sharing our truths
Laurie and Dustin’s daughter Emmie Dawn Langlois
Juliet and Chad’s son Mathias “Matty” MacLeod
Sharing one’s story is not always easy and takes a tremendous amount of courage. The Butterfly Run knows that speaking openly about our babies can help connect us with our community and make the isolating journey of grief feel less lonely. Sharing our stories can cultivate connections with others who have walked similar paths and understand the heartache that we face. Our stories can even provide hope and healing to ourselves and others that we meet along the way.
We hope that by sharing our stories with you over the past few months we have been able to provide you with opportunities for healing.
Thank you to all of our community members who have graciously shared their stories this year.
Rob and I created the Butterfly Run Ottawa in 2017 after the loss of our newborn son, Aaron. In February 2016, Aaron was diagnosed with no kidneys at a routine 20-week ultrasound. We decided to carry the pregnancy to term, and Aaron passed away in our arms 100 minutes after birth on Father’s Day, June 19th, 2016. Our family wanted to give back to the perinatal hospice program at Roger Neilson House which supported us through our pregnancy and after Aaron’s loss. We reached out to the Butterfly Run Quinte organizers to use their concept for the Butterfly Run Ottawa. The inaugural Butterfly Run Ottawa organizing committee envisioned an event where the community could come together to support those experiencing infertility, pregnancy and infant loss in our region. The Butterfly Run Ottawa in 2017 (also known as Aaron's Butterfly Run) had over 400 participants and exceeded our expectations by raising $30,000 for Roger Neilson House. We made many connections through this run and are thankful for the friendships that formed through this event. The community rallied behind us, and we were so grateful for this support.
When Rob and I shared Aaron’s story in 2017 on a CTV segment with Joel Haslam, I had someone ask me why we would want to share Aaron’s story on the news because it was so painful to hear. I responded that our children don’t have voices for themselves, so we need to be their voices. Our local media outlets have been very supportive in sharing information about the Butterfly Run Ottawa and creating awareness for infertility, pregnancy and infant loss resources in our community.
Rob and I have seen positive changes surrounding pregnancy and infant loss resources in the past eight years. When we experienced our first miscarriage in 2013, there were no early pregnancy loss programs in Ottawa. It was seen as taboo to talk about infertility, pregnancy and infant loss. We were not provided with any resources or information on what to expect when we left our ultrasound with the diagnosis of a missed miscarriage. I literally Googled, “missed miscarriage” to find out what would happen next. In 2015, an early pregnancy loss program opened at The Ottawa Hospital which helps patients receive timely medical treatment and provides emotional support.
Rob and I have also seen improvements with the referral process from health care providers to the Perinatal Hospice Program and the Perinatal Loss Bereavement Support Group at Roger Neilson House. The World Health Organization has written an article entitled “Why We Need To Talk About Losing A Baby” that provides first person experiences with pregnancy and infant loss and also provides key messages around support. I am so grateful for the run committee and community members who continue to share their stories and talk about their experiences.
Charlotte and Theo's Butterfly Run took place in October 2018 and again the community surprised us with their participation in this event. It was a huge success and the event brought together so many families and friends to celebrate the lives of their babies. After our son Matthias was born, Rob and I left the run committee in November 2018 but continued advocacy work for pregnancy and infant loss resources. Sharing our experiences and advocating for better care is something that I am very passionate about. Matthias (our second rainbow baby born after a loss) participated in the second annual Butterfly Run Ottawa as a newborn and our older son, Gabriel, has participated in every Butterfly Run Ottawa event since 2017. The 2019 event was bigger than any of us on the past organizing committees could have imagined with over 1000 participants! My heart burst with pride at the event at Lansdowne, seeing what the organizing committee had accomplished by mobilizing the community for such an important cause.
When the pandemic hit, the current Butterfly Run Ottawa committee pivoted to embrace those in our community facing infertility, pregnancy and infant loss during such a time of uncertainty. Families faced isolation, grieving the loss of their much-loved babies alone. For those experiencing infertility, treatments were delayed. Programs such as the perinatal loss support group at Roger Neilson House went online. The committee ensured that families had a safe place to share their experiences through a monthly newsletter and Facebook group. The committee used their social media platforms to continue to create community during such a time of isolation. The 4th Butterfly Run Ottawa was held virtually in October 2020 and raised $80,000 for Roger Neilson House.
As we have now completed the 5th annual Butterfly Run Ottawa, Rob and I are so proud to see Aaron’s legacy continue and I’m proud that Aaron’s brothers were able to run in memory of him. We are grateful to the executive committee of volunteers for their continued vision for the Butterfly Run Ottawa. What started out as a small seed has blossomed into an amazing annual event where we can remember our babies gone too soon.
a home away from home
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:
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 :)