Categories: Articles and Issue 35 - Spring 2017.
author: rachelsamulack.

Pregnancy and Infant Loss:

Remembering the Butterfly Babies

Pregnancy is supposed to be a time of excitement and anticipation of the future. Unfortunately, pregnancy and infant loss (also known as perinatal loss) affects 1 in 4 women and their partners and families. Perinatal loss is defined as the death of an infant during pregnancy or soon thereafter. These deaths include miscarriage, stillbirth, neonatal death, as well as medical or elective termination. These losses are devastating and it can be hard for others to understand the magnitude of grief that accompanies these losses. Bill 141: Pregnancy and Infant Loss Awareness, Research and Care Act, 2015 was passed in Ontario to help families and individuals who have experienced this type of loss. This bill is helping to end the stigma and silence surrounding pregnancy and infant loss.

My husband and I know all too well the pain of pregnancy and infant loss. We experienced a miscarriage at 10 weeks with our first pregnancy. We didn’t find out about how common miscarriage was until after our loss. We were fortunate to become pregnant again and I gave birth to a healthy, happy son in 2014. In 2016, we decided to add to our family. After a routine ultrasound at 19 weeks, we found out that our son Aaron had no kidneys and that there was no chance that he would survive after birth. We were devastated, but after hearing his strong heartbeat and seeing his profile that looked so much like our older son, we decided to continue the pregnancy.

We met with a palliative care doctor, nurse and social worker at Roger Neilson House who provide support through their Perinatal Hospice to families whose babies are likely to die before, during, or shortly after birth. Perinatal Hospice includes comprehensive support from the time of diagnosis, through the birth and death of the infant, and into the postpartum period. The team at Roger Neilson House helped us create a specialized birth plan, gave us memory making ideas and ongoing bereavement support. Roger Neilson House also offers a Perinatal Loss Support group for families who have lost a pregnancy over 20 weeks or a baby shortly after birth. Our son, Aaron Isaiah Robert Peters Samulack was born four weeks early on Father’s Day, June 19th 2016. We spent 100 precious minutes with Aaron. It was sad and it was hard, but it was beautiful.

The Butterfly Run Quinte was created by three bereaved mothers in 2016 to help other bereaved families. In 2017, The Butterfly Run will take place in Belleville, Peterborough and Ottawa/Gatineau. On October 14th 2017, we will be walking or running to raise awareness for all types of pregnancy and infant loss at Aaron’s Butterfly Run Ottawa/Gatineau. All proceeds from Aaron’s Butterfly Run will go to Roger Neilson House. On April 28th, 2017, we will be holding a Pregnancy and Infant Loss film night and panel discussion plus an online Silent Auction to raise funds to cover the overhead costs of the run. Being a bereaved parent is a path that no one should walk alone. Aaron’s Butterfly Run Ottawa/Gatineau will be a celebration of each life, no matter how long or short. This year, let’s remember all of the butterfly babies gone too soon.

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Rachel Samulack
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