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A different kind of mother’s day – Pregnancy and Infant Loss

Pregnancy and Infant Loss – today, tomorrow, forever

As Mother’s Day approaches, it is important to remember the mothers who are not able to hold and care for their children.  Although the majority of pregnancies end with the birth of a healthy baby, it is estimated that one in four pregnancies1 ends in miscarriage (loss up to 20 weeks of pregnancy), and approximately 7 in every 1,000 pregnancies end in stillbirth (loss after 20 weeks of pregnancy).2

With this level of frequency, it is very likely that either you or someone close to you have experienced this traumatic event in their lives.  Other families and individuals experience the devastating loss of a newborn.  Mothers come in all forms – the ones who are able to hold their children on earth and the ones who can only hold them in their hearts.

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. The plans, dreams and hopes for the future were dashed at our dating ultrasound when we were told that our baby had no heartbeat. We were fortunate to become pregnant again and I gave birth to a healthy, happy son named Gabriel in 2014.  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 devastated, but after hearing his strong heartbeat and seeing his profile that looked so much like Gabriel, we decided to continue the pregnancy.

Lorraine Rigby-Larocque spoke at the first Babywearing in Canada conference that took place May 2015. During her session “Losing a child: Coping today, tomorrow and forever,” Lorraine shared her personal experience with loss. Lorraine’s son Kevin was stillborn at 29 weeks gestation over 20 years ago, and she also experienced eight miscarriages and survived cervical cancer.   Lorraine experienced contractions early into her pregnancy with Kevin, who was her third child, and was in and out of the hospital.  At 29 weeks, Lorraine went to the hospital because she could not feel her baby moving.  Sitting in the ultrasound room alone, Lorraine heard the dreaded words, “I’m sorry, there is no heartbeat.”  From the session, Lorraine said, “I needed to give this baby the same effort that I gave to my other babies.” So she decided to give birth to Kevin without medication as with her other babies.

Lorraine’s story of loss, though 20 years ago, is achingly familiar to anyone who has experienced pregnancy or infant loss.  The universality of loss really struck me as I listened to Lorraine’s story of loss from over 20 years ago.

When we decided to continue our pregnancy, we were referred to the Perinatal Hospice at Roger Neilson House.3  Like Lorraine, I wanted to give Aaron a similar experience that Gabriel had while I was pregnant and during his birth.  Lorraine’s words in the session are the words of a mother who knows the intertwining joy and sorrow that occurs during the birth and loss of a much-loved child.  It’s the loss of dreams for the future, when you find out that your baby has slipped away during pregnancy.  It’s a moment of such joy when you meet your baby, but also a moment of such sorrow when you know that the moment is fleeting.  It’s meeting your beautiful baby, counting their fingers and toes and trying to memorize every little detail.  The moment you meet your child is something that you never forget.

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.  He was a beautiful little boy with strawberry blonde hair and lovely lips.  One of the things that Lorraine said in her presentation about after the birth of Kevin that really stuck out to me was “My body felt empty, and my arms felt empty, I just felt empty.”  Lorraine arranged a funeral service for Kevin, as we did for Aaron.  She described having to go to a music store to pick out just the perfect music for the service only a few days after birth.  Her breasts were leaking milk; her body was empty and longing for her baby.

I remember walking around the cemetery with my dad, only two days after I gave birth to Aaron, looking for a plot in the baby section.  It was a beautiful day, the sun was shining and the birds were singing in a tree that overlooks Aaron’s final resting place.  My breasts were swollen with milk and I still looked very pregnant.  On the inside, I felt so empty.  I look back at photos from the funeral and internment and I still don’t know how I am making it through the dark days that have followed Aaron’s birth and death.

Lorraine said that one of the things that helped her most after the loss of Kevin were cards and messages from friends that acknowledged the loss of Kevin and her subsequent pregnancy losses. Sending a card on a special date like Mother’s Day to acknowledge that our babies existed is sometimes the best thing that you can do to help heal our hearts.    There are no magic words that you can say that will make the pain go away.  However, acknowledging our losses is not going to make us sadder.  We have not forgotten about our losses and we hope that our friends haven’t either.  One of our biggest fears as bereaved mothers is that our babies will be forgotten.  Though their voices do not echo in our homes, our babies will live in our hearts forever.

Just like with our family, Lorraine has keepsakes that she treasures to this day: ultrasound photos, a clipping of hair, handprints and footprints tenderly captured by a compassionate nurse.  These are the things that transcend time, things that bring us closer to our babies. These items we can hold and cherish remind us over and over again that our babies were here if only for a moment.  In the Ottawa/Gatineau area, volunteer photographers from Now I Lay Me Down to Sleep (NILMDTS) do an amazing job of capturing these moments for individuals/families facing the loss of their baby at birth.  Veronique Lalonde, the NILMDTS coordinator for Ottawa/Gatineau was contacted by the palliative care team at Roger Neilson House take photos when Aaron was born. She was so kind and compassionate and captured photos that mean the world to me.  I look at these photos often and they help me remember what Aaron looked like – his beautiful lips and his tiny feet that danced so often while I was pregnant.

It was important for Rob and to take our experience and use it to raise awareness of pregnancy and infant loss in our community when we learned out about The Butterfly Run. The Butterfly Run’s purpose is to remember our children, and for parents who experienced pregnancy and infant loss. It was created by three bereaved mothers in Quinte, Ontario, in 2016 to raise awareness and help other individuals/families who have experienced pregnancy and infant loss. The Butterfly Run is growing; it has already taken place in Belleville and Peterborough this year, and will take place in Ottawa in October.

On Saturday, 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. There will be a 1 mile family walk/run and a 5 km walk/run. All proceeds from Aaron’s Butterfly Run will go to the Perinatal Loss programs at Roger Neilson House through the Ottawa Senators Foundation.  This run is for anyone who has experienced pregnancy or infant loss and for those who support them. Thank you to the women who have come before me like Lorraine who are bringing awareness to pregnancy and infant loss.  Our babies will not be forgotten.

 

Rachel Samulack, Aaron’s Butterfly Run Ottawa/Gatineau Organizer. All proceeds from Aaron’s Butterfly Run will go to Roger Neilson’s House.

Rachel would like to thank Débora Rodrigues and Babywearing in Canada for her support and her sponsorship of Aaron’s Butterfly Run.

_________
Footnotes
1. Bill-141 was passed in the Ontario legislature to provide $1 million dollars to train health care workers in bereavement loss, and conduct research. One in four pregnancies ends in miscarriage. For more information on Bill 141, read this article.  ↩
2. This article by Maclean’s illustrates how important grieving is to the parents as attachment begins in utero. Seven out of 1,000 babies born in Canada are stillborn. Read more here.  ↩
3. Roger Neilson House is an eight-bed pediatric residential hospice which offers compassionate care and bereavement services in collaboration with the Children of Eastern Ontario’s (CHEO) palliative care team. This amazing facility is located on the grounds at CHEO and provides a home-like environment to children who have a significant risk of dying before reaching adulthood. Perinatal hospice is also offered to families or individuals whose babies are likely to die before, during, or shortly after birth. Individuals and families who receive the heartbreaking news that their baby may not survive very long after birth may choose to continue their pregnancy and celebrate their baby’s short life.  Specialized care and support at Roger Neilson House is offered that includes counselling and emotional support; assistance with making medical decisions about their pregnancy, delivery and their baby’s care; assisting with memory making (such as photographs) and ongoing bereavement care. Roger Neilson House also offers a Perinatal Loss Support group, which is for families and individuals who have lost a pregnancy over 20 weeks or a baby shortly after birth. Visit their website to learn more. ↩