October 15 2017 is the internationally recognized Pregnancy and Infant Loss (PAIL) Awareness Day. 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 five (other estimates say one in four) women will experience miscarriage or pregnancy loss in her lifetime.
Tonight is the International Wave of Light to mark Pregnancy and Infant Loss Awareness Day. At 7:00 pm in time zones around the world, people will gather to light candles to create a wave of light in honour of the butterfly babies, those who were lost during pregnancy or shortly after birth. We ask the candle be lit for an hour, to make this light burn brightly for a 24-hour period around the globe in memory of all the babies who were lost.
I have experienced loss. My story begins when my husband Rob and I decided to start a family in 2013. We experienced a miscarriage at 10 weeks with our first pregnancy. This loss made me realize that becoming a mother happened the moment I found out I was pregnant. While I was treated for the physical effects of the miscarriage, we were not provided with any support service referrals. Which had a large impact on us at the time, especially since we did not know that programs such as the PAIL Network existed. The PAIL Network is dedicated to improving bereavement care and providing support to families or individuals who have suffered the loss of a pregnancy or the death of their baby/babies.
December 2015, a private member’s bill was passed in Ontario proclaiming October 15 as Pregnancy and Infant Loss Awareness Day. This is second year it is commemorated. The bill sought to promise resources and support, as well as better research into perinatal loss and infant death. 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.
The Society of Obstetricians and Gynaecologists of Canada estimates that approximately 7/1000 babies in Canada are still born. Yet such experiences are largely misunderstood – they are rarely discussed in public and during prenatal care. A 2015 US study found that the general population believes miscarriage occurs in just 5% of all pregnancies, and that most often the cause is due to choices and actions of the mother. This misunderstanding about the prevalence and causes of pregnancy and infant loss generate and create a strong taboo, leaving families and individuals to experience their grief largely in isolation. In the case of a fatal diagnosis during pregnancy, stillbirth and infant loss, referral by medical practitioners is more common but often in the context of a traumatic and overwhelming time-strained consultation. Parents are not always provided with the time to process their grief.
In 2016, we decided to add again to our family. We passed the 12 week mark and I breathed a sigh of relief. 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 told that termination was the best option and that it must be done quickly. We were devastated, but after hearing his strong heartbeat and seeing his profile that looked so much like Gabriel, our son from our second birth, we decided to continue the pregnancy.
We were only referred to the Perinatal hospice program at Roger Neilson House after making this decision. The Perinatal hospice program at Roger Neilson House is a nurturing and safe place for families and individuals who have received a heartbreaking fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth. These parents have access to specialized care and support at Roger Neilson House. Support includes counselling, and emotional support to help parents make medical decisions about the pregnancy, delivery and the baby’s care, assisting with memory making (such as photographs) and ongoing bereavement care. We spent 100 precious minutes with Aaron after birth in June 2016. It was sad and hard, but it was beautiful. You can read our full story here. Roger Neilson House also offers a Perinatal Loss Bereavement Support Group. This group is available for parents who have lost a pregnancy beyond 20 weeks gestation, or an infant aged up to 28 days.
Many families have found this journey and the support offered through the Perinatal Hospice program to be very meaningful and healing.
Aaron’s Butterfly Run Ottawa/Gatineau was held yesterday in Ottawa to raise awareness for pregnancy and infant loss, and this wasn’t just any old kind of run. Aaron’s Butterfly Run is aiming to provide support and share resources in our community with those who experience pregnancy and infant loss. At Aaron’s Butterfly Run, we are doing everything we can to share our personal experiences and communicate with others about the pregnancy and infant loss resources that already exist in our community.
Through a grant from Just Change Ottawa, we are partnering with Mom Friends to create the Butterfly Box. This box will be a resource that is available at no cost for parents who have experienced pregnancy or infant loss in Ottawa/Gatineau.
If you are grieving because you have experienced a miscarriage, stillbirth or infant loss, please know that I am thinking of you tonight as I light a candle in memory of my two butterfly babies. Please join us during the International Wave of Light today at 7:00 pm to light a candle in memory of all the butterfly babies. Leave the candle burning for at least an hour and create a ‘wave’ of light spanning the globe in honour of babies who were lost during pregnancy or shortly after birth.