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.

Counting kicks, AKA how not to lose your mind during PAL

It’s 7:00 on a Monday evening. I’m suffering from a small cold, tired, and mentally whipped following my third trip to labor and delivery earlier that day due to concerns over possibly decreased fetal movement (during which everything, once again, checked out OK). There are many things I could do. Head into the kitchen to help Zack with the dishes. Play games with Zoe. Collapse into bed. But I’m rooted to the dining room chair, unwilling to move from my spot, because the baby is kicking up a storm. And I’m afraid that if I get up, he’ll stop, and I’ll start worrying again.

Welcome to pregnancy after loss. When you’re so focused on monitoring fetal movement that your mind plays tricks on you and the slightest pause or decline can send your levels of anxiety skyrocketing. When you wake up in the middle of the night and don’t fall back asleep for hours, because you’re paying attention to how your baby is moving. When you can’t take a nap, because the baby is moving and you’re monitoring the movement, or your baby is not moving and you’re waiting for him to start moving again. When you’re constantly afraid that your baby has died or is about to die. When most of the people in your life fail to comprehend how much of an ordeal it is just to make it through the day, and you start to feel even more isolated on this Planet Where Your Baby Died.

6 kicks, 10 kicks, your baby’s pattern—what’s a mom to do?

Now into the mix let’s throw a heaping a dose of confusion and disagreement over what constitutes normal fetal movement.

Here’s what the American Pregnancy Association has to say on the topic:

The American Congress of Obstetricians and Gynecologists (ACOG) recommends that you time how long it takes you to feel 10 kicks, flutters, swishes, or rolls. Ideally, you want to feel at least 10 movements within 2 hours. You will likely feel 10 movements in less time than that.

But over in the UK, the Kicks Count charity offers starkly different advice:

There is no set number of kicks you should be feeling, what is important is that you know what is normal for your individual baby. If you notice a decrease in your baby’s regular movement pattern contact your midwife.

There is a common misconception that you should be feeling 10 kicks over a set period, this is no longer recommended as all babies are different. You can find out more here about the origins of ‘count to ten’ and why it is not used. Baby’s movements can vary from 4 to over 100 every hour so counting to 10 kicks would be irrelevant for most of the population. It is important to know what is normal for your baby and report any change in that.

The organization further notes:

One of the greatest challenges is the lack of consensus on what is a ‘normal’ number of fetal movements and over what specified time frame. Fetal movements vary from four to 100 every hour and so definitions of reduced fetal movement based on counting less than 10 movements in two, 12 or 24 hours are unhelpful.

For a mum who usually feels her baby move 50 times over 12 hours, if the baby reduced their movements to only 20 it could be a sign the baby is in distress. However if she used the count to ten method, she would not seek help as she met the ‘recommended’ number.

Likewise a woman who usually only feels 8, may end up phoning the hospital unnecessarily every day as she never meets the ten required.

The other issue with fixing a set number of fetal movements is there is no way to know what a woman is classing as her baby’s movements. Because it relies on perceptions from individuals rather than an independent monitoring system, there may be major differences between what one mum counts as her baby moving and what another counts as hers.

Therefore the safest and most reliable method of monitoring baby’s movements is to encourage the mum to get to know her baby’s own pattern of movement. She will then be able to determine if her baby has a period of reduced or increased fetal movement.

Count the Kicks, an effort of the admirable Healthy Birth Day stillbirth prevention organization, recommends a sort of amalgamation of these recommendations, instructing women to count the amount of time it takes to feel 10 movements, noting that could be hours for some babies and minutes for others, and to call the doctor if there is any significant change in movement.

With all of these recommendations out there, the obstetric community seems to be all over the map in terms of the type of fetal monitoring they recommend to moms. After one of my visits to labor and delivery, the hospital sent me home with a paper that alternately recommends contacting your doctor if:

  • You feel a change in the number of movements
  • You feel fewer than 10 kicks in 2 hours after counting twice

Meanwhile, my MFM’s office, which is generally pretty with it when it comes to stillbirth prevention, sent me home with a piece of paper that contains such alarming recommendations as:

  • If you have felt NO MOVEMENT by 2:00 pm on any day, call your doctor for advice.
  • If you haven’t felt 10 movements by 8:00 pm, write down the number you actually felt and call your doctor for advice.

The paper also recommends to stop at 30 during kick counts and to look for at least 6 movements in one hour during your count; “if you do not get 6 movements during the second hour, call your doctor at once.”

What constitutes normal?

The recommendation of the Kicks Count charity seems to make the most sense to me (and indeed, the folks over at the Star Legacy Foundation inform me that the 10 kicks in 2 hours guideline is based on 30-year-old research that many believe was improperly conducted, while the UK guidelines are based on a 2009 study). It’s quite common for my baby to move more than 100 or even 150 times in an hour, so if movements suddenly dropped to 12 or 8, while technically more than the recommended number of 10 or 6, it would be a cause for alarm. I certainly wouldn’t wait until 2 p.m. without feeling movement to call my doctor, nor would I wait until 8:00 p.m. if I’d only felt 10 movements.

However, determining what is a “normal pattern” for my baby has been quite a challenge, simply because he is a human being and doesn’t move in exactly the same way or at exactly the same time every day. He can have active days followed by sleepy days, active mornings followed by sleepy afternoons, sleepy mornings followed by active afternoons, and so forth. Many kick count guidelines recommend drinking juice, counting after a meal, and/or lying on your side, but my baby’s response to these actions has been everything from kicking up a storm to stirring in his sleep. Sometimes at 8:30 p.m. he’s got the heebie jeebies and sometimes he’s deep asleep.

Consequently, I’ve spent quite a bit of time since the second trimester crafting a kick count strategy that minimizes my anxiety and maximizes the amount of control I feel over the outcome of this pregnancy (although I am the first to admit I haven’t always been successful in this regard). I wanted to share some of my tips here, in case other baby loss moms find them useful.

Choose a number that works for you. In the second trimester around 24 weeks, I would often count all day long, or frequently throughout the day, in order to build up some objective data on how much baby was actually moving and to begin to look for patterns. Although it helped me to see that the baby was much more active than I’d made it out to be in my mind, this was tedious and mentally and emotionally exhausting. At the end of the second trimester and beginning of the third, I cut back to four hourlong counts a day (first thing in the morning, lunchtime, late afternoon, and nighttime). Now I’m at the point where I’ve been monitoring for so long that I have an instinctive feel for when the “pattern” is off (and I’m also being seen by a doctor three times a week), so I’m more often doing 1-2 counts a day, and less frequently 3, depending on how much activity there is on a given day. On active days I am likely to do fewer counts.

The point is to pick an amount of monitoring that gives you the reassurance you need to get through the day without being in a constant state of panic. It’ll be different for every baby loss mom, I think. Some may find comfort in counting all day and some may be content with just one count. Do whatever helps you to feel more in control. You may need to play around with it at first, and you may find yourself adjusting as the pregnancy progresses.

I use the Baby Kick Counter by Michael Kale app, recommended by Christine over at the chickydoodles blog (in the App Store, you’ll find it when you search for “kick counter”). It allows you to count all day whereas other apps stop at 10. You can also hit a button to easily count for an hour or count to 10. And it charts movements for the past several hours and days, and logs all the results of your hourlong and 10 counts.

Find your prompt. As I mentioned earlier, kick count guidelines often recommend counting after a meal or some juice or while lying on your side. If that works for you, go for it! Personally, I am just as likely to get a count above 100 while sitting up in a chair on an empty stomach than while lying on my side immediately after dinner. Ditto with a count of 50, which is low for my baby. So unfortunately, I haven’t been able to rely on a consistent prompt.

Chart the data. At around 28 weeks I started a spreadsheet for recording kick count results. This is much more objective than relying on memory and also helps me to compare results and to see how much movement has been consistently increasing the past two months. With placental insufficiency the cause of Luke’s death, I’ve been on the lookout for a gradual decrease in movements over a period of days or longer. Having all the data in the spreadsheet allows me to better assess what’s going on.

Enlist a buddy. I report most of my kick count results to my husband. This is helpful for a few reasons. First, if a count seems low we can decide together whether to go in for monitoring. And it allows my husband to also be aware of how the pattern is developing over time, so that he has more context if movement starts to drop. This helps take some of the pressure off me and involves someone who can be more objective and rational and is not caught up in and worrying about movement 24/7.

Let sleeping babes sleep. When I first started doing kick counts, I would often wake the baby up if I thought it had been too long since the last movement. However, I’m now familiar enough with his pattern to know that he rarely goes more than 45 minutes without moving. Since I want him to be a good sleeper on the outside, I no longer disturb his sleep by trying to get him to move.

When in doubt, extend the count. Since my baby isn’t always active at the same time of day, I can’t always expect the same result each day. If I do a count and get a result that’s lower than normal, or simply lower than I’d like it to be, sometimes I will extend the count for another hour. Usually in that time the baby will wake up some and I’ll get a better result.

Dial up your doctor. Each mom will determine whether there is a change or “significant” change in pattern differently. For me, on occasions when I’ve gotten kick count results that are on the low end of normal, or when the period between counts seems sleepier than usual, or when the baby has gone longer than normal without a sustained period of activity, I’ve gone in for monitoring. (In my previous two pregnancies, I doubt I would have even noticed these subtle variations.) I’ve been doing this so intensely and for so long now that I know that each of these scenarios can actually be “normal,” and while I won’t say that I don’t start to panic and worry, I don’t immediately go to Def Con 5. I give it a little more time and if after a few hours I still feel something isn’t right, I pick up the phone.

The point is that in a pregnancy after loss, and really in a pregnancy in general, there’s no such thing as going in too frequently to have something checked out if it doesn’t feel right. And if your doctor isn’t on board with that, then he or she isn’t doing the job.

Having an itchy trigger finger can be exhausting, though, and lead to burnout. So I do think it’s helpful to establish guidelines for what you yourself feel is not normal for your baby. Unfortunately, no one can tell you what that is, nor will it always be crystal clear, especially if you have an independent mover. And that’s one of the things that makes pregnancy after loss so tough.

Celebrate your milestones. In a pregnancy after loss, when fetal movement is never far from the back of your mind, just getting through the day can be exhausting. I think it’s important for baby loss moms to celebrate the passage of their pregnancy. For me I do that with a simple highly visible sign on my dresser that notes the number of days until the next gestational week, as well as the number of days remaining until week 37.

I hope other BLMs find these tips useful, and pick the ones that work for them. In reading back through this blog, I realize it may sound like I’m somewhat functional and on top of things. The reality is that this is the most intense period of my life I’ve ever had to endure, and on some days completing just small tasks can be a struggle. It’s difficult to enjoy life when you’re on constant alert for whether your baby has died, or is about to die. And so while my carefully crafted kick count strategy helps me get through the day in a marginally functional way, the marking of yet another day off the calendar continues to bring sweet relief.

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.

Hiatus

I haven’t written a word for this blog in months, largely because I’ve been so busy with school that I haven’t had a lot of time to stop and think. Over the summer I enrolled in two back-to-back intense undergraduate classes, first in chemistry and then in biology. The classes were three to four hours long, every day, and I would then come home and spend the rest of the afternoon doing the readings and homework.

I then started grad school in late August. I enrolled in two classes, by far the most intense I have ever taken. Every week I read hundreds of pages of the textbooks and scientific papers. I also read three books, gave four presentations, wrote an 8-page research paper in addition to five shorter essays, and took four exams. In addition, I spent the fall completing master naturalist training through the state of Maryland. For 12 weeks every Monday, I took 6.5 hours of training at a local nature center on topics ranging from tree identification, mammals, and reptiles and amphibians to interpretation, stream ecology, and humans’ effect on the environment. I’ll be an intern for the next year and then graduate to certified master naturalist, putting my training to use volunteering at the nature center and working on local environmental issues.

So there’s all that, but truth be told, there’s another reason I haven’t been writing on this blog. In July I found out I was pregnant again, and I’ve honestly been afraid to write about it, or even to tell many people, for fear of jinxing it. I’m a rational, scientific-minded person and I know it’s ridiculous to believe in jinxes. But just like those commercials from the 80s (or was it the 90s?), this is your brain on pregnancy loss. Scrambled and fried with heaping helpings of paranoia, fear, and anxiety.

I’m currently 27 weeks and 1 day, and it’s another baby boy. I’ll write more in a future post about how the pregnancy has been going (in a nutshell, fine, with the exception of my mental state). In the meantime I’ve been jotting down a few of the things that have happened over the last several months and wanted to share them here.

When we found out about our miscarriage in April, the OB who delivered the news was not unsympathetic, but she was also very matter of fact. And the office seemed to immediately kick into a precisely programmed, finely tuned sequence of paperwork and scheduling and instructions. It wasn’t that they didn’t care at all, but everything just seemed so … routine. And miscarriages are way more common than stillbirth, so that’s understandable to some degree, but miscarriages are still a big deal when they are happening to you. And it doesn’t excuse insensitive behavior. At the hospital, the anesthesiologist commented on our private room, as if we had scored some sort of sweet deal. Then he remarked on how nice the weather was and that he couldn’t wait to get home so he could go outside. This was right after the nurse had forced me to state that the reason I was in the hospital was for a D&C following a “missed abortion.”

In the weeks to follow, we received far fewer cards, phone calls, and messages of support from family and friends than we did following Luke’s death. If there’s one thing I’ve noticed since joining this sad club of women who have lost babies, it’s that people seem to have far less empathy for those who’ve had miscarriages. Apparently it’s much easier to empathize with someone who’s had bad luck versus bad DNA.

With this pregnancy, I was at the dentist a few months ago and after I told them I was pregnant, the inevitable question came up of how many children I have. Since it’s a medical office I felt I had to give full disclosure, so I stated that my daughter is 3 and my son was stillborn at 37 weeks. This was the first time I had seen this dentist, and right away I didn’t much care for him anyway. He had perfect hair and seemed like just another 40-something, white male toolbag. This impression was confirmed by his response to my disclosure, in which he, without missing a beat, replied, “Aww, that’s too bad,” and then in the next breath, “I’m sure she’ll love the baby. My kids are 5 and 2 and they’re best friends.” Shut up, asshole. Take your perfectly spaced kids and go f yourself. My daughter can’t be best friends with my firstborn son. Because he’s dead.

When I was interviewing to get into the aforementioned master naturalist training, one of the questions was to describe a time where something didn’t go as expected and how I handled it. All I could think was, “Well, I was pregnant, and the pregnancy had supposedly been going fine, and I was three weeks away from my due date, and then my baby died. How did I handle it? I spent the next year-plus consumed by grief and anger and anxiety. So, I guess I handled it pretty shittily.” I can’t remember what answer I gave instead.

On a related note, I was eating lunch with some of the other students in the training program one day when this annoyingly self-absorbed 20-year-old decided to embark on an elaborate retelling of how he was once called to substitute in an intramural college soccer game and had to dash across campus to catch the bus. He attends Cornell and, in true Andy Bernard fashion, is always reminding us of that fact, and as he told the story I got the sense that this close call with the stupid soccer bus just might have been the most dramatic thing that has ever happened to him. There was more than one person at the table, so I was able to sneak away without being rude, stuffing down the urge to mutter, “Man, that’s soooo rough. There was this one time I had to check into the hospital to deliver a dead baby. That tooootally sucked.”

Luke’s first birthday in August fell on a Sunday. We visited him at the cemetery and added a few items to his box. We brought cupcakes, mostly for Zoe’s sake, and read a few books. Because I’ve lived and breathed his loss every day since he died, it honestly didn’t feel that much different than every other day. It just felt like a pathetic little commemoration, and I wish we could have done more to honor him.

More than a year after Luke’s loss, most of the people in our lives have moved on. Only a few hardcore carers still ask us how we are doing. Hardly anyone included his name on Christmas cards, which were full of cheery messages that failed to acknowledge how shitty and sad we might be feeling given the huge hole in our family where a 1-year-old boy should be.

After a year of needling our hospital to acquire a Cuddle Cot so families experiencing perinatal loss can spend more time with their babies, the hospital finally installed one. They ended up paying for it so we didn’t have to conduct any fundraisers, which was great on the one hand, but on the other hand, the other loss moms and I who’d been working on this weren’t really able to participate much in the endeavor in a way that would have allowed us to commemorate our children. The hospital didn’t even coordinate the cot into their annual perinatal loss ceremony for Pregnancy and Infant Loss Awareness Month—at which they released balloons, which I hate, and despite my asking them not to, so I didn’t/couldn’t even attend. Maybe next year I’ll organize a ceremony of my own.

We recently attended a birthday party for one of Zoe’s classmates. It was at one of those indoor bouncehouses where the kids run around like maniacs for an hour or two, then retreat to the party room and eventually collapse into a sugar coma. In the waiting area before we went back to one of the rooms, an old codger walked up to Zoe and one of her little friends. I think he thought they were sisters or something. But for some reason he asked Zoe, “And where’s your brother?” Zoe didn’t know how to respond, and in my mind, I told him, “In the f’in ground. Now shut the f up and go away.” Why do so many old people lack filters and common sense?

Until next time …

Rise up

You’re broken down and tired
Of living life on a merry-go-round
And you can’t find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
And I’ll rise up
High like the waves
I’ll rise up
In spite of the ache
I’ll rise up
And I’ll do it a thousand times again
For you [4x]

When the silence isn’t quiet
And it feels like it’s getting hard to breathe
And I know you feel like dying
But I promise we’ll take the world to its feet
And move mountains
Bring it to its feet
And move mountains
And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
For you [4x]

All we need, all we need is hope
And for that we have each other
And for that we have each other
We will rise
We will rise
We’ll rise, oh oh
We’ll rise

I’ll rise up
Rise like the day
I’ll rise up
In spite of the ache
I will rise a thousand times again
And we’ll rise up
High like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousand times again
For you oh oh oh oh oh [3x]

—Andra Day

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.

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.