BY DR. STEPHANIE HART, MD CCFP
Moderator Introduction, by Dr. Sara Ahronheim
Trigger warning: Infant loss.
October 15 is Pregnancy and Infant Loss Awareness Day, and in fact the whole month of October traditionally is the time to remember children who have died. US President Ronald Reagan proclaimed October Pregnancy and Infant Loss Awareness month, in 1988, and Canada followed suit in 2005.
If you or someone you love holds this grief inside your heart, please know that you are not alone. If you need love, support, friendship or a (right now virtual) shoulder to lean on, please reach out. Here at CWIM we would be honoured to help you find the assistance you need.
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As I sat in a crowded waiting room, I spent my time surfing the internet on my phone. That sounds very normal, of course, in this age of electronics and text messages. It is probably very normal for most people, but not actually common for me. When stuck in a waiting room, a line-up, or any other useless activity where all I can do is wait, my normal go-to activity is people watching. Strangers do the strangest things, even when it’s quite clear people like me are looking.
On this particular rainy Wednesday in June, however, people watching held no appeal; in fact, if I’d had headphones or a VR headset – anything that completely blocked out everything around me – I’d have used them.
The waiting room I was sitting in was a large, open, brightly-lit space inside the Centre for Maternal-Fetal Medicine of Alberta.
And it’s not that I have concerns for their privacy, watching the strange goings-on of the pregnant women and their partners who usually fill this room – every time I’ve been here in past I spent my useless time trying not to be too obvious as I watched the weird things couples do in public, especially when one of them has a large, protruding, occasionally spontaneously moving belly. Normally that sort of thing was actually highly entertaining.
But this time, I wasn’t in the mood for entertainment. I didn’t want to be amused.
I’d been in a similar waiting room a few days before, after all, and despite all the time I spent there, I was referred to maternal-fetal medicine – MFM, as healthcare providers fondly refer to it. The words ‘fetal anomaly’ are very ugly, honestly, and no one wants to say them, least of all the general radiologist who just wanted to go home at 4:30 on a Friday afternoon. And I knew exactly how she felt – as a physician who practices obstetrics, I’ve told more than my fair share of bad news to terrified expectant parents.
And we had been terrified. This ultrasound thing, this pregnancy thing…it was not my first rodeo. In two years, I’d had two miscarriages. Each time some sort of strange problem would occur, and after an initial ultrasound showing my little live fetus, the next time I returned, there would be no heartbeat found. I’d had two D&Cs four months apart, and I was well familiar with the heartbreak of losing a child.
This was different though, in so many ways. After two miscarriages, I stopped being able to get pregnant. This time, after almost two years of trying, it had taken extreme measures to conceive – superovulation, brought on by massive doses of drugs, monitored by almost daily ultrasounds that completely messed up my office schedule, and topped off with intrauterine insemination – injecting millions of my husband’s sperm directly into my uterus to increase our chances. $5k later, I was finally, again, pregnant. But despite all the science behind our conception, the initial ultrasound was…puzzling. The fetus was five days smaller than it should have been. “Odd,” our doctor at the fertility clinic had said. “Don’t worry about it.”
Telling an expectant mother, especially a physician, not to worry about something is akin to telling her not to breath in the air all around her. I worried. But as always, with pregnancy, there was nothing I could do but wait. No pill to take, no test to do…just wait. I’m not very good at waiting.
Finally, though, I passed the twelve week mark. “Safe,” my doctor said. “One more ultrasound just for peace of mind.”
That was what brought us to the Friday afternoon, when, at just over thirteen weeks, the radiologist had to say the words ‘fetal anomaly’. Anasarca, specifically. A word I knew, a word I had no idea could be applied to an unborn baby. A word usually associated with someone dying of liver disease after a lifetime of drinking too heavily. But despite that, my fetus, at thirteen weeks, had waved at me just moments before on the monitor. A little tiny hand had waved, and a foot had kicked. The heartbeat was going strong at 160 beats per minute. I was devastated, and somehow that mental image of my baby waving in utero just made it worse. ‘Safe,’ my fertility doctor had said. ‘Safe from what?’ was what she hadn’t said.
I assumed the worst.
I called my office and cancelled my week. I found someone to cover my obstetrics shift at the hospital. I spent the weekend frantically googling anasarca, and the news wasn’t good. I completely neglected my living child, leaving her for my husband to manage for three days. I didn’t sleep. So when I finally arrived for my appointment at MFM, I wasn’t in the mindset to watch other happy, giggling, grossly pregnant women and their shenanigans. The receptionist greeted me with a bright smile and congratulations on being pregnant. I didn’t throw my health care card at her, but it was a close thing.
Despite my attempted isolation, I couldn’t help but hear when one vastly pregnant woman started shouting because she’d gotten her appointment time wrong, and she couldn’t possibly be expected to come back another day. She sobbed all over the front counter because she was miserable being pregnant, didn’t want the baby anyway. “I’ll trade,” I thought. “You take this damaged, dying baby inside me, and I’ll come back another day for an ultrasound on a happy healthy one whose appointment just got mixed up.” She finally left, shouting obscenities, and I congratulated myself on not losing my temper at her in a crowded room.
Finally we were called in for our ultrasound, and it was immediately obvious things had only gotten worse. I am not a radiologist, but the swelling was now clear even for my eyes to see, and the lack of a heartbeat was telling. “I’m having some technical difficulties,” the tech announced. “I’m going to get someone else to help me.” Sadly, I’m familiar with tech-speak. They’re not supposed to announce bad news to patients without a doctor present. I began sobbing as soon as she left the room.
When the specialized radiologist arrived, he told us what I knew: the fetus was dead. But more than that, there was a fluid collection around the baby’s heart, and in the abdomen as well. Highly suspicious for chromosomal anomalies. And given my past history of abnormal pregnancies, highly suggestive of a hereditary problem, something that could happen again, and again, and again.
I had become a walking, living, breathing coffin. In that moment, all I could think of was this dead tissue inside me, and how they had to be wrong. They just had to. But I’d known all along, I realised. I hadn’t celebrated the pregnancy, not even once. I’d known I would lose it. Confirmation bias, my scientifically inclined colleagues would say, and they wouldn’t be wrong, but it didn’t change the facts. I needed another D&C, and until then, all I felt like was a walking coffin.
“Don’t get pregnant again,” the doctor advised. “Not until you talk to genetics.”
“Not ever,” my obstetrician expanded. “Even if genetics cannot find anything wrong. This is likely to keep happening. Be happy for the daughter you have, and stop trying.”
I’m lucky, in a way, to have an obstetrician as a friend; she arranged my D&C for the next day, and my strange out-of-body coffin experience was thankfully short. But I have to admit that since then, my body hasn’t been the same. Physically, of course, that’s also true: I was bleeding, cramping, and within a few days, lactating enthusiastically, and my bladder hasn’t forgiven me yet. But metaphysically, emotionally, it’s even more so. This body that I’d had a love-hate relationship with since high school was suddenly hate-hate. It had betrayed me in every possible way. A woman’s body, biologically speaking, is designed for one thing, and mine had ceased being able to perform. My insides were toxic. Incompatible with life.
And to add insult to injury, whatever is wrong with me may be hereditary, which means my daughter, in two or three decades, may have to go through this as well. The guilt of that is overwhelming at times, though even had I known would I have done anything different? The world is a better place because she is a part of it, and I won’t wish her away. I can only hope medical science has improved by then and they’ll be able to fix her, if she has it.
Since then, my husband and I have deliberated. Should we try again anyway, and risk it happening again? Should we attempt IVF with donor sperm and eggs, spend another five to ten thousand dollars, and risk miscarrying anyway? Should we put our names on the adoption list, and hope the average five-year wait wouldn’t apply to us for some magical reason? My daughter is already five. She needed a sibling two years ago, not five years in the future. I always swore I wouldn’t have an only child, but it seems the choices left to me are worse than leaving her a singleton.
I’m still working. Every day I see pregnant women walking into my office. Some of them are lovely, sweet and caring. Some of them are abysmally unprepared, incapable of being good parents. I find myself angry at them all, regardless of my newly judgemental sense of whether they are worthy of the fetus they carry. Why do they deserve the happiness of a new life, when I don’t? A friend is due in two weeks, and I fear I will have the urge to steal her infant and flee the country when we meet.
My family keep telling me just to be happy I have a child. And I want to run screaming into the streets every time they say it. One live child does not make up for three dead ones. I love my daughter more than life, but it isn’t even fair to put those sorts of pressures on her. She is not her dead almost-siblings. I’m thankful for her every day, but it doesn’t make the pain of my loss less heart-rending.
It doesn’t help that my daughter requests a sibling. Every. Single. Day. She has make-believe sisters, she tells people at the park she’s a big sister. People ask me if I’m pregnant, because my five-year-old asserts with confidence, loudly, that she is going to have a baby. I don’t have the heart to tell her it isn’t going to happen.
And at work, the rumour of my pregnancy had gotten out – I had to change some shifts to accommodate medical appointments – but somehow the news of my miscarriage has not. I live in a small town, which means I’m not infrequently faced with smiling, happy nurses congratulating me at Walmart, and having to explain to them in a very public place, in front of my family, or theirs, that I am not, in fact, expecting anymore.
I’m not religious, was not raised to believe in God, but it turns out I must believe to some extent, to my surprise, because I keep finding myself searching my soul to determine what I’m being punished for. I can’t find anything, but I keep on looking. Or perhaps reincarnation is real, and I was a bad person in my last life. Whatever the case, I’m paying for it now, and then some.