'Nobody wants to think about it': Opening the conversation after the death of a baby

The doctor's words shattered the perfect picture of motherhood Lori Nieto had imagined. 

"There's no heartbeat."

Nieto was 36.5 weeks pregnant when she woke up and something felt off, like she was alone. She expressed her concerns to her family members, but they reassured her and assumed she was overly concerned because Nieto is a nurse. 

She brushed off her instincts and carried on, but the feeling of unease persisted into the evening. She chugged a two-litre bottle of soda, something that had always got the baby kicking. 

"He was just would just go bing, bing, bing, bing, very active, with any sort of pop," she said.

She knew he also didn't like when she would lie on her left side. He would often kick her until she rolled to the right. She laid like that for almost an hour, with a belly full of soda. Nothing happened.

That night, hospital staff confirmed there was no heartbeat.

"I remember glancing over at the ultrasound screen and just seeing his little hand floating," she said.

Grieving moms can lean on each other

She delivered the baby, Nicholas, the next day at noon. 

"It was the only mom thing that I was ever going to be able to do for him," she said, adding she couldn't look any longer. 

"Everything else that you always envisioned as a mum was wiped out."

Nieto said he emerged with his lengthy umbilical cord wrapped around his tiny body. 

She opted for no epidural or medication. She wanted to feel it all, but she also wanted to punish herself because she felt like she should have known better.

Twenty years later, she still grapples with the sense of loss. 

Sunday marks International Bereaved Mother's Day, in recognition of mothers grieving the loss of a child. Nieto said the loss is especially complex if the child died within the womb, because "you're not a mom, but you're not not a mom."

She had given birth, but without a baby felt like she didn't count. This day of recognition makes her experience feel less lonely and validates her experience as a mom, she said.

Now, she's preparing to attend a Saskatchewan retreat in June for people who have experienced perinatal loss, which includes miscarriages, stillbirths, ectopic pregnancy or the loss of a newborn up to one month old. Similar retreats are held in other parts of Canada and the U.S.

Nieto struggled with postpartum depression and suicidal inclinations after losing her baby. She said perinatal loss can be a lonely, isolating experience.

That's why talking openly can help people who will undoubtedly experience it in the future, she said. 

"Nobody wants to be part of this club, but if they're going to end up being in the club it should be a supportive one."

Stigma around perinatal loss persists

Nieto has been dealing with her loss for two decades. She said there is a desperate need for targeted support for families who have experienced perinatal loss.

It's still a topic discussed behind closed doors, she said, despite it affecting so many people.

"It's the most horrific thing a mother can envision. Nobody wants to think about it," Nieto said.

Kathy Simard, 34, said it's tiresome when people respond to stories about her lost daughter with ashen faces and glassy eyes.

"They just need to flee the scene when you're talking about a dead baby," Simard said.

"To get rid of that stigma would be huge."

She said people need to stop assuming she needs a hug when she really needs acknowledgement.

Provincial data shows that for the years 2010 to 2014, on average, 1,300 babies were miscarried, stillborn or died less than eight days after birth, according to the  Saskatchewan Ministry of Health. The Ministry could not provide more recent statistics and said Vital Statistics did not have a timeline for when new numbers would be readily available.

The Canadian Pediatric Society says perinatal loss "is one of the most profound losses a person can experience."

'Devastating' 

Last August, Simard delivered her daughter Izabelle stillborn at 31 weeks and six days.

"The love you feel for your children is something that you can't really experience until you have one and then to have it ripped away from you, it's just devastating," she said.

She and her husband were told early on they might lose the baby.

"Instead of having a left lung and a right lung, she had two left lungs and two left sides of her heart and her insides were all backwards," she said. "It's almost like I was completely betrayed by my body."

A photographer captured Simard's fleeting moments with Izabelle after the delivery. Simard peeled back the blankets that cradled Izabelle to take it all in.

"I needed to look at every single tiny little imperfection in her skin," Simard said.

"Those moments meant the world to me. I'll never have them again, that's the only time I've ever got to hold my daughter."

She found support through the hospital's bereavement co-ordinator Marlene Jackson, her friends, her family and the bearing loss support group. For her, the group is a bittersweet reprieve. 

"You're thankful that there's other people going through it, but you're sad that there's other people going through it," she said. 

She said these connections have been huge in the healing and grieving processes. 

Perinatal loss bereavement retreat

Simard is planning to attend the Saskatchewan Perinatal Bereavement Retreat next month. The two-day event is organized by the Twinkle Star Project, an organization created to help people access supportive services, and resources for families grieving perinatal loss.

It's best known for its basket project, though which volunteers knit tiny, delicate baskets so families can cradle their babies in hospital after a loss.

It has distributed more than 1,000 baskets in Saskatchewan, Alberta and Manitoba, and most recently has added an extra-small basket, for first-trimester miscarriages. 

Simard said connections formed with others who have experienced similar losses have been huge in the healing processes.

That's, in part, why she's looking forward to a retreat where nothing needs to be hidden and nothing she says might come as a surprise.

"This is just a chance to be open and free," she said.

She's also keen to meet more people who might be further along in their grieving process. 

"That gives me hope, that I'm eventually going to be how they are, which is more accepting, more open, more able to kind of see clearly," she said. "Right now I'm still in my fog of grief."

Nieto said thoughts of her son have remained top of mind, even as she's raised her two other boys. She still says goodnight to Nicholas, met only by empty air. 

The anticipation of the bereavement retreat is stirring up feelings of vulnerability. 

"I've lived with this intensely broken heart for so long that part of me is very scared to lose it because then what am I without it?" she said.

Nieto is hopeful the retreat will allow her the time to work through the loss and honour Nicholas. She said the grief has never gotten better, but it's gotten easier. 

"This being on my shoulders, it's so heavy it's so hard. I don't want any other mom to have to carry theirs around for 20 years."

The Perinatal Loss Bereavement Retreat is happening June 1 and 2 at Arlington Beach, Sask.