A Mount Forest, Ont., family is turning the loss of their baby girl into a legacy of support for other families at the Hospital for Sick Children in Toronto.
Scottie-Lynn Stewart was born on Sept. 19 of last year. She was diagnosed in utero with truncus arteriosus type 3, a rare congenital heart defect.
“After delivery, within an hour, Scottie was transported over to SickKids where they hooked her up to everything just to get a baseline and a monitor,” mother Chelsey Briere recalled.
She underwent her first open-heart surgery at three days old and a second procedure about a week later.
Briere said the medical teams who cared for Scottie-Lynn became like family during the six weeks they spent at the hospital.
“I just can’t quantify the amount of love and support that we have felt through this, which is just so humbling that in dark days, people just come together and rally,” Briere said.
‘I had collapsed in a hallway very publicly’
But Scottie’s condition deteriorated, and the family was faced with heartbreaking end-of-life decisions.
“She flatlines and she goes limp,” Briere recalled. ”All of a sudden, there were bodies rushing in, and we’re being pulled back. There’s a nurse on top of her doing CPR, and within three minutes, she’s whisked away.”
Scottie-Lynn was placed on extracorporeal membrane oxygenation, a temporary life-support treatment, after more than 30 minutes of CPR. Her family later faced concerns about catastrophic brain damage and, eventually, learned there was nothing more that could be done medically.
“We were able to spend a couple days with her in a private room, bathing her, holding her, sleeping with her, having those moments,” Briere said.
She said that’s when she realized how much families need a private place to grieve.
“I had collapsed in a hallway very publicly,” she recalled. “All I needed was to have a safe space to collapse, to cry, to feel, to process.”
‘A life does not need to be long-lived to be meaningful’
After Scottie-Lynn died on Oct. 31, the family eventually reached out to a SickKids social worker about creating a more private space for other parents.
They started to raise money to revitalize a private room on SickKids’ Cardiac Critical Care Unit.
The room already exists, but the fundraising will help make it a more comfortable space for families who need somewhere to meet with medical staff, have difficult conversations or simply step away from the busy hospital floor.
Kelly Dickinson, manager of community partnerships at SickKids Foundation, said the project does not involve construction or a major renovation.
“There’s no construction being done,” Dickinson said. “But it’s going to have a really nice refresh ... some new furniture, uplifting details and decor, so it’s going to be a really lovely space.”
Briere said the family initially set a fundraising goal of $30,000. She said they had raised about $27,500 and expected to add more than $1,600 from a recent bottle drive and bake sale.
The fundraising page lists $24,500 as the target for the room’s revitalization. SickKids Foundation said donations above the amount needed for the room will support the hospital’s highest-priority needs, including research, medical equipment and patient and family programs.
For Briere, the fundraiser is also a way to keep Scottie-Lynn’s memory alive.
She said her family and friends continue to mark birthdays and special occasions, and they encourage others to say Scottie-Lynn’s name.
“One of the big parts as a loss parent is that people will forget,” Briere said. “For people that honour her birthday, say her name ... it feels really special to know that she wasn’t just ours.”
Her family said her short life continues to shape the way they support one another and the way they want to help other families facing loss.
“A life does not need to be long-lived to be meaningful,” the family wrote on its fundraising page.
Briere said she hopes the revitalized space will give parents a place to breathe, cry, make difficult calls and be together during some of the most painful moments of their lives.
“I just think how much she accomplished in her six weeks. I’m like, girl, you did it.”
