25th April 2025
In recognition of World Immunisation week (24-30 April 2025) – we hear from Catherine who has chosen to share her story of the tragic death of her beautiful son Riley to whooping cough. This Voices blog talks about baby loss which readers may find upsetting. Please seek support from a loved one, friend or colleague if needed and take care of yourselves.
Catherine Hughes, Founding Director at The Immunisation Foundation of Australia, and mum of Riley
My journey as a mother took an unexpected and devastating turn with the loss of my son, Riley. Born in Perth, Western Australia, in 2015, Riley was a beautiful, healthy baby boy, and his death in hospital from whooping cough (pertussis) at just 32-days-old is a reality I live with every day. Riley was too young for his vaccinations, relying on the protection of those around him. This experience has driven me to advocate for immunisation, and I want to share my story with health visitors who play such a pivotal role in protecting families.
When Riley was just three-weeks-old, he developed what seemed like a cold and an occasional cough. Despite initial assurances, his condition rapidly deteriorated, and he was diagnosed in hospital with whooping cough. The following days were filled with unimaginable anguish as we watched him fight this terrible disease. Sadly, medical intervention was not enough, and Riley died in my arms.
In the aftermath of Riley’s death, I learned that whooping cough vaccination during pregnancy was recommended in other countries. This vaccine provides antibodies to the unborn baby, offering protection from the start. Discovering this was incredibly painful, but it ignited a fire in me to make a change.
My husband Greg and I established the “Light for Riley” campaign to shine a light on whooping cough and promote vaccination. We shared Riley’s story, and the response was overwhelming. Our efforts contributed to a change in policy in Australia, with free whooping cough vaccines now available to pregnant women. The programme saw a high uptake in Western Australia, reaching 89% of pregnant women in 2020 (https://www.mja.com.au/journal/2023/218/11/influenza-and-pertussis-vaccine-coverage-pregnancy-australia-2016-2021). Our work continues through the Immunisation Foundation of Australia, which aims to advance public health through community-driven immunisation advocacy by educating the general community about the impact and prevention of all vaccine-preventable diseases.
Health visitors are instrumental in immunisation promotion. Interactions with families provide a unique opportunity to educate and support informed decision-making. Through my experience, I’ve identified several key principles that can guide this important work:
- Creating a welcoming environment where parents feel comfortable expressing their questions and concerns is paramount, as vaccine hesitancy often arises from fear or a lack of information.
- Adopting a guiding communication style, where health visitors work in partnership with parents, empowers them in their choices.
- Directing discussions towards the real risks and effects of diseases, using relatable stories like Riley’s to illustrate the potential impact, is also effective.
- Using accessible language, such as “whooping cough” instead of “pertussis,” helps families understand the information.
- Reinforcing that vaccination is a widespread practice, with most families choosing this path to promote their children’s health, can also be beneficial.
These conversations should centre on infant protection, emphasising that vaccination’s primary aim is to promote the child’s health. It’s important to provide accurate, current information from reliable sources when addressing safety concerns. Supplying suitable, up-to-date resources and practical details about how, when, and where to get vaccinated makes the process clear and accessible. Above all, offering a clear and confident recommendation, grounded in professional expertise, is one of the most significant factors in influencing parents’ decisions.
My experience with Riley has shown me the devastation that vaccine-preventable diseases can cause. It has also shown me the power of advocacy. The role of health visitors is incredibly important. By using these principles and sharing stories like mine, health visitors can help promote children’s health and prevent other families from experiencing the loss that my family did.
Catherine Hughes, Founding Director at The Immunisation Foundation of Australia, and mum of Riley
The iHV has worked closely with the UK Health Security Agency (UKHSA) and we have updated our A-Z resources on Immunisations for our members to support health visiting teams with enhancing their knowledge and skills about immunisations. You can also watch the recording of our recent Insight webinar event “Protecting lives: Health visitor’s role in vaccination success” to support your continuous professional development. We were very privileged to have Catherine and the UKHSA join us as keynote speakers and be part of our expert panel during our Insights event.
We would like to extend our heartfelt thank to Catherine for sharing Riley’s story with us. Health visitors and health visiting team members can help magnify the legacy and learning from Riley’s short life by promoting vaccine uptake and sharing Catherine’s story in their vital work with all families.
