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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6 thoughts on “Girl in the war

  1. Well written. I love this album and song also and it is appropriate. Doctors are not that helpful. I was lucky to find a good urologist to help me. I am with you on your quest. Keep searching!

    Liked by 1 person

  2. This is such a well written post. You’ve included so much good information here, which I’m sure will be helpful to anyone who stumbles upon it.

    I’m so sorry about your first Dr. H. But I’m so glad you connected with your second Dr. H. Your first Dr. H’s behavior is appalling. I wish I could say it is also surprising. It seems as though when it comes to placenta and cord issues most in the medical profession want to look the other way – I don’t know if the main issue is they’re more concerned about legal ramifications than they are improvements? Or maybe they view 1/160 (26,000/year) as an acceptable rate? Or maybe they’re too drained by their daily job responsibilities to care about advancement within the field? Or maybe all of these factors and more?

    It’s so sad… These babies deserve better. And the 1/160 rate isn’t acceptable, especially when your family ends up being the one, which is the case for thousands of parents each year… I too wish everyone could put their egos aside and work to find a solution. Seems as though it would benefit everyone. Not sure why so few seem to care about an issue more prevalent than many to which we devote more attention/research funds… Beyond frustrating.

    While I’m so sorry you’re in this position at all, I’m so inspired by the research you’ve done and answers you’ve sought and your generosity with sharing it. Sometimes I think (hope) our voices on the internet will help drive change. If people see our stories maybe it’ll empower them to advocate harder with their doctors, therefore pressuring the doctors to step up?

    Also, thank you for including Matthew’s name. ❤

    Xoxo,
    Christine

    Liked by 1 person

    • Of course! These days I’m not sure if I believe in an afterlife, but it helps to think that wherever they are, they have found each other and are together.

      Of the things you listed about doctors, I do think it’s somewhat a combo of all three, but other countries don’t seem to have these problems to the same extent even though their doctors are also overworked and stillbirth rates are lower. So that leaves me to believe that it’s mostly because of #1. Doctors don’t get in trouble if they follow the standard of care, so they only follow the standard of care – which makes ACOG the culprit, as you have so eloquently pointed out.

      But also some doctors are just assholes with enormous egos who don’t want to share the sandbox!

      Sometimes I feel as though I’m writing into the ether, but if even one person who reads this feels empowered to challenge her doctor and that saves her baby’s life, then it’s worth it. Thank you for all you have done to raise awareness of these issues and empower and inspire all of us ❤

      Like

  3. First and foremost, thanks for including my girl.

    I went through some very similar conversations. Due to Lydie’s constriction in her umbilical cord, dr. Collins suggested that we ask for measurements of Josephine’s – at both insertion sites and throughout the whole length of it. I interviewed several MFMs and one actually laughed when I suggested that. He said he refused to take data that he didn’t know what to do with. And that there are no standards for cord width. I argued if we saw a construction we could monitor more closely but it’s just like you said – at what point then would doctors decide delivery was the best option? I ended up working with an MFM that showed me much more respect. I still had to argue about cord measurements but he was willing to study it more in depth.

    It’s so ridiculous. I appreciate the work star legacy is doing (hence, planning Lydie’s Loop which has been a stressful undertaking) but it’s not enough.

    Also I LOVE JOSH RITTER. I even have a picture with him!

    Thinking of you and Luke.

    Liked by 1 person

    • Of course! Though how I wish that I didn’t have to include any of our children’s names in this sad club. … I thought of you and Christine when writing this post and the struggles you’ve had/did have getting the doctors to look at the cord pathology. It seems like an overwhelming issue to tackle and I don’t know how we can begin to fix it (other than one case at a time), but other countries like the UK seem to have it figured out so maybe one day the US can too? I dunno, it’s so depressing. Thank you for doing what you can to help change it – I’m sorry that’s been so stressful ❤ … How did you meet Josh Ritter?!?!

      Thinking of you all …

      Like

  4. One of the things I dislike on WordPress is not being able to message people individually. You have been on my mind heavily the last few days; every time you cross it I just whisper a prayer. I hope you are alright….well as alright as we can ever be; know that you are thought of.

    Like

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