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Podcast: Stillbirth Happens

Through stories of lived experiences, this podcast hopes to normalize the conversation about stillbirth and give those touched by it a place to learn, grieve, and feel connected.
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Episodes


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E05: It changes you forever

In this episode, we speak with Helen, whose daughter, AnaRose, was stillborn 17 years ago. We learn about how this experience shaped the way Helen navigates the world, how it transformed who she is, and how she sees herself now. We will also hear from Anya, a registered clinical counselor, to learn how grief impacts us over time. Together, Helen and Anya share how stillbirth changes us forever.

Episode 05 transcript

 

Resources

Glossary of terms, non-medical

  • Bereavement box: a box used for storing mementos that may be personalized with the baby’s name, picture or some other design element. Bereavement boxes can provide a special place to keep memory aids. Contact your local hospital to speak with a social worker if you are interested in donating items for a bereavement box.
  • Compound grief: also known as cumulative grief; occurs when several losses pile up over one another.
  • Ambiguous loss: when a baby is stillborn, parents and family members may struggle for years to find out why the baby died, if answers even exist. . Surviving siblings may grieve a baby who died before they were born. Society may dismiss stillbirth as an invisible death, yet the grief parents and families experience after a stillbirth can be lifelong.
  • Mourning rituals: ways of honouring your child such as taking pictures, making molds of their hand and foot prints, and/or saving a lock of their hair.
  • Continued bonds: connection that extends beyond the life of a loved one. Examples of continuing bonds include using your baby’s name in stories, keeping a journal about them, wearing jewellery, or visiting places that remind you of them.
  • Self activism: the sense of empowerment that follows a loss as one seeks to change the world around them for the better. Some examples include raising awareness of, and reducing the stigma around stillbirth, advocating for improved care for the bereaved, and offering support to other bereaved parents.
  • Complicated grief: ongoing, heightened state of mourning that keeps you from healing. Symptoms may include: intense sorrow, emotional pain, and rumination over the loss of your loved one.

Quotes

Medical glossary of terms

  • Placental abruption: The placenta is a round organ that forms in the early part of pregnancy in the uterus. It supports the growth and well-being of the pregnancy in a number of ways through its connection to the developing baby through the umbilical cord.  Placental abruption occurs in 1 in 100 people when the placenta separates from the wall of the uterus too early, before the baby is born.
  • Hemorrhaging: The loss of a lot of blood in a short period of time. This can occur for various reasons during pregnancy and childbirth. Bleeding may happen internally (inside the body) or externally (outside the body).
  • Hemorrhaging from placental abruption: Placental abruption may cause hemorrhaging.
  • D&C: Dilation and curettage (D&C) is a procedure to remove tissue from inside the uterus through the cervix.
  • Low iron levels from hemorrhaging: It is common to have low iron levels after a placental abruption with hemorrhaging. When this happens you may feel weak, short of breath or lightheaded.






E04: Grief has no timeline

The grief journey has no timeline and so, for bereaved parents, the first year can be especially tough, because it's full of missed milestones: first tooth, first steps, first birthday. In this episode, we chat with Emma Hansen about how she coped after her son, Reid, was stillborn. She reflects on how she managed the first year missing Reid, and how she and her family found meaningful ways to honour him. We discuss why it’s important to let yourself ‘sit in the shit of it’ and why even when you are grieving, you are still living.


Episode 04 transcript


 

Resources

Glossary

Cervidil® (dinoprostone) – a medication delivered through the vagina to assist with labour by softening the cervix and preparing it for birth.  Cervidil and induction of  labour

 


 

E03: Asking questions, finding answers

When it comes to stillbirth, bereaved parents often have questions. Sometimes, there are no good answers. This lack of clarity can give rise to powerful emotions, including confusion, anger, and guilt. In this episode we'll hear from Courtney Hiller. Courtney and her husband Jasyn made the difficult decision to terminate their pregnancy after their son Luca was diagnosed with multiple health conditions that were incompatible with life. Luca was stillborn at 23 weeks. Courtney shares how her questions evolved over the weeks and months after Luca's stillbirth. We’ll also hear from OB/GYN Megan O’Neill, whose own son, George, was stillborn at 33 weeks. Megan provides insight into how she helps families deal with questions that arise after stillbirth, and how she supports patients through the process of stillbirth and during pregnancies that follow loss. Courtney and Megan demonstrate how to use our voices to ask questions, find answers, and seek support from community and others with lived experience of stillbirth.

Resources

Glossary

Spina bifida myelomeningocele:  Spina bifida is a birth defect that affects the spine and spinal cord. During early development, the neural tube, which eventually forms the spinal cord and brain, doesn't close properly. This leads to a gap or opening in the bones of the spine, causing a range of potential complications. When someone has spina bifida, it means that their spinal cord and the protective covering around it may not fully develop or may be exposed. The severity can vary, with some individuals experiencing minor symptoms while others may have more significant challenges. Spina bifida occulta is the most mild and common form and myelomeningocele is the most severe and rare. 


Chiari II malformation:  also known as Arnold-Chiari malformation, is a structural defect in the brain that is present at birth (congenital). It is often associated with spina bifida, specifically myelomeningocele. In Chiari II malformation, the lower part of the brain, called the cerebellum, is displaced downward through an opening at the base of the skull called the foramen magnum. This displacement causes the cerebellum and parts of the brainstem to extend into the upper spinal canal. This abnormal positioning and pressure can disrupt the flow of cerebrospinal fluid (CSF), the fluid that surrounds and cushions the brain and spinal cord. Chiari II malformation can lead to various neurological symptoms and complications. Common symptoms include headaches, neck pain, difficulty swallowing, problems with coordination and balance, muscle weakness, and sensory issues. 


Severe hydrocephalus: Build up of excess cerebrospinal (CSF) in the brain.


Folic acid and neural tube defects (like spina bifida): Folic acid is a B vitamin. If a person has enough folic acid in their body before and during pregnancy, it can help prevent major birth defects of the baby’s brain and spine. People who are pregnant need 400 micrograms (mcg) of folic acid every day. Taking folic acid before and during the 1st three months of pregnancy does not guarantee the baby will not have spina bifida, but it can significantly reduce the risk.  Research has shown that if people who could become pregnant took a multivitamin with folic acid, the risk of neural tube defects like spina bifida could be reduced by up to 70%. 




 


In this episode, we’ll hear from Erin Sowerby Greene, who learned, at 37 weeks pregnant, that her daughter Briar no longer had a heartbeat. We’ll also hear from Anne-Marie Cayer, a registered midwife with experience supporting families in both urban and rural, remote and Indigenous communities. Anne-Marie argues that every bereaved family should have access to care and support during and after a stillbirth. Erin and Anne-Marie teach us that although hospital procedures can vary from region to region, babies who are stillborn are still born, and their families deserve to be treated with dignity and respect.

Episode 02 transcript

  • Book referred to: Alan D. Wolfelt.(2001). Healing Your Grieving Heart: 100 Practical Ideas. Compassionate advice and simple activities to help you through your loss. Companion Press, CO. www.centerforloss.com
  • Nonstress test (NST) is a screening test used in pregnancy to assess the baby’s heartbeat patterns.  It can show heart rate changes when the baby moves and may show changes when the uterus contracts, such as happens during labour.
  • CuddleCots are small, portable, lightweight units that enable families experiencing the loss of their baby at any age or gestation to spend more time together. The unit is connected to a hose and mat. The baby is placed on top of the mat, which ensures that the baby remains cool. A CuddleCot was not available to Erin and Cameron after Briar was born which limited the amount of time they could spend with her. As a result of their experience, Erin and Cameron started a fundraising campaign to purchase Cuddlecots for local communities in Briar’s memory, and to give other families the gift of more time with their babies. Read more about Briar's Story - A CuddleCot Fundraiser.

Episode 02 resources


 

This episode is all about breaking the silence to recognize that stillbirth is part of the maternity journey. We speak with Jennifer Kuznetsov whose first baby, Andrey, died unexpectedly at 29 weeks gestation. Jennifer talks about the shock and disbelief she felt after learning Andrey had no heartbeat, and how she wishes she had been better prepared for such a traumatic event. We also hear from Kirsten Duckitt, a retired OB/GYN, about why there's still so much silence surrounding stillbirth. Stillbirth happens more frequently than people think.


 

Dry Creek Mountain View Cemetery Infant Graves Area: 

The dry creek landscape is a memorial garden commemorating  more than 6,000 infants interred at Mountain View Cemetery between 1914 and 1972.  This area is not available for additional interments and families may not add their own stones to commemorate babies who are not already buried there. 

Mountain View Cemetery currently provides burial spaces for babies along the hedge on the west side of the cemetery between ~34th and 36th Avenues.  These spaces are provided at no charge; however, there is a cemetery fee of $205 for the burial.  Families may order a permanent marker at an additional cost. 

 

At the end of 2023 the program will be modified to provide space for infant interment with no individual markers allowed.  Cemetery fees will still be applied.  Commemoration will be optional on a shared marker provided by the cemetery.  If families wish to have a burial space where they can provide an individual marker, sites can be purchased for $2,000 (for caskets under 24”) or for $4,000 (for caskets up to  48”).

Quote by Earl A. Grollman, "Grief is love's unwillingness to let go".

Episode 01 resources

 


Meet the hosts

Erin Bohn 2023 - cropped.jpgErin Bohn

Erin is committed to ensuring equitable access to stillbirth resources across Canada and reducing the stigma associated with stillbirth. Erin dedicates much of her free time to the stillbirth community, in part to honour her daughter Ryann who was stillborn in 2010.  She lives in rural Manitoba with her two children, Gracie and Quinn.

Jaime Ascher 2023 - cropped.jpg

Jaime Ascher

Jaime is passionate about developing resources to support bereaved parents and is driven to create tools for clinicians both in hospital and community settings to better support families through stillbirth. Jaime parents her sons: James who was stillborn in 2010 and Zachary who was stillborn in 2013  through this work. Jaime lives in British Columbia with her husband and daughter.


Hummingbird Project

The Hummingbird Project

We work to increase awareness of the impact of stillbirth on individuals, families and clinicians, to enhance the quality of information available, and to improve care. 

 

In 2017 we  set out to organize clinical support for people pregnant after stillbirth but bereaved parents quickly taught us that what was needed was support throughout their grief journey after stillbirth, not just at the time of a subsequent pregnancy.  


In 2021 we spoke with over 50 Canadian bereaved parents and 10 Canadian clinicians with experience supporting families through stillbirth about tools to support parents and clinicians after stillbirth.  


The "Stillbirth Happens - let's talk" podcast is the product of these conversations. Specific podcast episode topics were identified by people with lived experience of stillbirth, as were the episode titles, length, format, and style. ‎


The goal for this podcast is to break the silence about stillbirth and to facilitate talking about stillbirth as a part of the maternity journey. 


We hope this podcast reaches those who need it, whenever they need to hear a voice to make them feel less alone and to provide information in the dark days and hope for brighter days.  


If you have been touched by stillbirth, we built this podcast for you. 

 

 
ANN PEDERSON: Hummingbird Project Principal Investigator and  Director, Population + Global Health, BC Women's Hospital

LANA SULLIVAN: Hummingbird Project Research Manager and Co-investigator, and Project Manager, Population + Global Health, BC Women's Hospital

LEE SAXELL: Hummingbird Project Co-investigator, practicing midwife for over 30 years, and Co-director of the South Community Birth Program located in Vancouver, BC

JAIME ASCHER: Hummingbird Project Co-investigator, co-host of "Stillbirth Happens - let's talk" podcast, and bereaved parent

ERIN BOHN: Hummingbird Project Co-investigator, co-host of "Stillbirth Happens - let's talk" podcast, and bereaved parent

AJ MURRAY:  Hummingbird Project advisor, Knowledge Translation Specialist, Population + Global Health, BC Women's Hospital
 

Acknowledgements

 
Many thanks to those who supported us on this journey. We wish to particularly acknowledge:

Lynn Farrales for her vision for the research, dedication to ensuring the voices of bereaved parents were central to all activities, and keen attention to detail in analyzing the grief and loss data.  

Nicole Prestley  and the Women's Health Research Institute for their practical research assistance and overall support. 

Julia Santana Parilla and Elizabeth Borycki for their advice and support through the qualitative analysis process. 

Amanda Martin,  Alena Astashenkava and Tiana Magel for project coordination, facilitation, note taking, and reflections. 

All the podcast guests, for their courage and dedication of time to share and record their stories: 

Episode 1: Jennifer Kuznetsov and Kirsten Duckitt

Episode 2: Erin Sowerby Greene and Anne-Marie Cayer

Episode 3: Courtney McCallum and Megan O'Neill

Episode 4: Emma Hansen

Episode 5: Helen Varga and  Anya Mostrenko 

Since the start of this project, we have spoken with over 50 bereaved parents committed to sharing their experiences of stillbirth in the hope of supporting others. 

We were fortunate to interview 10 clinicians from across Canada. Each volunteered to share their experiences with us as part of their commitment to improving the quality of care given to families navigating stillbirth journeys.  

‎Jar Audio:  Thanks to Jar Audio for their belief in the power of storytelling, their focus on the listener as the heart of the podcast, their commitment to embracing creative courage, and their dedication to outstanding audio quality.

We are grateful to the Butterfly Run Vancouver, the Vancouver Foundation, and a  donor who wishes to remain anonymous for their financial support.

 
In the Hummingbird Project, bereaved parents are equal contributors to hospital-based researchers: from designing the questions, facilitating the interviews and focus groups, analyzing the data, identifying podcast guests, becoming podcast co-hosts, reviewing scripts and episode descriptions, and approving all final products of the research. This form of research highlights the value of having the lived experience of stillbirth inform all stages of the research. Contributions from all team members are given equal weight which allows for a deeper understanding of the findings.

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