Annual event helps parents honour a child who has died
There’s no grief quite like the loss of a child. Sadly, parents Karlee and Colin Boyce know that first hand.
In 2017, when the Boyce’s daughter Sawyer was just over a year old, they learned that she had an extremely rare and untreatable genetic condition. She was the first in Canada to get the life-threatening diagnosis of DNM1 encephalopathy.
Making the most of so little time
The disease affects the DNM1 gene which impacts brain function. It causes developmental delays, physical impairments and seizures, which worsen over time.
As a patient of McMaster Children’s Hospital (MCH), Sawyer saw multiple physicians and developmental specialists at MCH’s Ron Joyce Children’s Health Centre (RJCHC) over the next few years.
“We wanted to make sure Sawyer had all the support she needed,” says Karlee. “And, we knew her life expectancy was short, so we also wanted to give her as many great life experiences as we could.”
Sawyer enjoyed participating in the RJCHC cheer squad, an inclusive cheerleading program run by RJCHC recreation therapists and adapted to everyone’s abilities. As a family, the Boyces went on multiple local day trips and they even went to Disney World.
The Boyces’ family trip to Disney World.
“Even though we knew Sawyer was going to have a short life and we did everything we could to make it a good one, nothing can prepare you for losing a child.”
When the COVID-19 pandemic hit, in-person access to Sawyer’s care team became limited. However, the Boyces didn’t skip a beat to ensure she got the same level of care. As her condition worsened, with the support of her care team, her parents set up a hospice environment in their home so Sawyer could be surrounded by family.
In November 2020, two months before her fourth birthday, Sawyer passed away.
Learning to cope with grief
“Even though we knew Sawyer was going to have a short life and we did everything we could to make it a good one, nothing can prepare you for losing a child,” says Karlee.
However, she says she can’t imagine what her grief would have been like without the support of MCH’s Quality of Life and Advanced Care (QoLACare) program, and her involvement with the hospital’s annual memorial event.
“It was such a healing experience to be with others who are going through similar grief.”
The QoLACare program provides an additional layer of support to families of children who live with life-threatening illness. QoLA staff and physicians help with things like complex pain and symptom management, advanced care planning, end-of-life care and grief support for parents and siblings.
The hospital also hosts an annual memorial service that brings together families and staff to recognize and remember children who have passed away. Parents, staff and physicians gather to share memories, poems and readings. There is also an opportunity for parents to share a photo of their child and light a candle in their memory.
Parents can share a photo of the child they lost, like this photo of Sawyer, to help honour them.
MCH invites every family who has a child die in their care to this annual event, which can be extended to additional family members.
The spring 2022 memorial was co-chaired by MCH staff members Cindy van Halderen, clinical specialist in the QoLACare program, and Karla Schwarzer, social worker in the Neonatal Intensive Care Unit.
In her role on the QoLACare team, van Halderen had been supporting the Boyce family throughout Sawyer’s care. She invited them to the memorial service to help them through the grieving process.
“I wasn’t sure it would be helpful since it was being held virtually,” says Karlee. “But I’m so glad I listened to Cindy. It was such a healing experience to be with others who are going through similar grief and to recognize as a group all the children we’ve lost.”
An event for healing
Cindy van Halderen, clinical specialist, MCH QoLACare program, and memorial service co-chair
“McMaster Children’s Hospital has been honoured to offer a memorial service to families of our patients for more than 20 years,” says van Halderen. “It gives families and staff an opportunity to reconnect and grieve together – to recognize and honour the children who are no longer with us.”
During the pandemic, the memorial shifted to a virtual format but MCH hopes to return to an in-person event, with an option for virtual attendance, in 2023.
A new element this year included a children’s craft group that was geared towards grief support for the siblings of children who had passed away. Parents identified in advance if they had a child interested in the craft and materials were sent to their home. Kate Sutherland, an MCH child life specialist, led the group through the craft creation online.
“It’s important to support the whole family, including the siblings,” says van Halderen. “The better we can support children with their grief, the better their adjustment outcomes are as they grow up.”
Even in a virtual format, the event has been meaningful to families as the pandemic led to restrictions on funerals and gatherings, as well as community grief support opportunities. In fact, attendance has been higher in the last two years with the virtual format than previous in-person memorials.
Making an impact
In 2021, Karlee read a poem as part of the event and this year she was on the planning committee. She says she found both roles very rewarding. Colin had been unable to attend last year, but made a point to attend this year because of how impactful it had been for Karlee.
Together, with the help of MCH, they have been able to work on processing their grief. The couple is now expecting a second child.
“We’ll always be thankful for the time we had with Sawyer and are looking forward to creating new memories with the addition to our family,” says Karlee.
