'There is a light': Perinatal loss common but not in conversation

Jennifer McKnight is a mother to two babies, but only one is still with her.

She lost her son, Sebastian, while 24 weeks pregnant.

Sitting on the couch in her Regina home amid painting supplies, children's toys and two plastic tubs filled with knitted baskets, McKnight recalled the despair of last December.

She remembered how six-month-old Sebastian was cleaned and carried to her and her husband in a large wicker basket after he was delivered still. "We spent 12 hours cuddling that basket," she said.

McKnight wondered if there could be something cozier for lost infants.

"It just would have been a wonderful thing to have something that would have been just his size, that could have cradled him perfectly, that I could have left the hospital with."

Twinkle Star Project

Triggered by feelings brought on by the seemingly impersonal wicker basket she cradled her son in, McKnight searched online for something softer that could hold the bodies of lost babies.

She came up empty, so she decided to make softer versions.

But she doesn't knit or crochet. That's why she started the Twinkle Star Project.

With it, she gathers volunteer-made knitted and crocheted baskets of various sizes and colours, and delivers them to the Regina General Hospital.

"I wish we didn't have to use these, but I know that there's a need and there will be a need," she said of the "handmade mementos for babies gone too soon."

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'It's more common than people think'

Perinatal loss is the loss of a pregnancy including miscarriages, stillbirths and ectopic pregnancy or the loss of a newborn up to one month old. In Saskatchewan, a miscarriage is defined as the loss of a fetus up to 20 weeks gestation or 500 grams.

Anything beyond that criteria is considered a stillbirth.

An exact statistic on how many pregnancies end in loss doesn't exist. It's a difficult number to pin down, because early miscarriages don't always result in hospital treatment nor are they required to be registered with the provincial Ministry of Health.

Regina Qu'Appelle Health Region professionals have estimated one in four pregnancies end in loss.

Provincial data for the loss of infants aged less than eight days, miscarriages treated in hospital and stillbirths show on average 1,300 pregnancies ended in loss every year between 2010 and 2014, according to the Ministry of Health.

In the same time period, on average there were 111 stillbirths and 53 deaths in babies less than eight days of age per year.

"It's more common than people think," said Danita Lang, a registered nurse in labour and birth and the co-chair of the Regina Perinatal Loss Committee.

Her first born died at four days old. It was unexpected and, back then, supports were slim.

"The public health nurse came by six weeks later and said, 'I kind of have to get your file off my desk, so here's a book. It's called When Pregnancy fails.'"

In the past, women weren't allowed to see, touch or know the sex of their stillborn, nor did they name them, Lang said.

"They were told to go home and start concentrating on the next pregnancy. They weren't allowed to grieve that baby."

Lang's own trauma is the reason she became passionate about perinatal loss education and why she strived to change the way health-care professionals deal with perinatal loss.

"We allow these parents the time to parent, the time to spend with their babies and to do as many normals as other moms would do," Lang said

Lang said McKnight's project is one of many examples of how local people help perinatal loss services support.

That's evidenced by the fact that the Memento room at the General Hospital is filled with quilts, tissues and other care items for families suffering from a loss.

The Perinatal Outreach Education Program also provides programming in the RQHR and southern Saskatchewan.

Perinatal lossphotography

Following Sebastian's death, McKnight and her husband participated in a lesser known service: a professional maternity shoot with their baby.

"That's how I wanted to remember him: as a baby," she said. "He was beautiful and I wanted those beautiful photographs."

For her, it validated Sebastian's existence.

McKnight said the photographer "thought my baby was that important, and I knew everyone else was just going to forget about him because he never existed beyond me."

Elisha Guest, a Regina-based maternity and newborn photographer, took the photos for McKnight.

"I just treat those children like I would any child," said Guest.

"Families need to remember their babies, the smallest details, and know that they shouldn't be ashamed of anything."

You feel so so very alone, like it's only happening to you. It's almost like you don't want to come forward, telling someone you failed.- Elisha Guest, photographer

She volunteers with Now I Lay me Down to Sleep, a non-profit global organization that provides free photography in the wake of perinatal death.

"Every session is so unique," she said. "Sometimes the families have known for a really long time; other times [for] families it's very sudden and tragic."

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The volunteer service isn't always available, so nurses at the General Hospital with the perinatal program also offer to take photos and send a memory card home.

'A hidden subject'

Guest is no stranger to perinatal loss. She has vivid memories of when her mom lost her sister after six months of gestation.

She also had a miscarriage in the early stages of a pregnancy.

Talking about perinatal photography has helped Guest and her mom heal.

"There's a lot of people that have losses that don't come forward and don't talk about it. And it's such a hidden subject or a burden to hold on to that," she said.

"You feel so, so very alone, like it's only happening to you. It's almost like you don't want to come forward, telling someone you failed."

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She said the unwarranted shame felt by women will lessen if people talk about it more, and thinks people can learn from lost infants.

"Each angel baby teaches the people they meet so much," she said.

Beyond the baskets

McKnight sought several forms of support after the stillbirth, from counselling to yoga for grief to support groups. Connecting with people who have experienced something similar proved invaluable.

"When you're in the middle of a loss, it feels like you're never going to get out of it, and it helped to know that there is a light at the end of the tunnel," she said.

Through the Twinkle Star Project, McKnight connected with a seventh grade teacher, who plans to teach her school crochet club how to make the baskets.

It warmed McKnight's heart to think the next generation of parents will be educated about this type of death. "What a great thing to teach kids at a young age, to help create healthy grief boundaries," McKnight said.

Her colleague, who she had known for years, also began to make baskets.

"She opened up about her loss. She lost a son 40 years ago and he died just after a week of being born, and it was a very different time then."

I knew my son's life had to be for something, and this is my way of loving him and helping other babies and other loss moms in the process.- Jennifer McKnight

She wasn't allowed to see the infant and was discharged from the hospital.

McKnight dreams of expanding the Twinkle Star Project and the perinatal loss conversation beyond the Prairies.

Five women, each affected by their own perinatal loss, make up the board of the Twinkle Star Project, which currently has incorporated charity status.

Like those who have lost babies before her, McKnight wants to see attitudes change.

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"I knew my son's life had to be for something, and this is my way of loving him and helping other babies and other loss moms in the process."