Earlier this month, the rise in cases of the birth defect microcephaly — linked to the Zika virus — was declared a public health emergency. I didn’t need anyone to tell me what it was. I was too familiar with something much like it.
Originally published September 2016 in Chatelaine
“Sweeeeeeeeeeet!” Jason wrote back. “Printed and fastened to cubicle wall.”
I wrapped I Love My Grandma and I Love My Grandpa books and delivered them to my parents to announce the impending arrival of their first grandchild. We had already confided our news to Jason’s sister, who was also pregnant and would be due within weeks of me. We were on the hunt for a house. I’d had a miscarriage six months before, but this time — this pregnancy — it was going to stick. My sister was crossing her fingers for a nephew, but we wanted a girl.
Five weeks later, at 17 weeks, everything changed.
This was six years ago, but lately I’ve found myself thinking about that time a lot. In December, Brazil declared a state of emergency after fears that the mosquito-borne Zika virus was related to a surge in birth defects, chiefly microcephaly — a condition in which babies have smaller-than-average heads and underdeveloped brains. Since then, the link between Zika and microcephaly has been proven, the World Health Organization has declared Zika a public health emergency, the virus has spread to over 40 countries and pregnant women are being told to avoid travelling to areas where Zika is present. (As for the women who actually live in those countries, some governments are flat-out advising them to just not get pregnant.)
But as soon as the first reports started trickling out, before anyone had heard much about microcephaly at all, I knew exactly what it was. Because I’d heard a word very similar to it before.
“Wow,” I said, gazing at the ultrasound screen. “The head is so big.” I watched as the long needle plunged into my uterus and withdrew amniotic fluid. Jason gritted his teeth as the baby arched away from the needle. After my routine blood work had come back with some mysterious results, my doctor’s office called asking if I could please come in to discuss something, right away, like, today? My doctor recommended an amniocentesis. She assured me, “It’s probably nothing.”
Jason hadn’t wanted me to have the amnio, because of the slight chance it could cause a miscarriage. He tried to talk me out of it, even in the waiting room. But I needed to know.
After a few more moments, the doctor muttered something to a nurse, who hurried out of the room. “The procedure is done,” the doctor said. “But I’m sorry to tell you — there is an abnormality.”
“But it’s probably nothing, right?” I said, brightly.
The next few minutes are blurry. Within moments, what felt like an entire medical SWAT team swooped in. The machines were all shut off.
“Can you get them a room?” the doctor said to someone. “A private room?”
We were ushered through the waiting area full of other couples, tears streaming down our faces, into a small room. The doctor — I don’t remember his name — came in with a medical textbook and started pointing at diagrams. It was the first time we heard the term hydrocephalus, which derives from the Greek words for water (hydro) and head (cephalus). It means water on the brain. But it’s not really water — it’s spinal fluid. Hydrocephalus means the fluid isn’t draining properly, making the brain and skull bulge. Our baby’s head wasn’t just big — it was seriously malformed. We were booked for a detailed ultrasound the following day. They took 15 vials of blood, some from each of us.
We drove home in shock. I took the dog to the park and sat on a bench and cried and cried and cried.
It was a girl.
I lay in my blue paper robe for a two-hour-long ultrasound. We were still clinging to hope: hope that the doctor had been wrong, or hope that he wasn’t wrong but maybe it wasn’t so bad. The doctor — a different doctor — was silent the whole time. As he was leaving, he turned to us.
“I’m sorry,” he said. The door clicked behind him.
I climbed onto Jason’s lap and laid my head on his shoulder. “She wouldn’t have much of a life,” I said.
“She wouldn’t have any life at all,” he responded sadly.
In some cases, hydrocephalus can be treated with the help of stents. And of course there are many differently abled kids who have happy lives. She wasn’t going to be one of them. “What’s the outcome if we don’t terminate the pregnancy?” I asked my latest doctor, a geneticist this time.
“It’s not good,” he said.
For her, the type and degree of hydrocephalus were so severe it was almost as if she had no brain at all. If I carried her to term and she actually survived — the chances were about 50/50 — she wouldn’t know us, she wouldn’t know the bedroom in the house we’d been searching for, she wouldn’t even know she existed. She would spend her whole, probably short life in hospitals and institutions.
I’ve always been pro-choice. Even at a very young age, the thought of a woman being forced to continue an unwanted pregnancy was horrific to me. I’d put my barely adolescent name on pro-choice organizations’ lists, only to tell them when they called asking me to attend a rally that I wasn’t allowed to go downtown by myself. But in all my years of supporting access to abortion as one of the central tenets of women’s well-being and autonomy, I’d never had one myself. And when I thought about abortion, I’d never really imagined it past the murky, faceless, cluster-of-cells early days of the first trimester. Now I was being forced to.
There has been no criminal law against abortion in Canada since 1988. While the majority of terminations happen within the first trimester, a small percentage occur during the second, many due to the discovery of serious abnormalities. In Ontario, where I live, surgical abortions are theoretically available until 24 weeks (the time limit varies between provinces). But the reality is that if you live outside of a big city, it’s unlikely you will find a facility that can perform one. The other option is having labour induced early. Even though I was at a major hospital in Toronto, my doctor told me that the enlarged head meant I was going to have to give birth and that, at barely 18 weeks, our baby wouldn’t survive the labour. We would have to wait almost a week until the hospital could fit us in.
We called our families. I could hear Jason on the phone: “The baby is broken.” I called my three closest friends, and everyone else — friends, colleagues, our real estate agent — got a cursory email. The flowers started pouring in. We went through our baby names list and picked our favourite one: Maya. I packed the small suitcase we’d received as a wedding gift. I then tried to hide my obviously pregnant self for the next week, but eventually I had to leave the house.
“What are you having?” a cheery checkout clerk asked me.
“Cute! When are you due?” she asked.
I was both desperate for it to be over and dreading it in equal measure. When the day came, we were taken to a special part of the maternity wing, far from the other labouring women and bassinets full of gurgling, healthy babies. A doctor — another doctor — smeared something on my cervix at regular intervals to kick-start my labour. My sister was there at the beginning. A friend came with a bag full of maxi-pads and breast shields for my milk. A basket of flowers arrived. They started the induction in the late morning, and by dinnertime, I was in full, excruciating labour. My IV with its precious supply of pain medication kept falling out, and my veins were so narrow that the nurses needed the anesthesiologist to put it back in. At around three in the morning, it had fallen out again. I was writhing in pain as the nurse paged anesthesiology again and again.
“Are they not coming because this isn’t a real baby?”
“We don’t think like that here,” she said gently.
They set up a cot for Jason in the room. Eventually he climbed into the narrow hospital bed with me. The sun was coming up. Then came the instruction from the nurse that I’d heard in countless TV dramas and romcoms: “Okay, Leah, it’s time to push.”
The nurse whisked our baby away. She took her to the next room, one that had a big Do Not Enter sign taped to the door. She was washing her, and dressing her, and taking photographs. I doubt every hospital does that, but this one did. Then she brought her to us to hold.
She was tiny — so tiny. She looked like a child’s doll. She was dressed in a teeny-tiny crocheted pink and white outfit, including a matching hat. She weighed about as much as a Ping-Pong ball. I still remember exactly what she felt like when the nurse placed her in my arms. “She looks like Jason,” I thought, noting how the shape of her mouth seemed to echo the one next to me that was convulsed with sobbing.
Eventually I passed her to him. “Little angel,” he said softly, stroking her cheek, then, angrily, “Her head looks fine to me.”
I lifted up the edge of her pink hat. Her head was not fine.
We held her for a while, I don’t remember how long. The nurse took her back to Do Not Enter and brought us a sturdy white envelope embellished with cursive script that said “Special Memories.” Inside there was a print of her feet, some photographs, the clothes she had been wearing and a “Certificate of Life” on a piece of white card stock with a drawing of a teddy bear in a diaper holding a balloon.
I was born: February 17, 2010 at 7:30 am
My due date: July 14, 2010
My weight: 260 grams
My length: 24 cm
I died: February 17, 2010
A few hours later, I was released. Jason deposited me in the foyer and went to get the car. I had imagined this scene many times. Usually it went something like this: Adorable pink-cheeked newborn is schlepped awkwardly into too-small, not-family-friendly red convertible, while her hapless new parents struggle (hilariously!) to get her into her car seat. Cut to a close-up of baby’s face with a (hilarious!) look that says: “Who is sending me home with these idiots?” Everyone laughs. It’s all going to be okay! The car speeds away. A tagline flashes across the bottom of the screen. It’s a commercial for hatchbacks, or cookies, or a real estate agent who sells only three-bedroom homes.
It went like this: It’s raining. Wife waits in the foyer clutching a basket of flowers that her friend sent to the hospital. Husband pulls up. Wife puts her flowers in the back seat. They drive away.
For the next few days, as soon as Jason would leave the house, I’d tear open that white envelope, look at those pictures and touch that little sweater, and cry. Like an addict, I could barely keep away. The following week, I was back at work, my breasts painfully engorged with milk for a baby who wasn’t there. I systematically hid all those arrogant pregnant-with-healthy-babies people from my social media feed. I avoided walking in my neighbourhood, which was thick with strollers overflowing with three-month-olds and pushed by full-of-themselves bitches who didn’t care how lucky they were. I despised them and their stupid comfortable boots and maternity leave leggings.
Losing Maya changed me. It changed me for always. I know people say they were transformed on “a cellular level,” and that sounds so cliché, but that’s really what it was like. It was as if her absence was chiselled into my chest. I was a different person afterwards. And so, I know, was Jason. While my friends circled with casseroles and cards and sent me long emails, his good friends — all men — did the only thing they knew how to do. They took him drinking. “They’re useless,” Jason said. “Nobody understands but us.”
I never call what happened the day we held our little baby doll in her white sweater and pink hat an abortion, but it wasn’t quite a birth, either. I don’t know what to call it. I fumble when referring to it. “The situation.” “What I went through.” “The thing that happened.” I often thought, in the months that followed, how I am so, so grateful that I live in a country and in a city where I can legally and safely and as kindly as possible go through it. I thought a lot about women who live in countries where abortion is illegal, or in areas where even if it were legal, it would not be available. What would they do?
Experts don’t know how far Zika will travel or how long it will circulate, but what they do know is that brain abnormalities often can’t be detected until the second trimester. Abortion isn’t available and even birth control is hard to come by in many of the countries where Zika is already endemic, so all that those women can do is pray. But the virus is spreading into the States, so I fear there may be more women than usual who will be facing a choice they never thought they’d have to make. I never doubted that we made the right decision, but it was by far the very worst day of both of our lives.
After we had Maya cremated, we needed somewhere to keep her ashes until, as planned, we could spread them on Jason’s mother’s grave in the spring. We also needed somewhere more permanent to put those Special Memories, so I found myself in one of those glossy shops that sell lilies and coffee table books about Christian Dior. I was kneeling by the decorative boxes—birds? Light pink? What would she like?
“Can I help you find something?” a salesgirl asked me.
“No,” I said. “You can’t.” I snatched a lavender box off the shelf. I went home and carefully placed Maya’s crocheted outfit, the cards people had sent, the photograph and her ashes in our lavender box and shut the lid. I would dream that I was carrying that box through dark, empty streets, searching for Jason, because he’d left me. I would dream that my Bubbi and my Grandma, both long dead, had been hiding Maya in my Bubbi’s kitchen. “Why are you keeping her from me?!” I’d scream at them. They never answered.
The following spring, we were in Jason’s hometown and set off on a long walk to visit his mother’s grave, where we sprinkled Maya’s ashes on the orange flowers. Jason tucked the name tag that says “Baby Maya Rumack” and the tin disc that says “Forest Lawn, 19587” into his wallet. He still has them.
We had to stop on our way back from the cemetery to get some emergency french fries because, well, I was pregnant. As the test results from those 15 vials of blood had trickled in, there was nothing indicating we were genetically predisposed to another tragedy, so we rolled the dice. Our son, Benjamin, was born the following winter. He’s now five.
Maybe one day we’ll tell him about the baby that came before him.
You had a sister. Her name was Maya. She wore a pink hat.