“My daughter died at four days old. I found healing in a virtual grief group”

My daughter, Gemma, was born at the Toronto Birth Centre on May 17, 2022, at 2:10 p.m. When she came out, I noticed that she had beautiful lips and a lot of black hair. But something was wrong—she wasn’t crying like babies are supposed to when they’re born. The midwives immediately took her to a separate area and started positive pressure ventilation on her. I couldn’t see what was happening, but I could hear the midwives shuffling equipment around. I could hear the air flowing in and out of the ventilation bag. I kept waiting to hear my baby cry, but she never did.

After 15 minutes of resuscitation, Gemma was rushed to SickKids, where she was admitted to the NICU. The doctor told us that Gemma had suffered from hypoxic-ischemic encephalopathy, which occurs when the brain doesn’t receive enough oxygen or blood flow during delivery. She was placed on a cooling bed to help reduce the inflammation and swelling in her brain. The following day, we got the worst news: the damage to her brain was severe—Gemma was brain dead.

My husband and I couldn’t believe it. She looked so healthy, so strong. The doctor pointed to a computer screen showing Gemma’s electrical brain activity. In a healthy brain, the line is wavy. This line was completely straight.

We were devastated. We didn’t know how this had happened. The pregnancy had been going well. Every appointment, every scan, went perfectly. Later, we found out that I had a placental insufficiency that had gone undetected: my placenta had failed to provide enough oxygen and nutrients to the baby during delivery.

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The doctor said we could have as much time with Gemma as we wanted. We were given a private room where we read her books and played her lullabies. Family members dropped by with food and toothbrushes and extra clothes. Everybody took turns holding her. Four days later, we made the decision to remove the respiratory tubes that were keeping her alive. We said goodbye and walked out of the hospital with a lock of her hair, some moulds of her hands and feet, and a devastatingly empty car seat.

The following days were dark and full of sorrow. Instead of figuring out hunger cues and diaper rashes, we were arranging a funeral. I’d never lost a loved one before, let alone a baby I’d carried in my belly for nine months, so grief was new to me. I was not prepared for how unrelenting it was. It was hard to get out of bed, hard to shower, hard to look forward to anything other than the end of the day, when I could sleep again.

The day after Gemma died, I told my therapist everything that had happened. It felt good to have my pain acknowledged. These therapy sessions helped, but I still felt lonely in my grief. I had my husband, but I didn’t know any mothers who had lost a full-term baby. I didn’t even know anybody who knew anybody who had gone through this.

My therapist suggested that I try a virtual grief group. I hesitated at first. I had a hard enough time talking about my feelings with people I knew. Besides, we were two years into the pandemic, and the last thing I wanted to do was hop on yet another Zoom call, staring at a grid of pixellated faces as we discussed bereavement and death.

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I was miserable, though, and desperate to find people who knew the brutal pain of losing a baby. So I gave the virtual grief groups a try. My husband and I attended one we found online. We logged in at 8 p.m. on a Thursday night. There were four other boxes: a young woman, an older man and the volunteer moderator. The moderator asked everyone to light a candle for their babies, so we reached for a tealight from our bookcase and lit it. Then she asked if anybody wanted to start. We let the other people talk first. We cried as they told us about their babies. I was astounded by how steady their voices were, how they were able to deliver full sentences without stuttering. My husband and I could barely get out the words, “Our baby died.” We logged off feeling worse.

After that, my husband stuck to one-on-one therapy. I kept trying the groups. I had nothing but time since I was on maternity leave. I tried another group for parents whose children had died at any age, not just in infancy. The parents there shared stories, showed drawings their children had made or stuffed animals they had loved. My baby didn’t live long enough to draw or have favourite toys, so I didn’t have similar memories to share. I felt out of place.

I wanted to give up on grief groups altogether until my husband’s therapist told him about one held by Mount Sinai Hospital every other Monday at 1 p.m. for people who had experienced a late-pregnancy or infant loss. I was skeptical that this group would feel any different from the others, but I gave it a try.

One by one, the participants shared their babies’ names and how they had died. I couldn’t believe how heartbreaking their stories were. Like me, they had all been far along in their pregnancies and had seen no signs of anything being wrong. Their voices quavered as they spoke, and they held balled-up tissues to their eyes and noses. When it was my turn to talk, I blurted out everything. I could see some participants crying and shaking their heads as I spoke. Heart emojis began popping up at the bottom of my screen. Sitting alone in my baby’s nursery, I felt seen. I saw my sorrow reflected in people I didn’t even know. People who, like me, were still in that shock and disbelief stage of grief.

For the first time, I realized that I didn’t have to go through this alone. About six months after attending the first session, I met some of the mothers at a Fox and Fiddle bar in North York. We ordered beers, nachos and chicken fingers. We talked and cried, but we also laughed. It was the most normal I’d felt in a long time.

People say that grief comes in waves. Some days you’re ankle deep in the water, and some days you’re drowning. That couldn’t be more true for me. But my virtual grief group kept me afloat no matter how big and ruthless the waves were.

After a year and a half, I stopped attending the group. I had gone back to work and found new ways to cope, like exercising, writing and seeing friends. I got pregnant again and felt a renewed sense of hope. The waves of grief had finally become more manageable.

It’s been four years since Gemma died. Back then, I didn’t see the point in living. Now, all I want to do is live to the fullest. I want to do things that move me creatively and spend time with people who nourish me. Some days still seem unbearably hard, but then I remember how lucky I am to be alive at all. Gemma never got the chance. To honour her, I try to appreciate all the beauty in life, like the fluttering of a butterfly or the pinkness of a flower. I know she would have loved it all.