Rachel's Story

This week’s entry is by Rachel Samulack who created the Butterfly Run Ottawa with her spouse following the loss of their newborn son, Aaron, in 2017.

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.