Maternal floor infarction

On Thursday, Oct. 15, my doctor called with the results of my clotting disorder tests and Luke’s autopsy (clotting disorders such as a Factor V or Factor II mutation are one cause of stillbirths).

First, she said, all my labs came back normal except one. I have the xx mutation of the MTHFR gene, involved in metabolizing folic acid. It’s a common mutation, she said: “80 percent of the female population has it.” I would need to take baby aspirin throughout a subsequent pregnancy.

Next, the autopsy. “The baby was fine,” she said. “There was nothing wrong with him. It was the placenta.”

The cause, she continued, was determined to be an extremely rare placental disorder known as maternal floor infarction (MFI). (The condition may also be known as massive perivillous fibrin deposition, or MPFD, although at least one journal abstract I found seems to suggest that they are different conditions on a spectrum.) In any case, what happened was that a clot formed, resulting in placenta insufficiency: a placenta unable to sustain Luke. In the scientific language, fibrin (a clotting protein) built up in the spaces between the placental villi, the small fingerlike projections that we all learned about in health class. The placenta was actually 75 percent “infarcted.”

From the autopsy report: Massive perivillous fibrin deposition is a condition characterized by enmeshment of chorionic villi in a fibrinoid material and in placental insufficiency of various degrees. The perivillous fibrin deposition essentially strangles the chorionic villi. This in turn leads to a marked reduction of fetal blood flow in the affected villi and secondary stromal fibrosis. Thus, functional villi are reduced in number, and if the process is sufficiently large, placental function is compromised. The consequences include a significant risk of intrauterine growth restriction, intrauterine death, and preterm delivery.

“We do not know what causes it,” my doctor said, “and the downside is that it has a high risk of recurrence.” Around 30-32 weeks of a subsequent pregnancy, she said, I would be monitored more closely, with twice-weekly ultrasounds, and would be induced at 37 weeks (which was the plan anyway, before we knew the cause). “The ultrasound can show some things, but not everything,” she said; I would also have to be hyper-vigilant about kick counts, but in the end, we would have to leave things up to a certain amount of chance.

I reeled from shock. I had always figured the autopsy would come back inconclusive, or with some kind of freak cord accident. I knew the chance of having two stillbirths was incredibly rare, much more rare than the risk of having one (I think it’s like 2 percent of all stillbirth moms go on to have a second stillbirth), and it never occurred to me that a subsequent pregnancy would really, truly be high risk and that my rainbow baby could be just a fleeting dream. Suddenly I was launched into the grieving process all over again, and now trying to figure out how we could decide whether to try to have another child.

After digesting this information for a few days, I contacted the Star Legacy Foundation for Stillbirth Awareness. In online searches for both maternal floor infarction and massive perivillous fibrin deposition, I had found mostly technical journal abstracts, nothing much written from the lay perspective or by other mothers in the same situation. I asked the foundation if they had any information on the condition(s) written for a lay audience. To my surprise and eternal gratitude, they responded within hours and forwarded my inquiry to two members of their board.

The first, placental pathologist Dr. Mana Parast of the University of California, responded with a recommendation that I be screened for autoimmune conditions such as lupus and antiphospholipid antibody syndrome (a clotting disorder). She said if an autoimmune condition is indicated, she has known women treated with low molecular weight heparin or other treatments during subsequent pregnancies who delivered healthy babies (and normal-looking placentas).

Then she mentioned that she might question whether the cause was MFI, and not instead a condition that can mimic MFI called villitis of unknown etiology (VUE), in which the mother’s immune system attacks paternal antigens on placental cells. It can also be associated with fibrin deposition in the placenta. The recurrence rate is high, just as for MFI (up to 50 percent in subsequent pregnancies), but there is no treatment.

Since I had a normal pregnancy with Zoe, she questions the MFI diagnosis, unless Zoe had undetected fetal growth restriction or I developed an autoimmune disease after that pregnancy. On the other hand, VUE, she noted, gets worse with subsequent pregnancies (i.e., “mom’s immune system is now alerted to the paternal antigens, so she’ll fight them back faster”).

We are in the process of sending samples of my placenta to a Yale pathologist, Dr. Harvey Kliman, also recommended by the Star Legacy Foundation. Hopefully Dr. Kliman will be able to give us a definitive answer as to MFI/MPFD or VUE, and we can go from there.

Star Legacy also connected me with Dr. Alexander Heazell of the UK’s University of Manchester, who has created “rainbow clinics” to work closely with parents to plan and deliver subsequent pregnancies. Dr. Heazell was in a radiology residency program when his child was stillborn, and he changed his focus to OB/GYN, dedicating his career to finding answers. He didn’t have much to add to what I already knew, but it gave me hope to hear that his clinics have yet to lose a rainbow pregnancy.

In the meantime, I have a number of questions swirling around my head—ones I can’t seem to find many answers to because a) I don’t want to shell out hundreds of bucks for a journal subscription, and b) the disorder is so rare and so poorly understood that there aren’t many journal articles on it to begin with. Among my questions:

  1. MFI is associated with central nervous system (CNS) injuries and “adverse neurodevelopment outcomes” such as cerebral palsy. What impact does treatment (aspirin, heparin) have on the risk of such outcomes?
  2. Is VUE also associated with such outcomes?
  3. Are MFI and MPFD truly on a spectrum? What does that mean for my situation? Where am I on the spectrum?
  4. In the case of MFI, does treatment eliminate or merely reduce the risk of another stillbirth?
  5. What exactly is the risk of recurrence with MFI?
  6. Does my MTHFR mutation have anything to do with MFI? I’ve seen other women with MFI say they were prescribed extra folic acid (not sure if they meant folate) in subsequent pregnancies; is this because the MTHFR mutation is somehow related?
  7. Is MFI/MPFD related to a clotting disorder, an autoimmune disorder, or both?
  8. I’ve heard that some women develop clotting disorders only in pregnancy—so even if I came back negative for Factor V now, maybe I would have it during pregnancy?
  9. Exactly which autoimmune diseases should I be screened for?
  10. Why the fuck is this happening to me?

Thanks to the kind folks at Star Legacy, I have some of these questions out to the placental pathologists and hope to hear more answers soon—and hopefully Dr. Kliman will also be able to clear a lot of this up for us. All I can do now is focus on the next step.

Is this normal?

In the beginning, people—often medical professionals—would assure me that some part of the grieving process was normal. You’re collapsing into tears every few hours? That’s normal. You don’t feel like getting out of bed? Normal. You can’t concentrate? Normal. You’re terrified that some other horrible thing is going to happen to you and/or your family? Normal, normal, normal. And in my head, I would reply, Normal? F– you. Nothing about this is normal. Babies of middle-class, healthy, college-educated moms in wealthy countries aren’t supposed to die in the third trimester. That ain’t normal, sister.

Fast forward nine weeks or so, and hearing the words that’s normal now brings comfort. Bursting into tears at a witnessed casual moment or stray remark, feeling extreme jealousy or anger, experiencing tiny bits of happiness or normalcy followed by a day or morning of crushing sadness—my fellow baby loss moms have been there and done that. That’s normal, sister, they tell me.

So. Nothing about this fucked-up, twisted, dismal world, this planet where I Delivered a Dead Baby, is normal. And everything is.

Arms of the angels

Lullaby for a Soldier (Arms of the Angels)

May your dreams bring you peace in the darkness,
May you always rise over the rain.
May the light from above always lead you to love,
May you stay in the arms of the angels.
May you always be brave in the shadows
till the sun shines upon you again.
Hear this prayer in my heart
and will ne’er be apart,
May you stay in the arms of the angels.
May you hear every song in the forest
and if ever you lose your own way;
Hear my voice like a breeze
whisper soft through the trees.
May you stay in the arms of the angels
May you grow up to stand as a man, love
with the pride of your family and name.
When you lay down your head
for to rest in your bed,
May you stay in the arms of the angels.

-Maggie Siff

Trajectory of grief

On the first day I Delivered a Dead Baby.

In the first week I wept and retreated to my cocoon. Somehow, I knew I would survive.

In the second week I retreated to the beach. The loss seemed so close, and so far away.

In the third week I kept busy with appointments. Numbness and grief, numbness and grief.

In the fourth week I crumbled. Depression and anxiety set in. I didn’t want to get out of bed, let alone figure out how to survive. We also watched a comedy and laughed harder than we’d laughed in months.

In the fifth week I became consumed by replaying events over and over in my mind.

In the sixth week I found out horrible news that had nothing to do with Luke’s death—and everything to do with it.

In the seventh week I began making plans for the future, trying to keep the fear and uncertainty at bay.

In the eighth week I learned some of those plans may never come to fruition. It felt like things crumbling all over again.

Today, I begin my reentry into “normal” life. Trying to focus on what’s right in front of me. Keep one foot in front of the other. Just keep living. Surviving.

Response from the hospital, part 2

I spoke to the perinatal loss coordinator at the hospital yesterday.

  1. I was never supposed to be moved to a different floor after the delivery. That only happens if the family requests it.
  2. We were supposed to receive a piece of paper with Luke’s name, weight, length, and handprints. They told us his length but I don’t remember what it was, and it’s not listed on the death certificate.
  3. Cuddle Cots are cooling units designed to fit inside Moses baskets so that grieving families can spend as much time with their babies as they want without having to worry about further decomposition of the body. If we’d had a Cuddle Cot with Luke, we could have spent a lot more time with him and gotten many more photos, in addition to being able to bathe and dress him. Many U.S. hospitals are installing Cuddle Cots, and I told the perinatal loss coordinator that I wanted to raise money to place one in my hospital. She said four or five other mothers have offered the same thing, and her supervisors have nixed the idea because of—get this—fears about infection. So it seems that we have a lot of education to do there.

So, those are the unfortunate facts.

Balloons blow

October is Pregnancy and Infant Loss Awareness Month. There are photo projects on social media for bereaved parents. News stories profiling families who have endured unimaginable losses. Viral clips about parents who have bravely shared photos of their stillborn babies with the world. And there are balloon releases.

This is where two of my worlds collide. As an animal advocate and a bereaved parent, I cringe every time I see a balloon release advertised in one of my support groups. Releasing balloons—so-called “biodegradable,” Chinese lantern style, or otherwise—has devastating impacts on wildlife. An animal can starve to death when she eats the balloon and it blocks her digestive tract. Or she can become fatally entangled in the ribbons. Turtles with “bubble butt” float unnaturally and dangerously due to gas formed when balloons and other marine debris decompose in their systems.

There are alternatives to balloon releases, and I’ve seen responsible owners of some of the support groups promote those and try to educate members about the ugly side of balloons. Unfortunately, even when the education is gentle, some people feel attacked and the discussions can get brutal.

My hospital is having a balloon release next weekend. My heart sank when I got the postcard in the mail. For a long time I debated whether to broach the subject with them. But I had other issues to settle with them first. After much deliberation, I decided to skip the event and talk to them about balloons next year.

In the meantime, if you want to honor Luke Wyatt or any other child lost to stillbirth, miscarriage, or infant death, please don’t release a balloon. Instead, light a candle. Blow some bubbles. Plant a tree. Don’t pollute our already wasted earth even further. We only have one of it.

Photo courtesy of Balloons Blow

Graphic courtesy of Balloons Blow

Figments

I just finished reading a stillbirth memoir called Exact Replica of a Figment of My Imagination, by a woman named Elizabeth McCracken. And I haven’t experienced the replica part yet (the author had a rainbow baby), but I know exactly what she means by the title.

I carried my child inside of me for 37 weeks, made hopes, dreams, and plans, got sick more times than I could count, peed in cups for months, had a baby shower, decorated a nursery, tossed and turned night after night so I wouldn’t sleep on my back, told my daughter she would be a big sister—and after all that, I have nothing to show for it except a gravestone and an empty heart. I Delivered a Dead Baby and yet the world continues to spin on its axis. Receptionists can still be kind of rude and no one gives me the grieving mother discount.

And so sometimes I wonder, did I dream the whole thing up? Five years from now, 10 years from now, 30, when few people will even remember Luke’s name, will I ask myself if he was just a figment of my imagination? If those 37 weeks ever even happened?

Luke won’t grow up to be someone, won’t influence others with his personality, skills, and kindness. He won’t be eulogized as the coach who always took the time to stay after practice and help the struggling soccer player, the dad who showed his kids how to do math homework, the scientist who made great cancer-defeating discoveries. Except for a few grainy ultrasound photos and a cruel piece of paper certifying his death, there is no proof that he ever even existed. Even on the hospital records, I’m listed as the patient; his name appears nowhere.

What I do have is the many, many photos taken during our pregnancy. These memories are the only thing stitching together his brief life. I look at them and think about the woman behind the camera. Her baby was alive and she thought that in a few months or a few weeks or a few days, she would have a son, a second child. She was innocent and unaware. She was happy.

DSC_0002

In February, Zoe proudly revealed the news to family.

Zoe bday

We celebrated Zoe’s second birthday, once in Kentucky, once in Maryland.

Annapolis

My family came to visit and we spent a day in Annapolis. We hung out with dogs, gawked at million-dollar yachts, cruised the Severn River, and strolled the capitol grounds.

swingset

We spent a few weekends in the backyard assembling a swingset. Zoe has mostly outgrown the infant swing, but we ordered one anyway. For Luke.

nursery

I took Zoe plant shopping. I remember holding on to Luke as the nursery volunteer drove us back to our car in a golf cart, the back laden with flowers. We spent many hours outside in the garden that spring.

Chicago collage

In Chicago in May for our babymoon, we traversed the city, visiting vegan meccas, walking the Miracle Mile, geeking out at the planetarium, taking in Chinatown, strolling parks, and watching the Nats beat the Cubs. A few times, we lamented how this would be our last vacation for a while, as we didn’t relish the thought of taking a trip with a toddler and a baby.

caterpillars

We spent a lot of time in the garden, stalking caterpillars.

I can’t see Luke in these photos, but in my memory I know he was there. They’re all I have to hold onto, now and for the rest of my years.