For many women, the excitement over a positive pregnancy test doesn’t lead to that picture perfect
moment of mom and baby cuddling and, in fact, an estimated one in four women will experience
miscarriage or pregnancy loss in her lifetime.
“Most people know someone who has lost a baby, but they never hear that story until they have a
miscarriage or a stillbirth themselves. So when it happens to you, you are completely unprepared for
the possibility,” says bereaved parent Margaret Sambol. “I felt alone and I had no idea where to even
look for resources or support.”
Enter Aaron’s Butterfly Run: a group of volunteers in Ottawa and Gatineau committed to spreading
the message, “You are not alone,” through several concrete steps.
Aaron’s Butterfly Run volunteers are attempting to break the taboo around talking about pregnancy
and infant loss by sharing their own personal stories. They have also compiled a list of miscarriage,
pregnancy and infant loss resources in Ottawa and Gatineau so that grieving parents, and their friends
and family members, can find local supports in one easy-to-find website. Aaron’s Butterfly Run is also
fundraising to support the perinatal hospice and perinatal loss programs at Roger Neilson House,
which support men and women grieving the loss of a pregnancy or infant.
“There is a stigma in talking about pregnancy loss,” says Rachel Samulack, coordinator of Aaron’s
Butterfly Run, “and bereaved parents feel they can only grieve in isolation. We want to let them and
their partners know that there is a community here who understands and wants to support them. They
don’t have to be alone to face the devastating reality of losing a pregnancy or an infant.”
Aaron’s Butterfly Run was created after Rachel and her husband Rob lost their son Aaron in 2016,
shortly after he was born. Rachel and Rob received a heartbreaking terminal diagnosis during their
pregnancy and decided to carry the pregnancy to term. The perinatal hospice program at Roger
Neilson House was a tremendous source of support to Rachel and Rob, during their pregnancy and
after the loss of Aaron.
“A friend told us about the program after Aaron’s diagnosis,” Rob explains, “We hadn’t heard about
the program at all before then. At our next appointment at the hospital, we asked about the program
and we were given a pamphlet and received a referral to Roger Neilson House. And then we slowly
started to hear about other resources. We knew there had to be a way to let other bereaved parents
know about these programs and supports.”
Aaron’s Butterfly Run is planning a 5 km run and 1 mile walk/run to raise funds for the Roger Neilson
House perinatal hospice on Saturday, Oct. 14 in Ottawa. For more information about Aaron’s Butterfly
Run, visit www.butterflyrunottawa.ca. For people who would like to get involved, but do not wish to
run, there are various volunteer opportunities available on the day of the run.
Lastly, Aaron’s Butterfly Run has partnered with Mom Friends to produce the Butterfly Box, a
resource kit containing thoughtful items and information resources to support bereaved parents in
Ottawa and Gatineau through their grief journey.
About Roger Neilson House:
Perinatal hospice includes comprehensive support from the time of diagnosis, through the birth
and death of the infant, and into the postpartum period. Roger Neilson House also offers a parent
bereavement support group for parents who have lost an infant to a stillbirth (more than 20 weeks
gestation), neonatal death up to the first 28 days of life, or medical termination or induction where a
palliative diagnosis/pregnancy existed for the infant/mother. For more information on Roger Neilson
House services, please visit http://rogerneilsonhouse.ca/our-services/.