When my son was stillborn from an umbilical cord accident in January of last year, I originally thought I would “only” be dealing with the grief of losing a child. That would be plenty to work with right there. But very quickly I felt the stigma of being mother to a child who never had the chance to take one breath. People are not comfortable with it, friends don’t know what to say, family are left struggling to understand the senseless. I understand all of these reactions because I myself was confused about how I could be his mother when he was first born. Sixteen months later, I continue to try to figure it out. Normally when someone dies, we grieve their loss and remember their impact on our lives. Because our son was stillborn, in many people’s eyes, it’s like he never lived. And with that, his life and the pain of losing him goes unacknowledged, which can add to the burden of grief.
Every year, 2.6 million babies around the world are stillborn. In Canada, the rate is around 6 stillbirths for every 1000 live birth (in BC, the rate is 10 in a 1000). For comparison, the rate of SIDS is 0.3 per 1000, a rate which decreased dramatically from 10 years prior due in part to research and sustained education campaigns such as “Back To Sleep”. The World Health Organization says stillbirths are “largely invisible as a social and public health issue”. In the last little while, organizations have started to acknowledge the far-reaching impact of stillbirth and are putting it on their agendas. People are fond of telling parents of stillborn babies that “everything happens for a reason” but actually, the reason the stillbirth rate, unlike the SIDS rate, has remained unchanged, is that until now, there has not been a firm commitment by governments and organizations to eliminate preventable deaths of babies during pregnancy.
It’s an interesting time in the world of stillbirth, from both the the clinician/researcher and parents perspectives. The Lancet, one of the world’s most respected medical journals, published a series on stillbirth which is a global call to action to reduce stillbirth rates and eliminate preventable deaths (http://www.thelancet.com/series/stillbirth). There are currently two films about stillbirths being made – a fictionalized Hollywood version called Return To Zero (http://www.returntozerothemovie.com/) and STILL Project (http://stillproject.org/), a documentary. The directors of both films are parents of stillborn babies and they are working together to break the silence and help families tell their stories. Across Canada, bereaved parents have been working hard to make meaning from their loss by starting their own support groups and finding ways to reach out to other families. Peter & I have joined two other families here in Vancouver to start Still Life Canada (http://still-lifecanada.ca/), a non-profit dedicated to education, research & support to raise awareness about stillbirth and support research to reduce both the stillbirth rate and its devastating impact on families. This summer, our conference, You Are Not Alone: Bringing Stillbirth Out of the Shadows, aims to bring healthcare professionals and parents together to make a difference for bereaved families and the people who care for them.
You can be part of this global wave by getting informed and supporting organizations dedicated to helping families of stillborn babies and to conducting research to eliminate preventable deaths. If you are on social media, share any information you think might help, even if it makes you a little uncomfortable. As we are told in support group, “lean into the discomfort”! A challenge for sure. Help reduce the stigma by speaking babies’ names and talking to parents about their loved ones. One of the hardest things for us has been when Toren’s life, and the way he died, are treated like shameful secrets. He is our beloved family member whose life was cut too short. We love him, we miss him and we are proud of him, just as we are proud of his big sister who was three and a half when he was born. We are learning a lot about sibling grief from her. It’s hard to explain what it’s like being the parent of a stillborn child. The work that we are doing is part of parenting him, loving him and grieving him. It’s not easy. The biggest thing that has helped has been community.
Andrea Regimbal, Toren’s Mom & author of her blog On Stillness