25 years ago just before Halloween

There’s a story on the Huffington Post today focusing on miscarriage: Six Women Remember the Babies They Lost. The timing on this story is particularly relevant to me, and the topic is personal.

Twenty-five years ago this weekend I had the first of four miscarriages. At that time there was even less support than there is today for women suffering such losses. I remember trying to talk to people — friends, family members — and being gently told to put it behind me. You’ll have another baby. Focus on the positive. The most common response I got was awkward silence.  I needed to tell someone what had happened, but no one wanted to hear. There were no support groups. There was very little in print. There was no internet and no way to find women who were as isolated as I was in my anger and sorrow.

It seems that finally this may be changing a little, and so I’m taking this chance. Here’s the story I didn’t get to tell.

This was my second pregnancy, planned so that the new baby would come just about the time our daughter turned three in the spring of 1992. I got pregnant as soon as we started trying, and I remember thinking that maybe this time it wouldn’t be so traumatic. My first pregnancy was complicated when I went into labor at twenty six weeks and spent the next two and a half months on bed rest, rousing every three hours to take a medication to keep my contractions down to one every half hour, and shuttling back and forth between home and triage at the labor and delivery unit of the University of Michigan’s Women’s Hospital. In the end we went home with a healthy baby. Going into my second pregnancy I told myself I could handle it if it happened again.

At eleven weeks I got out of the shower and noticed an odd rash on my side. I drew a picture of it because it made me anxious.  

At twelve weeks the rash had almost faded away, and I began spotting. Two days later an ultrasound confirmed that the baby’s heart had stopped beating. They sent me home to wait, because they believed medical intervention was not strictly necessary. The standard line was something like your body will take care of it.

I asked about the rash, and showed them the drawing. They shrugged. No way to know, they said.  Nobody seemed to think it was relevant to the miscarriage. 

Halloween, age two

I did as I was told. This was right before Halloween, so for two days I waited and tried to function normally. A  two year old who was excited about her costume and trick-or-treating was a pretty good distraction, but not good enough. We went on a hayride and got a pumpkin. It was very cold in Michigan, so when I got teary I could put my gloves to good use and get rid of the evidence. At night I worked on an elf costume because I couldn’t sleep anyway. She came to sit on my lap in the morning and patted my face. She said, “Kiss it better?” 

I said, “Yes please,” and she kissed my cheek and went away to admire her costume. There was a Hannah Andersen cap — too costly, really, but I got it and added pointy felt ears and a pompom and bells. Very solemnly she considered this thing I had labored over for so long, and then politely declined to wear it. I remember thinking, I should be disappointed. But I couldn’t figure out how to feel anyway about it at all.  

Two days after Halloween I was still spotting, heavily.  I called my midwife and said I couldn’t stand it anymore, I wanted a D&C.  She promised she would talk to the doctor on call at the hospital.

A short while later that doctor called me back. She said, It would be better to let your body take care of it. I was hardly coherent at that point but I was beyond caring what kind of impression I made. Finally  she said, Oh, I get it. You want a D&C for your mind.  They scheduled a D&C for two days later. No, they couldn’t get me in any sooner. Did I want some medication to help me sleep in the meantime? I did not.

Then the next day, very suddenly, my body did in fact take care of it, and left us with a small being curled into itself, maybe two inches long, that I managed to catch before it landed in the toilet. I sat there for a long time considering. Then I went out and showed my husband, and he cried, and I cried, and in the end we buried that would-be child in the back yard of the house we were renting and I remember thinking, how will we ever move away? 

Six months later I had another miscarriage, this time at nine weeks.  I started treatment with a reproductive endocrinologist who specialized in secondary infertility. He looked at my drawing of the rash and shrugged. 

I had four miscarriages in all, and then I stopped trying. There were other treatments that might have worked, but I couldn’t face any more losses.  At home I sat down with a very serious four year old and told her that I couldn’t have any more children. She was very angry, and insisted I go back to the doctor and tell him he was wrong. As much as we tried to protect her from the trauma of the miscarriages and infertility treatment, she absorbed a great deal of it with repercussions that are still felt today. 

Once the internet became more user friendly for medical research, I started searching dermatology websites and databases for photos of my rash. It wasn’t until 2008 that I found what I was looking for in a medical journal article that came out that year:

Drago, F. et al. Pregnancy outcome in patients with pityriasis rosea. J Am Acad Dermatol 2008 May; 58:S78.

I had an outbreak of Pityriasis Rosea very early in my second pregnancy. The 2008 study:

demonstrates a high risk for fetal loss and for neonatal weakness and hypotonia in pregnancies affected by PR during the early weeks of gestation. Clinicians should alert women who develop PR in pregnancy about the potential risks of this presumed viral infection, although there is no known effective intervention to prevent these complications. Nor is there a clear way to avoid this illness. The detailed study of the miscarried fetus suggested reactivation of HHV-6, rather than primary infection, based on observation in the mother of specific serum IgG antibody but no IgM antibody.

For weeks after I found this — and similar articles — I told my husband, but otherwise kept it to myself. I wasn’t in therapy at the time, but I doubt I would have brought it up to a therapist even if I had been seeing one.  Nobody wanted to talk to me about the miscarriages when they happened, I told myself. They probably forgot all about them. So why raise this subject? 

I’m interpreting the article in the Huffington Post as a cosmic push to record my experience for myself, for my daughter, and for other women who have been or will be in this situation. There’s no way to predict or prevent Pityriasis Rosea, but at least now a woman who loses her child because of it will not be left with questions nobody want to hear, and nobody can answer. I’m telling the story because while other people forget, I remember every one of my losses. I remember the day the bleeding started, the day the heartbeat stopped, and the empty birthday. I remember the look on the ultrasound technician’s face when she didn’t find what she was looking for. I remember my husband saying, what are we looking at? I remember thinking, nothing. We are looking at nothing. The absence of a heartbeat.

I remember that on the due date for that first loss, the most traumatic of them all, my sister-in-law called to say that she was pregnant.  I remember that I started spotting for the fourth and last loss on my daughter’s fourth birthday.  Every Halloween I remember that elf costume and the red cap that I bought, and how I planned to put it aside and use it for the next baby. 

Tomorrow is Halloween. We are out in the county on a dead-end road and never see any trick-or-treaters. And that’s a relief.