a home away from home

Throughout the month of October, we'll be hearing from various community members about how the Butterfly Run has impacted them. The first is from Carol Openshaw, MSW RSW, a palliative care paediatric social worker at Roger Neilson House.

​When I first began working at RNH ten years ago, I was told “we are a home away from home”. When I think of home, just some of the words that come to my mind are:

• Love and comfort
• Acceptance and nurturing
• Fostering innovation and growth in those we love
• community and encouragement

Sure, sure… but this is just a job right? How can a workplace be like home? Well, as I reflect on those ten years, those words have resonated especially throughout the past seven of which I have spent developing and growing the perinatal hospice and bereavement program alongside my teammates, most notably Lesley Sabourin, Perinatal Hospice Coordinator.

Since opening, RNH has always offered bereavement support for families experiencing perinatal loss- but the only way families found out about our program is if they happened to cross our paths, and generally if their baby was born alive and then died. These parents attended the same parent group and counselling program as families who had lost 18 year olds. Inevitably I would hear from our perinatal families “I didn’t know my baby that long- I don’t feel like I should be here- after all, those families are grieving a lifetime of memories” (interestingly, the families of older children would say to me “I can’t imagine the pain these families feel after losing a baby-thank god I had 18 years!”).

I believed we could do better by our perinatal community, so I approached my director Megan
Wright. I asked- can I please do some research in this area and create a perinatal loss support
group? We can try it out and see how it goes? My request was met with a resounding “YES! What do you need from us?” because families foster innovation and growth, and RNH is a home away from home.
I was afforded dedicated time to research the needs of parents who had lost babies, created a program model, and ran two back to back trial groups….and the rest is history. Since its inception, there has only been one season early on where a group was not run due to lack of parents. A season is 3 months. In 7 years, only one season had no group. In 7 years, we have in some months run concurrent groups due to high demand. And counselling, counselling, counselling!

Early in this journey I met Julia. Julia was my first parent who had lost a full term baby in stillbirth and reached out herself for support- she happened to hear about RNH from a friend who worked at CHEO and knew we were trying to grow this area. But stillbirth? This was new for me. I connected with my management- “Can I include the stillbirth population on my caseload? My research shows these parents need support and are experiencing significant grief”… the answer? “Of course! Let us know what you need!” …because families honour community, and RNH is a home away from home.

Julia shared with me the devastating story of losing her first son Carter at 38 weeks- imagine
reaching the finish line and then having your world collapse, after you did everything right.
Julia left the hospital with a suicide prevention pamphlet and the message that a “social worker
will call you”. Julia and I spent months establishing her new role as a mom doing the hardest parenting job of them all-parenting her baby in grief.

Then Julia discovered the Butterfly Run- in her words, “I found my people”. She became determined that no parent should ever live her experience of a pamphlet in hand, and that all families who need community should have access to it.

What has the Butterfly run accomplished? Crucial funding to continue to allow RNH to grow and develop our perinatal program. My role is now almost entirely dedicated to perinatal bereavement, to ensure I have the bandwidth to take on as many families that I can. We have expanded our program to include the families who have lost a baby through medical termination/early induction following a palliative diagnosis.
We have for three years been facilitating a Pregnancy After Loss Support group, to ensure that families are well supported in the next journey in their lives- because families provide comfort and nurturing… and RNH is a home away from home.

Thank you Butterfly Run for an incredible 5 years. I have attended every run, and am the proud
captain for the second year in a row of the RNH East Enders team! Because families are all about
encouragement, and RNH is a home away from home :)