Beyond the Stacks: Rachel Samulack & Aaron’s Butterfly Run for Roger Neilson House

October 27, 2017

Librarianship.ca is starting a new series called Beyond the Stacks about causes, charities, and movements supported by members of the Canadian librarianship community.

Our first profile is of Rachel Samulack and her work with Roger Neilson House and Aaron’s Butterfly Run.

Who are you

I have been a librarian with the Government of Canada in Ottawa for the past eight years. I’m also a mom to a busy three year old son and an outdoor enthusiast. I spend lots of time with my family hiking or cross-country skiing in the Gatineau Park.

One of the reasons that I enjoy my career as a librarian is because I get satisfaction connecting people with the resources that they need. When I decided to enter my Master of Library and Information Science (MLIS) degree over nine years ago, I had no idea that my desire to connect people with information would play such a big role in my personal life.

What charity or cause do you support

I support Roger Neilson House which is a pediatric palliative care hospice built on grounds of the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Ontario.

What they do

Roger Neilson House enriches the lives of children, youth and their families facing progressive life limiting illnesses. The palliative care team provides respite, end of life, transition to home support, symptom management, and perinatal care including a perinatal hospice and bereavement care by ensuring individualized physical, emotional, and spiritual support in a caring, compassionate environment.

One amazing program that Roger Neilson House offers is the Perinatal Hospice program. Roger Neilson House offers a nurturing and safe place for families/individuals who have received a heartbreaking fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth.

When my son Aaron was diagnosed with no kidneys at a routine 20 week ultrasound in February 2016, my husband Rob and I were told that termination was the best option and that it must be done quickly. We decided to continue our pregnancy and a friend told us about the Perinatal Hospice program at Roger Neilson House. We had access to specialized care and support including counselling and emotional support, assistance in making medical decisions about our pregnancy, delivery and Aaron’s care after birth, assistance with memory making (such as photographs) and ongoing bereavement care. Many families have found this journey to be very meaningful and healing. We spent 100 precious minutes with Aaron after birth in June 2016. It was sad and hard, but it was beautiful. Roger Neilson House also offers a Perinatal Loss Bereavement Support Group for families who have lost a pregnancy over 20 weeks or a baby shortly after birth.

Why it’s important

The Society of Obstetricians and Gynaecologists of Canada estimates that one in five pregnancies ends in miscarriage (other estimates say one in four) and approximately 7/1000 babies in Canada are born still. The Ontario-based Pregnancy and Infant Loss (PAIL) Network has done research on the needs of families experiencing pregnancy and infant loss and has found that although women are treated medically by healthcare professionals, they are not treated for the psycho-emotional aspects of this type of loss.

In the case of a terminal diagnosis during pregnancy, stillbirth or infant loss, referral by medical practitioners is more common but often in the context of a traumatic and overwhelming time-strained consultation. We weren’t told about the Perinatal Hospice program when we found out about Aaron’s diagnosis although Roger Neilson House is located next door to the hospital where we received the diagnosis. At our next appointment at the same hospital, we asked about the program and we were given a pamphlet and received a referral to Roger Neilson House. Then we slowly started to hear about other resources that exist in our community. We knew there had to be a way to let other bereaved parents know about these programs and resources.

Rob and I wanted to create a walk in October which is Pregnancy and Infant Loss Awareness Month to bring awareness to these losses and resources in Ottawa/Gatineau. We found out about The Butterfly Run Quinte which was created by three bereaved mothers in 2016 to help other bereaved families.

In 2017, The Butterfly took place in Ontario in Belleville, Peterborough, and in Ottawa. Aaron’s Butterfly Run Ottawa/Gatineau took place on Saturday, October, 14, 2017 and raised over $30,000 to support the Perinatal Hospice and Perinatal Loss Bereavement Support Group at Roger Neilson House. Over 400 people attended the event in memory of their butterfly babies.

Aaron’s Butterfly Run volunteers are also attempting to break the taboo around talking about pregnancy and infant loss by sharing our own personal stories. We 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 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. The boxes will be distributed across Ottawa at no cost to bereaved parents.

How you can help

In November 2015, Ontario MPP Mike Colle introduced Bill 141: The Pregnancy and Infant Loss Awareness, Research and Care Act in support of pregnancy and infant loss in Ontario. Bill 141 requires the Ontario Ministry of Health to undertake research and analysis on pregnancy loss and infant death that assists those, including mothers and families, who experience such loss and that informs the establishment or expansion of programs related to such loss. The Bill also officially proclaims October 15 as Pregnancy and Infant Loss Awareness Day. While this bill is a positive change for families in Ontario who experience these types of losses, it can still be hard for individuals and families to find support in their community.

Please consider supporting and sharing information pregnancy and infant loss programs in your area. We found there is a taboo about speaking about pregnancy and infant loss. It is so common, but many people feel alone in their grief. Being a bereaved parent is a path that no one should walk alone.

More information on Aaron’s Butterfly Run and Roger Neilson House can be found at www.butterflyrunottawa.ca

Other pregnancy and infant loss events and resources across Canada can be found at www.october15.ca