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

Jennifer McKnight was 24 weeks pregnant when she lost her son last December. Now, she's spearheading a project that aims to support people affected by perinatal loss, encourage healthy grieving processes, and raise awareness.

'I knew my son's life had to be for something,' says Jennifer McKnight of Regina

Jennifer McKnight's son Sebastian died when she was 24 weeks pregnant with him in December 2016. Now, she is spearheading a project that aims to support people who have experienced similar loss, create dialogue around healthy grieving processes and raise awareness. (Kendall Latimer/CBC)

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.

The handmade baskets made by the Twinkle Star Project include a stamped charm and a note. They can allow the parents to hold the baby, and can be used for cremation, burials or kept in the home. The basket pictured would have been Jennifer McKnight's son Sebastian's size. (Kendall Latimer/CBC)

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."

'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.

About 150 people have their hands on the patterns for the Twinkle Star baskets. They are crafted in different sizes, so they can be used babies lost at any point in the pregnancy. (Kendall Latimer/CBC)

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.'"

The Twinkle Star Project delivered 35 handmade baskets to the Regina General Hospital in mid-August. In September, another 45 were delivered. Jennifer McKnight hopes to deliver 200 to the hospital, before branching out to other Saskatchewan facilities. (Kirk Fraser/CBC)

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

Jennifer McKnight wants other parents to know it's OK to embrace mementos and talk about the infant they lost. She says that's part of the healing process. (Kendall Latimer/CBC )

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 loss photography

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."
Elisha Guest left her job as an accountant to pursue photography full-time. She chose maternity photography because of her inherent connections with mothers and babies. (Kendall Latimer/CBC)

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."

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.

Jennifer McKnight chose the name the Twinkle Star Project because William, her two-year-old son, would sing Twinkle, Twinkle Little Star at bedtime. That made her think of her deceased son, Sebastian, whose hand print and photo are shown in the picture. (Kendall Latimer/CBC)

'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."

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.
This photo, taken by Elisha Guest, was a way for parents to remember their lost babies while also celebrating their "rainbow baby," meaning the baby born after the mother experiences a perinatal loss. (Kendall Latimer/CBC)

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.
Each Twinkle Star Project basket includes a card that expresses apologies for the loss and explains that the cradle and charm were both handmade with the lost baby in mind. Jennifer McKnight says people need to be prepared to provide healthy support to those affected by loss, because it's bound to keep happening. (Kendall Latimer/CBC)

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.​

"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."