiple times by different people—including why I was there, which felt like rubbing salt in the wound but apparently was just an effort to make sure I was consenting to the procedure. One of the times, I couldn’t get the words out, so the nurse answered for me, “For a missed abortion.” Ouch. (Side note: Women with a history of miscarriages are referred to clinically as “habitual aborters.”) I then had to wait another hour before being wheeled to the operating room, where the last thing I remember was an oxygen mask being lowered onto my face.

Coming out of anesthesia, it seems, is a bit like being drunk. Apparently I asked the doctor when I could exercise again, a question of which I have no memory. I remember at one point wailing, “My baby died” and “He was 37 weeks.” I must have asked one of the nurses if she had children, because I remember telling her, “Then I want you to know that you should appreciate what you have.” All of this took place with my eyes closed, and the people seemed very far away. At one point, someone announced that I was in the recovery room. Eventually the voices faded, and there was only one nurse remaining. I remember asking her, “Does anyone care about my loss?” To which she answered, “We all do.” Later she came to my side, grasped my arm, and said, “I want to tell you that I know how you feel.” I don’t remember what she said after that.

Today, 15 days later, I am still processing what happened. I’m all griefed out, and I don’t have any more space in my heart for the grief to come in and swallow me whole again. So, it comes in drips and drabs. I’m finishing up the spring semester and preparing for the first of two summer sessions to start in three weeks. I’m dusting off my resume and planning to secure some freelance editing work. I’m attending a climate change protest in D.C. I’m canning chickpeas and hoping to pick strawberries soon to can preserves. I’m watching Ken Burns’ miniseries on the national parks. And, here and there, I cry. In the car. In the middle of zumba. At Target, when I see the mom with her toddler and her newborn. When I see the pregnant lady who, frankly, looks like she has no business being pregnant. When people say, I’m here for you if I need it, but then never bother to actually reach out and just ask, How are you doing?

I never, ever, in a million years, thought this would be my life, especially after having Zoe at almost 40 weeks following a pregnancy with zero complications. But it is my life. So I’m slowly, against my will, figuring out how to live it.