Love & Loss

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"I Needed To Be With People Who Got It:" On Grieving A Baby When The World Has Shut Down

“They were my people ... My family and friends tried their best, but they didn’t get it.”

There are smiles and warm greetings as parents log on. One dad cracks a joke about grabbing a drink for anyone that wants one. The couples that know each other from previous sessions exchange compliments over new haircuts and tease someone about how long his beard is getting. A white dog jumps up to join one couple on the couch; a tabby cat wanders across the back of a couch in another home. One mother sits outside, her back against the wooden siding of her house, the sun giving her face a warm glow. Her husband will join later when he gets home from work. There are a few solo moms, and at least one of them is brand new to the group. The facilitator, Denise Paul, welcomes each person like they are all old friends.

A full 10 minutes go by before the conversation turns, and the participants start sharing their stories of losing a baby.

In March of 2020, entire workforces moved their meetings online — and so too did the UNITE Neonatal Loss Support group, usually held at Holy Redeemer Hospital in Meadowbrook, Pennsylvania. “The pandemic hasn’t had any impact on the number of people that are reaching out or attending,” Paul says. Because even when the world’s attention is focused on a virus, people are still grieving for an entirely different kind of loss — and they need a place to do that collectively.

The parents that attend the group lost their babies either before birth or shortly after. Some experienced miscarriages; others held their newborns for a few minutes before they died. But most, like attendees Hali Bernstein and her husband Matthew, who tonight sit beneath a vivid cityscape painting, experienced a stillbirth.

* * *

For over 33 weeks, Hali enjoyed a relatively uneventful pregnancy. But in February of 2019, as she stood in her kitchen having a snack, it struck her that she hadn’t felt the daughter she’d named Maya kick that day. When one day turned into a couple, worry set in, especially when her doctor’s suggestion to drink some orange juice, lay down, and count kicks didn’t change anything.

“I felt absolutely nothing,” Hali remembers, so she and Matthew hurried to the emergency room. There, they were sent straight to labor and delivery, where doctors checked for a heartbeat. “I think we might have gone through three people until the final OB-GYN resident said to us, ‘I’m sorry, I’m not seeing what I should be seeing,’” Hali says. At first, their words didn’t make sense to Hali. “I remember hearing a heartbeat… but it was mine, not the baby’s.”

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“I was in shock. I just remember saying over and over, ‘Tell me this isn’t happening.’”

The hospital gave the couple some time to call their families and process the news. Then, Hali was induced in a room down the hall, far from other laboring mothers so she wouldn’t hear any newborn cries.

Labor lasted 30 hours. Doctors gave Hali a sedative to calm her — which they only could do, she says, “because my child was dead.”

At 4:31 in the morning on March 1, Hali delivered her stillborn daughter. She was 5 pounds, 1 ounce.

* * *

Every year in the United States alone, about 24,000 babies are stillborn — meaning the fetus dies sometime after the 20th week in utero, either before or during delivery. That’s roughly 1 in 160 births. About 10 to 15 of every 100 pregnancies end in miscarriage. Yet despite the prevalence of pregnancy loss, many grieving parents feel like their loss is dismissed, minimized.

“We live with so much pain and silence around reproductive loss,” explains Sarah Price, Ph.D., a professor at Virginia Commonwealth University’s School of Social Work whose research focuses on grief and loss related to pregnancy and childbearing. In part, she explains, this is due to the persistent myth that grieving a miscarriage or stillbirth is a “lesser grief,” but that couldn’t be further from the truth. “We encourage people to invest deeply in a pregnancy — physically, mentally, and emotionally,” she says, so after all that investment, the loss that comes with it is felt very deeply.

In fact, says Lindsey Henke, LICSW, a motherhood therapist and founder of the Pregnancy After Loss Support nonprofit organization, research suggests that losing a child at any point during pregnancy or after birth can have the same intensity of grief as other traumatic events.

“Friends and family of those grieving a neonatal loss don’t always understand how impactful losing a baby during pregnancy is,” explains Henke, whose first pregnancy ended in stillbirth. “They don’t always acknowledge or legitimize their loved one’s pain, which is why this is often referred to as ‘disenfranchised grief.’”

Society reinforces this belief. Think: the unspoken rule of waiting to announce a pregnancy until after the 12th or 13th week. “This harms and prolongs the grieving process of expectant parents if they experience loss early in the pregnancy,” says Henke.

The grief of neonatal loss also comes from a slightly different place than other kinds of losses. “If you think about the funeral rituals that are a part of our family and culture, they often focus on the past, on shared memory: reliving the experiences that one had with a loved one,” Price explains. “Miscarriage and stillbirth are different because the loss is felt in the future: our hopes, expectations, and imaginations of what will be. Yet, those are just as real and powerful, and they are suddenly ended when a miscarriage or stillbirth occurs.”

“Parents may get only a short time, or no time at all, with the physical child they have been preparing for and expecting to welcome into their lives,” she adds.

Hali and Matthew spent about five to six hours with their daughter’s body after she was born, trying to, as she says, “squish” as many memories in as they could before they said goodbye for good. “The [hospital staff] dressed her, and they tried to make her look as good as she could, but you know… she was a dead baby,” says Hali. “I’m not going to sugarcoat it or try to pretend she looked any other way.”

The grieving parents couldn’t stop holding her, though, as they tried to soak in those moments they needed with her.

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“We read to her, and we sang to her,” Hali says. Matthew played a song and danced his “daddy-daughter dance.” Their parents held their grandchild, and they enlisted the on-staff photographer to take some photos. “The [nurses] never rushed us,” Hali remembers, “but eventually, I remember I said we’re only putting off the inevitable. She can’t stay with us. We have to say goodbye.”

Until they left the hospital, “Time kind of stood still,” Matthew says. “It was a blur.”

* * *

The grief that comes with neonatal loss is often complicated by stigma, shame, and guilt. “Miscarriage and stillbirth can occur for many reasons that are unknown, having nothing to do with the health of the person who is pregnant,” says Price. “Still a miscarriage or stillbirth can feel stigmatizing and shameful [because] people blame their bodies or worry that they did something ‘wrong.’”

This guilt can be intense, especially if medical professionals don’t understand what happened to cause the loss. Hali and Matthew declined an autopsy, but the doctors ran blood tests on Hali and checked the placenta and umbilical cord. Nothing gave them an answer. Hali says the maternal-fetal medicine doctor they saw admitted he could only speculate.

“He said to us, ‘If I had to give you a diagnosis, I would diagnose you as being incredibly unlucky.” Still, Hali says, she went through a period of feeling guilty and questioning herself and her actions.

It’s not hard to hear the echoes of this same guilt in the Zoom support group. Over the two hours that the group takes place, medical words like "cervical insufficiency" and "placenta abruption" are repeated as the parents share their stories. These were all medical terms that the parents had never heard before experiencing their loss, but that now carry tremendous weight. By their very names, the definitions seem to assign blame to the mothers’ bodies, making them even more painful to say aloud.

* * *

Support groups like this one are important to parents who experience this specific kind of loss because they create spaces where, for the first time, the people they’re talking to know exactly what they’re going through. This remains true whether a group is held in person or virtually, in the middle of a pandemic.

“[They] help us by reminding us that we are not alone,” says Price. “There are others who are grieving and those who are there to support that grief. These groups exist to break the silence and normalize the experience.” By normalizing it, the groups can also soften the pain of loss with time. One small 2016 study, for example, found that bereaved individuals reported “comfort” or other positive mental health effects when responding to questionnaires about their experiences in bereavement support groups.

Hali and Matthew found out about the UNITE group from the hospital, and they weren’t even home a week before they felt drawn to be a part of it. “I felt like I needed to be surrounded by — or needed to meet — other women who had also had a baby that died.”

In fact, Hali and Matthew, for a while, attended three different groups. “We were going to something every week,” Hali says. “They were my people, and I needed to be with people who got it. My family and friends tried their best, but they didn’t get it.”

Eventually, the couple pared it back to just the one, but they needed that weekly meeting for a long time. The group also helped them bridge their differences in how they grieved.

“I was always surrounded by friends and family,” Matthew says. “I needed my family and couldn’t be alone. But Hali, on the other hand, did not want to be around any of our friends and family.”

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Matthew also needed to feel active in his grief — that first week after being home, he scrubbed every floorboard in his house — while Hali wanted to talk about her feelings. So the group became their way to do something together in this painful time. And once the pandemic forced shutdowns and the group went online, Hali and Matthew kept attending. Some of the closeness, Matthew says, is lost when you go virtual, but he says, “Given the circumstances, I think it’s amazing what we’re achieving, and I don’t think the actual support is lost virtually.”

Both seemed to agree that in terms of what the pandemic had taken from all of us, they were glad that there was something it couldn’t take.

* * *

“Some of these resources existed online long before the pandemic,” says Price, with some of the earliest online groups popping up in the mid-’90s. And, of course, as social media platforms have arisen, they have each in turn quickly become a source of connection. “Because we don’t talk about pregnancy loss freely, we don’t know that our neighbor or coworker has experienced this kind of loss as well,” says Henke, “So it’s often in online communities through Facebook, Instagram, TikTok, and Twitter where those who have experienced pregnancy loss find their community.”

In fact, Price says, online support is sometimes more effective at reaching parents who live in rural areas, or who feel like they aren’t getting any — or the right kind of — support from the people they’re close to in real life. “Sometimes, reaching out for support online may help a grieving parent find the words, the confidence, and the support to talk more openly with their family and friends,” she explains.

A virtual option also allows some parents to keep attending groups when they get pregnant again without worrying about hurting their fellow bereaved parents. When Hali and Matthew found themselves expecting again, they kept attending the support group their entire pregnancy. The screen allowed them to decide when and if they wanted to share their news.

They did take a short break from the group once their second daughter was born. “It’s hard to hide her — and her cries — at a baby loss group, and we wouldn’t want to upset anyone, especially those early in their grief,” Hali explained. But they went back as soon as their daughter was on a more regular sleep schedule.

“I missed it every month,” Hali says, adding that parenting a living child didn’t remove her need to talk about Maya and her loss. Having a living child, she says, doesn’t mean she’s “fixed” or that she doesn’t still grieve.

Matthew feels the same: the support group became his way to process his grief and honor his daughter every month. In fact, since May of 2021, he’s been facilitating a dad-only group that is entirely virtual — and will remain so even after the pandemic wanes because it allows fathers from all over to attend, even if they don’t live near each other.

“It’s a way for me to give back and help other dads,” he says. “There were people in our group that were instrumental in helping us, so it’s a way to carry that forward. It’s also a great way for me to keep Maya’s story alive.”