Catherine Hughes, Light for Riley

Catherine and her husband campaign to protect children from vaccine-preventable diseases in their home country Australia and across the world. Their work helps raise money for the Princess Margaret Hospital Foundation in Perth and generate vaccine donations for UNICEF. Here Catherine explains the personal tragedy that led her to start the campaign and its importance to every parent.

Australia is known as the “lucky country”, and I am certainly lucky to live here. We have access to clean water, great education, and wonderful health care. Our children are able to receive free vaccinations, and the strength of these free vaccination programs has seen diseases such as polio completely eradicated.

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Photo: Riley Hughes. 

Earlier this year, something very unlucky happened to our family.  Our beautiful baby boy, Riley, contracted whooping cough (pertussis) and passed away at just 4 weeks old, too young for his first round of immunisations. Our hearts shattered and we were left with funeral preparations, sudden media attention, and a three year old daughter who couldn’t quite understand where her much-loved baby brother had gone.

How did it come to be, that in this lucky country, our son died of a vaccine-preventable disease?  And most importantly, what can we do to ensure that it doesn’t keep happening to other babies in Australia?

Firstly, the whooping cough vaccine needs to be offered to every woman during pregnancy.

While Riley lay dying in hospital, I discovered that many women around the world were having a vaccination in their third trimester to protect their newborn from contracting whooping cough.  Yet throughout my pregnancy, the whooping cough vaccine was never once mentioned to me.  It has been a recommendation in Australia since 2013, but in Western Australia where I live, most pregnant women were not offered it.  Studies have shown that babies born to a mother who received this pregnancy vaccination were 90% less likely to contract this terrible disease, and I truly believe that if I had been offered this vaccination, Riley may still be here today.  I think a clear message needs to go out to all parents – ‘Childhood vaccination begins in pregnancy’.

Secondly, greater education is needed to improve “Community Immunity”

Many adults do not realise that the whooping cough vaccination they had as a child has probably worn off, and that whooping cough boosters are required every 5-10 years.  While we hope a longer-lasting vaccine is created one day, in the mean-time there needs to be more education in our communities about the need for adult boosters.

The other thing affecting our “community immunity” are parents who refuse to have their children vaccinated.  There are so many factors that contribute to vaccine refusal in our society – from conspiracy theory beliefs, to people concerned about possible (yet highly improbable) side effects, to people who believe anything “natural” is good and that anything “unnatural” is bad.  Due to the success of vaccination and our excellent healthcare system, we are not regularly confronted with the diseases that vaccinations protect us from. I think this makes it easier for us to become complacent and forget just how important these vaccines are. I don’t think there is one simple solution to fix this issue, but I do think educating school-children about vaccination & vaccine-preventable diseases could be a positive step.

 

Riley’s death is, by far, the most horrifying and devastating thing I’ve ever experienced.  

My husband and I agreed that we mustn’t let this terrible, preventable death happen to other children, and decided we would advocate for the prevention of this disease in memory of our son.   We set up a Facebook page called “Light for Riley” to honour his short little life and raise awareness about adult vaccination, childhood vaccination, and vaccine-preventable diseases.  We used interview requests as a chance to successfully pressure the Australian governments to provide free boosters to pregnant women.  Realising many adults had no idea what vaccines they needed, we also started a campaign for a “whole-of-life” vaccination register, which will be implemented by our government within the next 18 months or so.

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Photo: meeting Senator Richard Di Natale in Federal Parliament along with immunisation expert Prof. Robert Booy , and immunisation advocates Toni & Dave McCaffery who lost their beautiful daughter Dana  to whooping cough in 2009.

We also decided to attend many of the Pregnancy, Baby & Children’s expos around the country, where we tell Riley’s story, inform expectant parents about the importance of pregnancy vaccination, and hand out brochures and information about vaccination.  The travel can be exhausting, but it is so rewarding speaking to thousands of pregnant Mums and letting them know how they can protect their baby from vaccine-preventable diseases. As well as raising awareness, we have used these Expos as a chance to do some fund-raising, and so far have raised just over $70 000 for the Princess Margaret Hospital Foundation’s whooping cough research project.

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Photo: all set up for the Pregnancy, Baby & Children’s Expo in Sydney

This July, Riley would have reached 6 months of age had he been alive. He would have had his six month needles, and would finally be fully immunised against the disease which so cruelly took his life away back in March. We decided to do a fundraiser for UNICEF, donating 200 Polio vaccines in his honour and posted about it, hoping that a few others might do the same. We were so humbled and awed to find out that 45600 vaccines were donated that week in honour of Riley – such incredible generosity!

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Photo: UNICEF vaccine donation post                                                 

From here, we hope to set ourselves up as a foundation where we can continue to raise awareness about the importance of vaccination in Australia. We hope that our advocacy and awareness campaigns can help improve vaccination rates in Australia, and ultimately prevent further deaths from vaccine-preventable diseases.

 


To follow the campaign, visit: www.facebook.com/LightForRiley