On Jan. 7, 2021, Healthy Debate published an opinion piece titled Stillbirth in Canada: A Call to Action written by one of the authors of this article. In it, Nadine describes the stillbirth of her daughter, Judith, bringing to light the devastating long-term impacts that stillbirths have on families’ lives. Nadine also initiated a call to action. Thanks in part to readers like you, 726 signatures were gathered for a petition that was presented in the House of Commons on Feb. 23, 2021.
Though encouraging, the response received from the Government of Canada was not sufficient for the Public Health Agency of Canada (PHAC) to act on recommendations in the petition. More pressure needs to be put on the government.
That is why on March 31, we, along with Mary Margaret Murphy (executive director, Baby’s Breath Canada), launched the Canadian Collaborative for Stillbirth Prevention (CC4SP). The CC4SP’s mission is to lobby the Government of Canada to follow the lead of countries such as England, Scotland, the Netherlands and Australia and prevent stillbirths in Canada. England and Scotland have been able to reduce their stillbirth rate by at least 20 per cent, the Netherlands by 52 per cent and Australia is aiming to reduce its stillbirth rate by 20 per cent or more over five years. In comparison, Canada’s stillbirth rate has remained stagnant for more than 20 years, at a rate of more than 3,000 per year, according to Statistics Canada, and no plans are in place to reduce it.
The CC4SP is asking the Government of Canada to implement, in consultation with an expert committee, a national action plan adapted from the Australia December 2020 National Stillbirth Action and Implementation Plan, which was itself adapted from the England and Scotland action plans.
Here are five key areas to act on and what they would look like within the Canadian context.
1. Ensure high-quality stillbirth prevention and care
Under this key area, PHAC would develop national guidelines and best practices in stillbirth prevention that would include fetal movement monitoring, sleeping on one’s left side in the third trimester, quitting smoking and improved detection of impaired fetal growth. These could be easily included in a revised version of PHAC’s National Guidelines for Family-Centred Maternity and Newborn Care.
In Australia and England, this information is collated into “bundles of care” that encourage women and health-care professionals to discuss the risks of stillbirth and how antenatal care can be individualized to reduce those risks. The Australian Safer Baby Bundle could also be adapted to Canada.
Culturally and linguistically appropriate models for stillbirth prevention and care would be developed for high-risk groups such as First Nations, Inuit and Métis communities, rural and remote communities, immigrants and refugees and Black individuals.
2. Raise awareness and strengthen education
Unfortunately, many people are unaware that 3,000 stillbirths still occur in Canada each year. PHAC needs to promote community awareness and understanding of stillbirths, ensuring consistent messaging to encourage conversations about stillbirth and educating parents and the public about the risk. That is why the petition presented to the House of Commons in February 2021called for a national awareness campaign to inform pregnant women of the risk of stillbirth and the importance of fetal movements during the third trimester.
Education for health professionals in the prevention and clinical care of stillbirth could be incorporated into undergraduate education, clinical placement training, and/or professional development for a range of health professions, such as obstetricians, midwives, nurses, general practitioners, etc. Health professional education needs to include information on culturally safe care consistent with national guidelines. A stillbirth education program for professionals is a critical component of the implementation plan for a bundle of care. Canada could start by adapting the stillbirth e-learning modules developed by the Stillbirth Centre of Research Excellence.
3. Improve holistic bereavement care and community support following stillbirth
The 2019 Supporting Families After the Loss of a Child report issued by the House of Commons Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities contained powerful testimonies from parents on how the government could ensure parents no longer suffer undue financial or emotional hardships after pregnancy and infant loss. Witnesses have told the committee that:
“It is crucial that there is a system that reaches out quickly to bereaved families. While some communities have strong peer supports available, many do not. The coverage across Canada is not equal. [Witnesses] felt that the government needed to do more to ensure these networks were both supported and complemented by professionals. In addition, witnesses underscored that services and support networks need to be accessible. Accessibility in this context requires systematic outreach and follow-up to bereaved parents and families.”
It is crucial that there is a system that reaches out quickly to bereaved families. The coverage of peer-support across Canada is not equal.
The 2022 Federal Budget acknowledged that miscarriage and stillbirth “can cause physical and psychological trauma,” which is a step forward. However, while the budget talks about introducing new provisions to the Canada Labour Code to support workers experiencing miscarriage or stillbirth, it remains silent on providing resources for bereavement care and psychological support, even though the Mental Health Commission of Canada called for a national perinatal mental health strategy in 2021. In our view, any such strategy should include quality bereavement care. Free grief counseling sessions from professionals, for example, are a sought-after service offered by Baby’s Breath Canada thanks to its generous donors, but the organization can barely meet the demand and could use a stable source of funding to provide a crucial service nationwide.
Education and sensitivity training also needs to be provided to health professionals to better support parents experiencing a stillbirth. Susannah H. Leisher’s Respectful stillbirth care is a human right underlines how crucial it is to provide respectful care for parents experiencing a stillbirth. Support should also be given to families to help them make informed decisions about the investigation process surrounding the stillbirth. Fortunately in Canada, parents can have an autopsy conducted free of charge but going through that process requires support as it can be distressing for parents. Health professionals also need to be particularly attentive to parents having experienced a stillbirth in a previous pregnancy while navigating a subsequent pregnancy. Emotional and psychological help is often needed as these parents experience anxiety and may have difficulty bonding with the baby during pregnancy.
4. Improve stillbirth reporting and data collection
The Vital Statistics – Stillbirth Database collects demographic information annually from all provincial and territorial vital statistics registries on all stillbirths in Canada. Provincial and territorial Vital Statistics Acts (or equivalent legislation) make the registration of all stillbirths compulsory. Fetal deaths in which the “product of conception” has a birth weight of 500 grams or more or the duration of pregnancy is 20 weeks or longer are registered. Statistical data are reported for each stillbirth for inclusion in the Canadian Vital Statistics system (non-exhaustive list):
- Date and place of stillbirth;
- Sex, birth weight, and gestational age of the fetus;
- Parents’ age, marital status, and birthplace;
- Mother’s place of residence;
- Type of birth (single or multiple);
Summary statistics are published by Statistics Canada annually. More in-depth analyses are conducted by PHAC through the Canadian Perinatal Surveillance System and published in a report on Perinatal Health Indicators for Canada, the latest being for 2017. Much of the more specific data, including the cause of fetal death, excludes data from Quebec since the province does not contribute to the Canadian Institute for Health Information’s Discharge Abstract Database. This should be remedied and more detailed data should be collected from all provinces and territories to reduce inequities among groups at greater risk of stillbirths such as Black Canadians and immigrants and refugees.
In an article for the Lancet 2016 series Ending Preventable Stillbirths, high-quality perinatal mortality audits combined with initiatives to improve medical practice were found to reduce stillbirths and neonatal deaths. The World Health Organization’s Making every baby count: audit and review of stillbirths and neonatal deaths sets out a step-by-step process for a review of all perinatal deaths. Implementation of national review programs using rapid reporting systems is increasing in countries such as New Zealand, England, Ireland, and Scotland.
In Canada, the audit tool would support high-quality investigation and classification of all perinatal deaths in a timely way to enable local, jurisdictional, and national reporting. Secondary goals include supporting clinician education and informing future research. The article also notes that poor-quality data collection for stillbirths is a major problem across high-income countries.
5. Prioritize stillbirth research
Women’s health remains under-researched and underfunded. Much is still unknown about stillbirth and conflicting messages continue to be perpetuated by those whom parents should be able to trust the most – their own healthcare provider. It is clear that the Government of Canada must invest in research to develop safer stillbirth prevention protocols and to ensure that providers understand the best clinical practices for stillbirth prevention and bereavement care.
In Australia, a government-funded collaborative research group called the Stillbirth Centre for Research Excellence is raising the standard of perinatal care around the world. They are uncovering new knowledge on stillbirth and advising care providers on how to translate these research findings into practice. In the U.K, Tommy’s has provided this leadership. Canada has yet to establish an organizational leader in stillbirth research. As a first step, the CC4SP is proposing that a new role be created to provide research leadership nationally: Canada Research Chair on Miscarriages, Stillbirths, Neonatal Deaths, and Sudden and Unexplained Child Deaths.
It is crucial that Canada embraces responsible innovation as a means of facilitating a greater understanding of individual healthcare needs and encouraging patient participation. Digital health tools, such as the mobile application created by Flutter Care, help parents to recognize their fetal movement patterns, identify changes that could indicate fetal distress, and make more informed health decisions. Fetal movement data, and how it relates to maternal health experiences and outcomes, would provide critical insight for researchers and care providers.
The CC4SP needs your help to protect families from the grief of a stillbirth that could otherwise be prevented. To find out more and get involved in the ways listed below, please visit www.cc4sp.ca
The CC4SP intends to present a petition to the Canadian Minister of Health this fall to demonstrate the importance of this issue. The goal is to get at least 3,000 signatures in honour of the more than 3,000 babies that will be stillborn in 2022. It’s time to change this statistic:
- Sign the petition;
- Share the petition on social media;
- Ask at least two people to sign and share the petition.
2) Join the collaborative as an organization
The CC4SP needs organizations to come together to form a united front. Joining the collaborative means you believe that more needs to be done to prevent stillbirths and that the federal government needs to make this a priority. As an organizational member of this collaborative, you would:
- Share this initiative with your community (petition, involvement form) via your mailing lists and social media;
- Promote the CC4SP’s educational materials on stillbirth prevention with your community;
- Help to determine the strategic direction of the collaborative.
Join the CC4SP’s mailing list for volunteers. If an opportunity arises, a call for volunteers will be put out. This could include areas such as communications, social media management, event organizations, research or policy, and legislation.
4) Amplify the CC4SP
Follow the CC4SP on social media to stay in the loop about what the collaborative is up to. Share the posts with your friends and communities to help amplify the initiative.