Four months ago, the Pereira family prepared, in the usual way, to bring home a baby.
Lincoln was born three months ago, but he didn’t take a single breath. There were no kicks outside the womb, no tiny fists shaking in anger at entering a big, cold room, Lincoln was still.
Still and unmoving, gone before he left his mother; stillborn.
“I expected him to look bad, to see a reason for his passing, and I didn’t find one,” said Lincoln’s mother, Katie Pereira. “I also, in my heart, half expected him to start breathing. I heard many miracle stories like that, but this wasn’t the case for us, and it was far-fetched because he had already been gone a few days before he was born.”
Pereira was 30 weeks pregnant when she noticed the boy in her womb was quiet. It wasn’t unusual for him to hide, but she didn’t feel him move for a full day. She went to Collingwood General and Marine Hospital (CGMH) with her boyfriend, Lincoln’s father, Zack Prebble. There, stillness had a sound, a single heartbeat where there should be two – a mother’s and her baby’s.
The next day, ultrasounds confirmed Lincoln had died. But Lincoln and his family still had a journey to make.
“I knew I had to deliver, and I had to get through that,” said Pereira.
“On the day we went to the hospital I just remember a sense of anxiety and dread in the air,” said Prebble. “A consistent feeling of disbelief was something we both felt when (we) found out what would be occurring over the next few days.”
Pereira’s medical team tried, unsuccessfully, to induce her for three days. On Sept. 15, 2018, Lincoln was born via C-section.
What followed was the antithesis of birth, cruel in its parallels. Where there should be beginning, there was end. A day of memory making was spent making memorials. Immeasurable love could only pour out in grief. Up was down. The dream was a nightmare.
“It was the worst day of our life,” said Pereira’s mother and Lincoln’s grandmother, Tammy Pereira. “It is really what nightmares are made of. Nothing in life prepares you for what we went through.”
In a different time, Lincoln would have been whisked away. Today, mothers are given an option to hold their babies, but they must say hello and goodbye in the same breath.
“My heart broke all over again watching my loved ones come in and hold him,” said Pereira. “He was perfect in every way except for the fact he wasn’t breathing and that was hard to grasp.”
In the nightmare of stillbirth, time doesn’t stand still, it speeds up. The baby doesn’t grow and flourish, he fades. Mercilessly, Lincoln changed before his mother and father’s eyes.
“No one prepares you for how quickly the baby changes. It makes an already terrible situation worse,” said Pereira.
A butterfly on the door of the hospital room let others know the family was grieving the loss of their baby. Photos of babies on the wall were taken down.
Pereira and Prebble invited a few close relatives to meet their child. The medical team of doctors, nurses and midwives helped make an imprint of Lincoln’s hand. The family has five cherished photos of the newest Pereira/Prebble.
Sometimes a stillborn baby is taken to the hospital morgue in intervals so his or her body can be cooled for preservation. However, Pereira refused in order to keep Lincoln with her for as long as she could.
After two days, time ran out.
Pereira went home to recover from surgery. Her midwife, Julie Doldersum, made house calls, as midwives do. She was there to help her heal physically.
“She didn’t get to go home with her baby, Lincoln. Her needs are going to be different,” said Doldersum. “We would usually help her breastfeed. Instead, we went to Katie’s home to help her cope with breasts that were filled with milk that a baby would never drink.”
After two decades of seeing babies born, Doldersum still feels the sting of a stillbirth, and even more because she knows it’s still considered normal.
“It’s hard for midwives as well,” she said. “The birth of any baby is always a momentous occasion.”
According to Statistics Canada, there were 3,159 stillbirths in Canada in 2017. Of those, 1,469 were in Ontario. The definition of stillbirth in Canada is a baby that dies after it has reached 20 weeks gestation or 500 grams.
“Midwives are known as the guardians of normal pregnancy and childbirth,” said Doldersum. “Stillbirth is still normal. But there are higher risks to the mother.”
In Pereira’s case, Doldersum and the team at Nottawasaga Midwives worked with doctors and nurses at CGMH to make sure Pereira would receive the help she needed.
“We want to make sure the woman is cared for in a respectful way,” said Doldersum. “We want to make sure everybody recognizes that Lincoln is a baby who lived and died, and deserves as much care as any baby would.”
Pereira speaks highly of all the care she and her family received in the hospital and after Lincoln was born from her team of midwives to the nurses and Dr. Gillian Yeates at CGMH.
“Julie [Doldersum] is an amazing woman,” said Pereira. “I couldn’t have done it without her, honestly. I realized quickly that this was the hardest part of her job as well as the hospital staff’s job and they all handled it so well. They were so accommodating and supportive and even still, I am not under [Doldersum’s] care and she’s still supporting me.”
The young parents are officially part of the one-in-four club, a reference to the rate of infant fatality by miscarriage, stillbirth, or infant death.
“It’s a club that no one should be a part of,” said Pereira.
For Pereira, there are no answers to the question of why baby Lincoln died. She went through second-guessing everything that happened and every choice she made during her pregnancy - time and time again.
“We are everything-happens-for-a-reason people,” said Pereira. “We hit a roadblock with this. We couldn’t see a positive, so we had to make our own.”
She found the Cuddle Cot, a brand of cooling cot created with stillborn babies in mind. It’s a Moses basket-style bed with a refrigeration unit built into the mattress. Its function is to help preserve a stillborn child longer to give the family more time with their baby.
“I realized you need to say goodbye,” said Pereira. “You need an opportunity to bathe and dress your baby, to take pictures … to create some sort of memory that they existed. Because they did.”
Periera, her mom, her father Emanuel Pereira, and Prebble set to work nearly immediately on a campaign to raise the approximate $4,000 to $6,000 necessary to buy a Cuddle Cot, which she will donate to the CGMH. She’s almost achieved her goal, but has expanded it to keep providing Cuddle Cots to hospitals that don’t have one.
“The CuddleCot allows the family to spend every moment with their baby, precious moments where every minute counts,” she said.
Beyond that, she’s set out to make sure other families who face a stillbirth will have her support and help.
She planted a memorial tree for Lincoln, and was surprised to find out it cost $1,000. She was given the tree by a family member, but she doesn’t want other moms to face that cost. She’ll be using funds raised to help other families cover that cost or any other cost related to memorializing their child - a tattoo, the cost of a funeral licence, a photographer.
“There are some days the fundraising has been harder on me and my healing but I wouldn’t change it,” said Pereira. “It’s kept our minds busy and our hearts full.”
She’s started a Go Fund Me campaign and has also been running weekly auctions on Facebook under the page Links of Love. She’s approached many Collingwood businesses asking for donated items she can auction off for her campaign. She hasn’t been turned away.
“As we fundraise, there are stories coming out,” said Pereira. “We have met many people along the way who have been through similar circumstances who feel we have been a voice they didn’t have and that is also something we take seriously.”
But a dead baby is a taboo subject. It has the potential to isolate those suffering from a miscarriage, stillbirth or infant death because people don’t like to talk about it.
“There’s a stigma because you often don’t see it, and you don’t talk about it,” said Pereira. Tammy Pereira said she’s had strangers cry and hug her when they hear the story. She and her sister Kerri Capraro took on the job of returning shower gifts and baby items.
“We had everything we needed,” said Tammy. “Just not the baby.”
Pereira said there were so many experiences and situations she would never have thought of before going through them.
“We lived it,” said Pereira. “There were people so afraid of saying the wrong thing, but we understand there aren’t any words … People think they are going to break me, but I’m more likely to break them.”
Pereira and Prebble know there’s no way to take away the pain of stillbirth, but they are determined to do all they can for those who will have to go through the same dark tunnel they went through.
“We know how horrible the reality of it is, and know [the cooling cot] is one of the only things that can even remotely alleviate some of the pain you endure,” said Pereira. “We need families to know they aren’t alone and we just knew we had to make a difference any way we could.”
Part of that difference will be raising their voice to grow awareness of stillbirth and infant loss.
“My journey didn’t end at the hospital,” said Pereira in a Facebook post she wrote a month after delivering Lincoln. “This is an uphill battle. There are constant reminders and I will go down fighting for people to be more aware and sensitive to topics like these.”
Doldersum is inspired by the work of the Pereira and Prebble family’s work in honour of their son, and she has no doubt it will make a difference in the lives of other women and families.
“Katie [Pereira] has created quite a significant forum … she’s lending a voice to stillbirth in our community,” said Doldersum.
“What an incredible gift that Katie [Pereira] is giving our community. Unfortunately and fortunately other women will benefit from all of the hard work.”
Currently, Royal Victoria Regional Health Centre in Barrie has a cooling cot, it was donated by a family who lost their baby to stillbirth last year. In Newmarket, at Southlake Regional Health Centre, a family who lost a baby girl donated a cooling cot last September.
Orillia Soldiers’ Memorial Hospital doesn’t currently have a cooling cot available.
Soon, Collingwood General and Marine Hospital will have one, and it will be there in honour of Lincoln, a stillborn whose mother made sure his life’s legacy would ripple throughout the community.
“We are so grateful to Katie Pereira for working to turn a personal tragedy into help for other families,” said Jory Pritchard-Kerr, executive director of the Collingwood General and Marine Hospital Foundation. “The cuddle cot will only become available to South Georgian Bay families through the generosity of the community. We thank Katie for encouraging donations to this important project.”
If you would like to donate to Pereira’s campaign, visit Links of Love online here.
If you or someone you know is facing infant loss, there is help available through the Pregnancy and Infant Loss (PAIL) Network, and healthcare professionals including your midwife team, your family doctor and your obstetrician.
Pereira also urges fellow mothers to reach out to her via her Links of Love Facebook page.
“This isn’t talked about enough,” she said. “And I’ll always be an open door for anyone who needs to talk about it.”
